SEATTLE MAY 2012
NEW YORK CITY MAR 2012
PHILADELPHIA MAY 2012
BALTIMORE MAY 2012 SAN FRANCISCO SEP 2011 CHICAGO NOV 2011
DENVER MAY 2012 WASHINGTON DC NOV 2011
LOS ANGELES APR 2012 BIRMINGHAM JAN 2012
ATLANTA MAY 2012 LAS VEGAS APR 2012 DALLAS MAY 2012
HOUSTON MAR 2012 NEW ORLEANS JAN 2012 SAN JUAN MAY 2012
Ft. Lauderdale FEB 2012
Road to AIDS 2012
September 30, 2011–May 24, 2012
A project of
Final Report
This project is supported by a grant from THE MERCK COMPANY FOUNDATION
table of contents
A Note from Community Education Group...... i A Note from Urban Coalition for HIV/AIDS Prevention Services...... iii Executive Summary...... 1 San Francisco...... 4 Washington, DC...... 6 Chicago...... 9 New Orleans...... 12 Birmingham...... 15 Fort Lauderdale...... 17 Houston...... 19 New York...... 22 Los Angeles...... 24 Los Vegas...... 26 Denver...... 29 Seattle...... 31 Philadelphia...... 33 Dallas...... 34 Atlanta...... 37 Baltimore...... 39 San Juan...... 41 Community Input: Surveys...... 44 Post Event Evaluations...... 54 Lessons Learned...... 61
A note from Community Education Group
Welcome to the final report on the findings of Road to AIDS 2012 (RTA 2012), a nationwide tour of 17 cities designed to engage communities in conversation about the HIV/AIDS epidemic in America. Through town hall meetings from San Francisco to San Juan, Puerto Rico, communities discussed the impact of the National HIV/AIDS Strategy (NHAS), while ensuring that their voices were included in the development of a domestic platform for the XIX International AIDS Conference (AIDS 2012).
RTA 2012 was a joint effort between Community Education Group (CEG), the Urban Coalition for HIV/AIDS Prevention Services (UCHAPS) and the International AIDS Society (IAS), which is the convener of AIDS 2012. The tour was funded by a grant from the Merck Company Foundation. It was also made possible thanks to the efforts and contributions of its many partners including the federal government, local health departments, community organizations, healthcare organizations, private industry and people living with HIV/AIDS (PLWHA).
The NHAS is the United States’ first comprehensive strategy for dealing with the HIV/AIDS epidemic. It calls on the federal government, along with state and local governments, to achieve unprecedented coordination and service integration to accomplish three broad goals: reduce new HIV infections, increase access to care and improve health outcomes for PLWHA, and reduce HIV-related disparities and health inequities. It also represents a unique opportunity to promote accountability, performance and improvements in public health.
In light of the Strategy, the U.S. Department of Health and Human Services (HHS) launched a 12 Cities Project to demonstrate how a broad range of federally supported prevention, care and treatment activities in U.S. cities with the highest burden can work together across multiple organizational and program boundaries to achieve the outcomes of the NHAS.
In that same spirit of collaboration, RTA 2012 set out to develop a continuous series of community mobilization events through the 12 cities, culminating into the official community mobilizing activity of AIDS 2012. The initial goals of RTA 2012 were to: elevate HIV/AIDS as a key public health priority in local communities among multiple types of stakeholders, including government, the advocacy community, community based organizations, the faith-based community, healthcare providers, business partners and the media; heighten public awareness in each jurisdiction about the programmatic strategies that are being implemented to integrate and coordinate prevention, care and treatment services; and establish City Platforms across the RTA 2012 cities that will support movement toward the achievement of NHAS objectives.
The 12 cities initially identified as having the greatest burden in the United States were San Francisco; Washington, DC; Chicago; Fort Lauderdale/Miami; Houston; New York; Los Angeles; Philadelphia; Dallas; Atlanta; Baltimore, and San Juan, Puerto Rico. The cities of New Orleans and Birmingham were added to the RTA 2012 tour because the southern region of the U.S. has a unique epidemic that is influenced by its geographic location, as well as issues of race, class and gender. The cities of Las Vegas, Denver and Seattle were later added to the tour rounding out the 17 cities.
i A note from community education group (Continued)
One of the reasons CEG came together with Anna Ford, who was then the director of UCHAPS (Dr. Marsha Martin replaced Anna Ford as director midway through the tour), is because we wanted to find out what people thought about the National HIV/AIDS Strategy in communities outside of Washington. We wanted to ask communities, “How has the NHAS impacted your life particularly leading up to AIDS 2012?” We wanted to give government the opportunity to speak to community, and community the opportunity to speak to government.
Both CEG and UCHAPS brought unique assets to this project and were ready to exploit those strengths to ensure maximum participation in RTA 2012. Being a community based AIDS service organization CEG brought the strength of understanding what other locally based providers would want to gain from participating in a ROAD TO AIDS Town Hall event, along with the ability to manage and coordinate a public awareness campaign on a national scale. With that knowledge CEG was expected to create a framework that would guide the town hall discussions through transformative topics such as the National HIV/AIDS Strategy and the Affordable Care Act, as well as unique concerns of importance to the various jurisdictions. As a national advocacy group, UCHAPS with member jurisdictions in 8 of the 15 RTA 2012 cities, was expected to call upon its extensive reach in those cities to raise awareness and support from critical partners including local and state community planning groups, Ryan White Councils and the local health departments.
One of the first things we realized when the tour began in September of 2011 was that a lot of people really didn’t understand the Strategy. Others were tired of attending town hall meetings, only to feel unsupported as they tried to develop a local response to the NHAS.
Another thing we quickly realized is that there is not one core set of needs and beliefs. Each city has different concerns, different priorities and a different strategic response to HIV. In most cities there is a small core group that is knowledgeable about HIV. However, if the goals of the NHAS are to be realized, we must reach beyond that group and get other people to think about HIV just as we in the HIV/AIDS community must start thinking of broader health concerns and broader prevention strategies.
By the time the RTA 2012 tour was over in May of 2012, we had realized that despite the differences among the cities, there was one unifying theme that resonated from San Francisco to San Juan. ROAD TO AIDS 2012 proved that people who are in this work are in it because they are dedicated to reaching an end to the HIV/AIDS epidemic. That is a foundation that we can all build upon.
A.Toni Young
Executive Director, Community Education Group
ii A NOTE FROM THE URBAN COALITION FOR HIV/AIDS PREVENTION SERVICES
From February through May, UCHAPS worked with CEG to plan the second series of town hall meetings on the RTA 2012. UCHAPS worked with its members around the country, the HIV Regional Resource Network of the US Department of Health and Human Services, state and local governments and local communities to increase outreach to, and participation in, the meetings. Attendees at each meeting raised geographically unique issues as well as crosscutting themes of nation-wide importance. Each meeting included a discussion on ways for local community to become involved with AIDS 2012.
The format varied by location but each meeting followed the presentation of several video clips by HIV positive persons living in Los Angeles who filmed and described their everyday lives. Some meetings featured panel presentations while moderated audience discussions were the order of the day in others. Meeting space also varied by location with some meetings held in government facilities and others held in community organization homes. But each location proved to be an appropriate venue for the varied discussions that took place.
In February, 2012, new UCHAPS Director, Dr. Marsha Martin, joined RTA 2012 on the journey in Ft. Lauderdale, Florida. UCHAPS added Las Vegas, Denver and Seattle to the tour because we cannot always and only include the big cities like New York, Los Angeles and San Francisco. Exchanging and capturing the reality in the low incidence states adds richness and real life information to the overall report.
History surely will record RTA 2012 as a truly unique example of government and community working together toward common goals.
iii
executive summary
ROAD TO AIDS 2012 began at a time of major change in of town hall participants was that there is a general the HIV/AIDS epidemic: complacency among Americans about HIV. Participants • The United States was a year into its first National HIV/ at 12 of the 17 cities (Chicago, New Orleans, Birmingham, AIDS Strategy (NHAS). Fort Lauderdale, Houston, Los Angeles, Las Vegas, Denver, • The pending implementation of the Patient Protection Seattle, Philadelphia, Dallas and Baltimore) discussed ways and Affordable Care Act (ACA), or federal healthcare to get more people involved in the fight against the HIV/ reform, promised to change the way Americans get AIDS epidemic. For many of these town hall participants, access to healthcare. events such as RTA 2012 were examples of preaching to • The XIX International AIDS Conference, or AIDS 2012, will the choir. There was also widespread concern in those be on U.S. soil for the first time in more than 20 years cities that because of general complacency, many people when it takes place in Washington, DC in July 2012. underestimate their risk of acquiring HIV and therefore are • Major advances in the treatment and prevention of HIV less likely to use condoms and take steps to prevent the have improved the quality of life of people living with transmission of the disease. HIV and AIDS, while enhancing prevention efforts. • While science has led to breakthroughs, a struggling Stigma was another common topic of discussion. Across U.S. economy has led to funding cuts in HIV prevention the country, stigma was one of the most cited barriers and treatment programs on the federal, state and to getting more people involved in ending the HIV/AIDS local levels throughout the nation. As a result, the epidemic. Some regions, such as the southern cities, pointed very people who can be helped by the scientific to unique challenges. For example, Birmingham town hall breakthroughs are faced with socioeconomic barriers participants said the small-town atmosphere means people to the treatments that they need. often know one another in the town. This could lead to fears, for example, that the local pharmacist will know that At each of the town halls, three major questions were a person has HIV or a neighbor could see a person picking presented and discussed: up her HIV medications. The lack of anonymity in the South • What impact has the National HIV/AIDS Strategy had could keep people from seeking out care. Southern cities on on local communities? the ROAD TO AIDS 2012 tour also indicated feeling a lack of • Given the changes taking place in health care reform, support from the federal government. New Orleans and Fort what do communities need to do to prepare? Lauderdale participants particularly felt that their needs • Given that the world is coming to Washington, DC weren’t being responded to in Washington, DC. San Juan in 2012 for AIDS 2012, what does that city want the was unique in that many members of the community felt a world to know about the region’s response and needs lack of support from the federal government, as well as their surrounding HIV? local health department.
A BREAKDOWN OF COMMUNITY CONCERNS When it comes to the Affordable Care Act, town hall While each city had its unique concerns, there were participants were most concerned about whether some issues that were brought up time and time again healthcare reform would lead to the elimination of HIV in town hall after town hall. Among the biggest concerns programs such as the Ryan White HIV/AIDS Program and
1 Executive Summary (Continued)
the AIDS Drug Assistance Program. Town hall participants Of those who were familiar with the Strategy, one of the in Washington, DC; Chicago; New Orleans; Birmingham; biggest concerns had to do with the shift in resources Fort Lauderdale; Houston; Los Angeles, and Denver all geared toward fighting the epidemic. The NHAS calls discussed the importance of members of the community for ensuring that the most resources be given to the advocating for the continuation of these programs. Some communities that are hardest hit by the epidemic. Not cities, such as Denver, pointed out that these programs only that, but funding for certain groups that are deemed would be needed to provide healthcare for people that to be the most at risk will be increased, while funding may fall through the cracks of the Affordable Care Act, for other groups will be cut. More resources will also be such as undocumented immigrants who will not have allotted to treatment and prevention among people living healthcare coverage under the law. with HIV/AIDS than to the HIV-negative community.
FEARS SURROUNDING THE AFFORDABLE CARE ACT Not all cities were 100 percent in favor of the shifts in There was also a large contingent of town hall resources. For example, attendees of the Los Angeles participants who feared that the Affordable Care Act town hall argued that more resources should be allotted would be repealed through the election of a new to keeping the negative population from acquiring HIV president or overturned by the Supreme Court. Though in the first place. Other cities, such as San Francisco, the Supreme Court has since voted to uphold the law, acknowledged that they might see a decrease in funding concerns still remain that a new president might repeal as the monies are designed to follow the epidemic. There it. There was a general consensus among town hall was also a lot of discussion about how the NHAS will participants that the Affordable Care Act would be impact community based organizations (CBOs). As the beneficial to people living with HIV/AIDS. For example, NHAS redefines the way funding is allotted for HIV/AIDS the inability of insurers to deny coverage to those with prevention, care and treatment, many community-based pre-existing conditions would help people living with the organizations and AIDS service organizations (ASOs) disease. Town hall participants in San Francisco, Chicago, will find that their roles will change in regards to the Fort Lauderdale, Houston, New York, Los Angeles, Seattle epidemic. Organizations that only perform one task, such and Atlanta all discussed the importance of mobilizing as testing, may find that they’ll no longer be financially politically and voting for candidates that support the supported as more focus is placed on organizations that Affordable Care Act and the HIV/AIDS community. address the entire continuum of HIV/AIDS prevention, care and treatment. Many CBOs will be forced to adjust However, there were real fears across the United States their business models or they will have to close due to a that there would be growing pains during the transition lack of support. Town hall participants discussed ways in to the Affordable Care Act. Many people will be sent which organizations could re-invent themselves, whether to new providers or will have their healthcare costs through changing their business models or expanding covered differently than they are now. Many people their services so that they could remain relevant and living with HIV/AIDS will also begin getting their coverage continue to service the community. through Medicaid rather than through programs they are currently using. SOCIAL FACTORS AN ISSUE Several town hall cities voiced the importance of considering Town hall participants had a lot to say also about the the social factors that impact the HIV/AIDS epidemic, National HIV/AIDS Strategy. The knowledge of the such as drug use, poverty and homelessness. There was a Strategy varied from city to city. For example, town concern that the National HIV/AIDS Strategy did not take hall participants in Atlanta were very knowledgeable into consideration the power these other social factors have about the Strategy, while most of the attendees of the to influence the epidemic. Seattle town hall participants, for Las Vegas town hall indicated that they had never even example, described the need for an HIV-Plus agenda that heard of the Strategy. would not only look at HIV, but would consider those other factors that contribute to the epidemic.
2 Executive Summary (Continued)
Historically, prevention and treatment efforts for HIV pertaining to HIV. For example, studies have shown and AIDS have been performed separately from those of that when people with HIV start taking antiretroviral other medical illnesses. However, with the National HIV/ (ARV) medications right after diagnosis, they are less AIDS Strategy and healthcare reform comes the idea likely to infect others. There is also a lot of excitement of integrating HIV prevention and treatment with other surrounding Pre-Exposure Prophylaxis for HIV Prevention, healthcare issues, having traditional healthcare providers, or PrEP, which could interrupt acquisition of the HIV for example, become the focal point for HIV prevention virus. However, town hall participants in several ROAD and treatment efforts. That raises a number of questions, TO AIDS 2012 cities (San Francisco; Washington, DC; including how we end the ‘exceptionalisms’ surrounding Chicago; Denver; Atlanta, and San Juan) voiced concerns HIV treatment without losing excellence in care. Town hall that the general community is not hearing about the participants in San Francisco; Washington, DC; Chicago; breakthroughs so they aren’t able to understand and take Birmingham; Las Vegas; Dallas, and Baltimore all voiced advantage of them. concerns that people living with HIV/AIDS will be forced to go to health care providers that don’t offer the care Most cities also described some excitement about having and emotional support that they received from ASOs. an International AIDS Conference in the United States. Another concern was that some healthcare providers Not surprisingly, cities located closer to Washington, DC, tasked to work with PLWHA will not be knowledgeable such as Philadelphia and New York had more town hall about how to do so. Town hall participants also talked participants who were planning to attend AIDS 2012. The about the importance of the HIV/AIDS community biggest barrier to attendance was cost, as many town hall being a resource and educating the general healthcare participants complained that the registration costs, as community about HIV. well as the fees associated with travel and housing, were too steep for them to make the trip. Not all groups felt that they were getting the resources that they need. In nine town hall cities (Washington, DC; It’s also important to note that a nine-month period New Orleans; Fort Lauderdale; New York; Las Vegas; does not go by without staffing changes, and many Denver; Dallas; Atlanta, and San Juan) there was major participants in town hall discussions have gone on to concern that youth weren’t being targeted with enough take on new roles in fighting the HIV/AIDS epidemic. messages of HIV/AIDS prevention, nor were they being For example, Grant Colfax, who was a panelist at the mobilized to join in the fight against the HIV/AIDS San Francisco town hall meeting as the then-director epidemic. Other groups believed to be underrepresented of HIV Prevention and Research for the San Francisco were sex workers and transgender individuals, who are Department of Health, is now director of the White both particularly vulnerable to the HIV/AIDS epidemic, House’s Office of National AIDS Policy. Likewise, Marsha participants said. Martin, who served as a panelist for the San Francisco town hall as the director of Get Screened Oakland, took Some town hall cities were particularly proud of their part in subsequent town hall panel discussions as the successes in managing the HIV/AIDS epidemic. Seattle director of UCHAPS. participants were pleased that the city has a lower-than- average community viral load. Likewise, New York town hall participants were happy with the local response to HIV/AIDS, but some participants lamented the fact that if they ever moved away from New York, they might be jeopardizing their health since other parts of the country have not had as effective of a response to the epidemic.
There was also a lot of excitement among town hall participants about the recent advances in science
3 The Feedback Challanges and Solutions from the Communities
san francisco Audience Key Concerns and Proposed Approximately 100 people in attendance, Solutions From San Francisco Friday, September 30, 2011 representing many racial and ethnic Town Hall Participants San Francisco City Hall groups including White, Black, Latino and North Light Court Asian. Males largely outnumbered females. I. The Realignment of Resources 1 Dr. Carlton B. Goodlett Place Most participants who made comments The NHAS calls for ensuring that the most San Francisco, CA 94102 self- identified as men who have sex with resources be given to the communities men (MSM). that are being hit the hardest by the Speakers and Panelists epidemic. As a result, San Francisco will Grant Colfax, director of HIV Prevention Overview be one of the communities that will face and Research for the San Francisco Residents of San Francisco and Oakland, reduced resources. Also, as a result of Department of Health; Andrew Forsyth, Calif., acknowledged the successes and the strategy, funding for certain groups senior science advisor of the Department lamented the challenges involved in that are deemed to be the most at risk of Health and Human Services, Office of ending the HIV/AIDS epidemic. Among will be increased, while funding for other the Deputy Assistant Secretary for Health/ the topics discussed were the use of groups will be cut. This comes as the San Infectious Diseases; Herb K. Schultz, alternative medicine to treat HIV/AIDS, Francisco area is facing budget cuts on the regional director of the U.S. Department legal protections for people living with HIV federal, state and local levels. of Health and Human Services, Region IX; and AIDS, the impact of immigration on the Charles Fann, community co-chair for the epidemic’s spread and prevention efforts Suggested solutions: San Francisco HIV Prevention Planning targeting elderly Americans. The other • Community involvement is crucial Council (HPPC) and Health Promotions big concern: the effect of budget cuts on now as federal, state and local Program and manager at Tenderloin prevention and treatment efforts in the governments, as well as AIDS Health; Kabir Hypolite, director of the Bay area, and how to ensure that resources Service Organizations, are now Office of AIDS Administration for Alameda are allotted fairly. Perceptions about updating their programs and County; Sharyn Grayson, co-chair at the state of the HIV/AIDS crisis varied services to reflect new financial Collaborative Community Planning depending upon which side of the Bay realities. The community’s voice Council in Oakland; Marsha A. Martin, residents lived on. Participants perceived about what works will ensure that director of Get Screened Oakland; A. Toni Oakland to be in the shadow of San cuts are not made to the programs Young, executive director of Community Francisco. Congresswoman Barbara Lee and services doing the most good. Education Group; Barbara Garcia, (D-Calif.) from Oakland, a founding co-chair director of the Department of Public of the Congressional HIV/AIDS Caucus, told • The HIV/AIDS community must Health in San Francisco; Cecilia Chung of town hall participants, “We’re experiencing look to the private sector and the Positive Women’s Network Institute; an unprecedented focus on domestic HIV/ philanthropic organizations to help Congresswoman Barbara Lee (D-Calif.) AIDS with [AIDS 2012] and the National HIV/ to counteract government funding from Oakland, a founding co-chair of the AIDS Strategy.” shortfalls. Congressional HIV/AIDS Caucus.
4 II. Different Epidemic Experiences for • ASOs and others who have been the unique challenges facing shadow cities Different Groups dealing with HIV/AIDS prevention and — those areas of the country that don’t get All groups do not experience the epidemic treatment must work with healthcare the same level of attention and funding as in the same way. Therefore even though providers to get them up to speed on those cities that have larger populations there are limited funds, it’s important that dealing with the epidemic. of people living with HIV/AIDS. Oakland is a messaging be targeted to different groups shadow city of San Francisco, and has had so that it can meet them where they are. to fight the epidemic with fewer resources. Several participants complained about IV. Possibility of the Affordable Care Act feeling left out of discussions about HIV/ Being Repealed Suggested solutions: AIDS. Participants also pointed out a lack Town hall participants discussed the reality • More attention must be given of resources for drug users, people who that there are efforts to have the ACA to those cities with a smaller are incarcerated and members of the repealed. population whose needs may be Latino community. overlooked. Suggested solutions: Suggested solutions: • Community members must • People who work in HIV/AIDS know where political candidates VII. Failure of State and Federal Laws to prevention and treatment must be stand on the ACA, as well as HIV/ Protect the Rights of PLWHA educated on how to deal with people AIDS policies, and support those Congresswoman Barbara Lee said 34 states of other cultures and how to deliver candidates who support the HIV/ and two U.S. territories have criminal culturally-specific services. AIDS community. statutes based on perceived exposure to HIV. She also noted that prosecutions for alleged exposure to HIV have happened III. The End of Exceptionalism V. Integration Between Different in at least 39 states. Another town hall Historically, prevention and treatment Services and Healthcare Providers participant who provides free and low-cost efforts for HIV and AIDS have been As new healthcare options open up to legal services to people living with HIV/ performed separately from those of people as a result of the Affordable Care AIDS, described helping people that have other medical illnesses. However, with the Act, there will be challenges as people move been illegally evicted, denied insurance National HIV/AIDS Strategy and healthcare from one program or service to another. coverage and fired because of their HIV/ reform comes the idea of integrating AIDS status. HIV prevention and treatment with other Suggested solutions: healthcare issues, having traditional • Agencies and organizations must Suggested solutions: healthcare providers, for example, become look at areas where services • People in the HIV/AIDS community the focal point for HIV prevention and are duplicated and find ways to must support legislation that treatment efforts. That raises a number streamline efforts. attempts to get rid of discrimination of questions, including how we end the against people with HIV/AIDS. The ‘exceptionalisms’ surrounding HIV treatment • Processes must be put into place community must also support without losing excellence in care. to ensure that people don’t fall political candidates that have through the cracks when they are shown a history of understanding Suggested solutions: switching from one healthcare and responding to the needs of • CBOs can partner with primary care provider or one program to another. people with HIV/AIDS. physicians, hospitals, methadone clinics and other medical • Community organizations must establishments to raise awareness VI. The Plight of Shadow Cities refer cases of legal discrimination about the importance of HIV With Oakland being well-represented at the to the U.S. Health and Human testing. town hall, a major point emphasized was Services Office for Civil Rights.
5 the Feedback (Continued)
VIII. The Impact of Other Social Policies X. The Use of Alternative Medicines Washington, D.C. on the HIV/AIDS Epidemic and Therapies to Treat HIV/AIDS Several participants described how the Participants said they wanted more Thursday, November 3, 2011 HIV/AIDS epidemic is impacted by other options to use alternative medicines and FHI Conference Center social policies, such as those on drug use, therapies in the fight against HIV/AIDS. 1825 Connecticut Avenue immigration and incarceration. Washington, DC 20009 Suggested solutions: Suggested solutions: • Government agencies should reach Speakers and Panelists • Government agencies must be out to holistic healthcare providers A.Toni Young, executive director of pressured to work together so that to provide services to people living Community Education Group; Jeffrey the policies of one agency don’t set with HIV and AIDS. Crowley, director of the Office of back the goals of another. National AIDS Policy and Senior Advisor on Disability Policy at the White House; • Officials must use social networks XI. The Lack of Knowledge About Ebony Johnson, U.S. global liaison and to identify and help immigrants who Serosorting coordinator for the Women’s Networking are at risk of HIV infection, as well Town hall participants brought up the Zone; Alan Greenberg, professor and as those who have HIV or AIDs. importance of educating people about chair of the Department of Epidemiology sexual health, particularly serosorting, and and Biostatistics at George Washington • There must be a push for whether it’s harmful for people with HIV to University; Greg Pappas, senior deputy mandating sterile syringe access to have unprotected sex with one another. of the HIV/AIDS, Hepatitis, STD, and TB drug users. Administration for the Department of Suggested solutions: Health in the District of Columbia; Phill • The HIV/AIDS community must push • Academic research centers on Wilson, president and chief executive forward the idea of decriminalizing sexuality in the U.S. can answer officer of the Black AIDS Institute and drug use. many of people’s questions about member of the Presidential Advisory sexual health. Council on HIV/AIDS (PACHA) and member of the AIDS 2012 Conference Coordinating IX. The HIV/AIDS Epidemic Among • It’s important to spread the Committee; Fred Sawe, deputy director, the Elderly message that unprotected sex Kenya Medical Research Institute/Walter Participants voiced concerns about between two people with HIV Reed Project HIV Program in Kericho, resources being available for the elderly. carries the risk of transmitting Kenya. Some elderly people do not believe they other sexually-transmitted diseases. are at risk for HIV, and, as a result, are Audience not practicing safe sex, participants said. Approximately 110 people attended the Also, as more PLWHA age, there will be an Washington, DC town hall. Members of the increased strain on Medicare, making the audience identified themselves as federal issue of healthcare reform particularly agency workers; local government workers; important for this age group. and employees of community-based organizations, AIDS service organizations Suggested solutions: and local hospitals. There were also PLWHA • Prevention and care messages must in attendance. Black females made up the be targeted to the elderly to make majority of the audience. Participants also them aware of their risks, as well as included White females, Black males and available treatments. White males. There was also representation from the Latino community.
6
Overview • Various groups can come up with their global economic crisis. Across the country, The inclusion of all groups in the National own strategy for how that community there is a challenge in scaling up the national HIV/AIDS Strategy was a predominant theme. can handle the HIV/AIDS epidemic. strategy when funding sources are drying up Participants spoke time after time about at the federal, state and local levels. how the NHAS fails to communicate directly • The DC government and the DC to various segments of the community, Department of Education can move Suggested solutions: such as women, youth, sex workers, drug quickly to make sure that sexual • As part of the ACA, more people will users and the elderly. Town hall participants education is available to all young be eligible for Medicaid. The District also lauded some of Washington, DC’s people in the schools. has already started shifting people off successes in dealing with the epidemic. of the AIDS Drug Assistance Program Greg Pappas, senior director of the HIV/ and onto expanded Medicaid. Also, AIDS, Hepatitis, STD and TB Administration II. Changes in How Community Based while funding may decrease for for the Department of Health in the District Organizations and AIDS Service testing, some of that financial burden of Columbia, pointed out that the District Organizations Operate can be shared with private insurance of Columbia has the second highest health With the NHAS changing the way resources providers as more people gain access insurance coverage in the nation after are allocated to fight theHI V/AIDS epidemic, to private insurance. Massachusetts, with 96 percent of children we will likely not see as many organizations and 93 percent of adults having health in the future. Many organizations were insurance coverage. Pappas also described developed to respond to specific community IV. Political Threats to NHAS the District’s success in moving people off needs that are no longer relevant. With the NHAS being a hallmark of the of the AIDS Drug Assistance Program (ADAP) Obama Administration, some participants and onto expanded Medicaid. Finally, he said Suggested solutions: worried that it may face political threats if the District has expanded testing efforts • Some organizations can merge and a new administration takes office. going from administering 20,000 tests to capitalize on each other’s strengths. 130,000 in recent years. Suggested solutions: • New skills will need to be learned by • Jeff Crowley pointed out that there Key Concerns and Proposed some organizations as they adapt has been no anger or political fights Solutions From Washington, D.C., to make sure they’re still relevant as surrounding HIV policy. One way to Town Hall Participants the NHAS and the ACA change the protect the NHAS is to make sure way people access healthcare. both political parties are recognized I. Feelings of Lack of Inclusion Among for their contributions in fighting Different Groups • Organizations can also benefit from the HIV/AIDS epidemic. Participants expressed a frustration informal alliances. For example, that the NHAS didn’t focus enough on the DC Community Coalition (DCC) specific groups, such as women, youth, sex for AIDS 2012 is a cross-section of V. Cuts to Ryan White and Long Waiting workers, drug users and the elderly. people living with and affected by Lists for ADAP HIV and AIDS that are working to Organizations face cuts to funding for the Suggested solutions: ensure that the Washington, DC Ryan White Program, which many people • To make more youth knowledgeable area’s voice is heard at AIDS 2012. living with HIV/AIDS rely on. In addition, about HIV/AIDS prevention and there continue to be many people on treatment, more HIV education waiting lists for assistance from ADAP. and prevention programs must be III. The Implementation of the NHAS funded. More efforts can be taken to During an Economic Downtown Suggested solutions: consistently normalize conversations The NHAS has come along right when the • The community must continue to about youth sexual activity. District of Columbia is moving through a work on challenges relating to the
7 the feedback (Continued)
implementation of the Affordable idea of integrating HIV prevention and health departments to come Care Act. As more people become treatment with other healthcare issues, up with priorities and needs for eligible for Medicaid, many of the having traditional healthcare providers, for technical assistance that the CFAR challenges surrounding the ADAP example, become the focal point for HIV investigators can help the local waiting lists will go away. prevention and treatment efforts. communities with.
• The ACA will also provide more Suggested solutions: people with access to private • Organizations that were developed IX. Lack of Domestic/International insurers, who can also pick up some to respond to the HIV/AIDS crisis Collaboration of the burden as HIV/AIDS programs must determine how they will There is a tendency to have separate face budgetary cuts. adapt to the changing needs in the conversations about global prevention healthcare system. and treatment efforts and domestic prevention and treatment efforts. In VI. Balancing Needs Surrounding HIV • Training centers are needed to make doing so, we often miss out on lessons with Those of Other Illnesses sure general medical service providers from each other. The ACA will usher in many changes. are equipped to adequately deal with Among them is the likelihood that people the needs of PLWHA. The knowledge Suggested solutions: living with HIV/AIDS will get more of their that AIDS Service Organizations and • African medical professionals can services from general medical providers HIV/AIDS Centers of Excellence have be included in some HIV/AIDS rather than going through ASOs. These amassed must be passed along to outreach, prevention and treatment medical providers won’t be focusing on those who will be treating people with strategies. HIV/AIDS exclusively; rather they will HIV/AIDS in the future. be concerned with the incidences of • Some of the nation’s CFAR other medical conditions and healthcare • Lessons learned from the response programs can benefit from sharing disparities, as well. to the HIV/AIDS crisis over the last lessons learned in African countries. thirty years can be applied to other Suggested solutions: global and domestic problems. • Efforts must be made for people • A holistic approach must be taken from different communities to talk to treating HIV and AIDS. Medical to one another. service providers must treat people VIII. Coordination Between with HIV and AIDS while also Academia, Government and Community ensuring that other illnesses are Organizations X. Sharing Scientific Advances screened for. Participants discussed the District of There have been a number of scientific Columbia Developmental Center for AIDS breakthroughs in fighting the HIV/AIDS • More research must be done about Research (DC D-CFAR), a collaboration epidemic. For example, studies have shown how various medical conditions between several DC-area academic that when people with HIV start taking impact HIV/AIDS. institutions and medical centers that aims antiretroviral (ARV) medications right after to increase HIV/AIDS research activities diagnosis, they are less likely to infect in Washington DC and contribute to others. There is also a lot of excitement VII. The End of ‘Exceptionalism’ the region’s prevention and treatment surrounding Pre-Exposure Prophylaxis Historically, prevention and treatment response to the epidemic. for HIV Prevention, or PrEP, which could efforts for HIV and AIDS have been interrupt acquisition of the HIV virus. performed separately from those of Suggested next steps: Participants worried that PLWHA are not other medical illnesses. However, with the • Encourage CFAR programs across getting access to information about these NHAS and healthcare reform comes the the country to work with local breakthroughs.
8 Suggested solutions: XII. Rights of Sex Workers and Drug Chicago • Use more media campaigns to alert Users at AIDS 2012 and Beyond Monday, November 14, 2011 people about scientific advances. There are immigration barriers in the United States for sex workers and drug 301 East North Water Street • Find people who can translate the users attempting to enter the country. Chicago, IL 60611 scientific findings to the everyday person. Suggested solutions: Speakers and Panelists • AIDS 2012 will include a hub A. Toni Young, executive director of • Make use of the ‘train the trainer’ dedicated to sex workers and drug Community Education Group; Oluwatoyin model by bringing together people users. (Toyin) Adeyemi, physician with CORE living with HIV/AIDS and teaching Center, Stronger Hospital of Cook County them about the latest treatments and • Technology, such as the Internet, and Rush Medical College, Division of breakthroughs and empower them can give people who can’t physically Infectious Diseases; Miguel Gomez, to go out into their communities and attend the conference access to it. director of AIDS.gov, Office of HIV/ share that message. AIDS Policy, U.S. Department of Health • Conference organizers are working and Human Services; Peter McLoyd, • Members of the HIV/AIDS with U.S. government officials to Consumer Development and Advocacy community must engage people ensure that conference participants coordinator, Ruth M. Ruthstein CORE who are not currently engaged in understand the U.S. visa and waiver Center, community Co-Chair UCHAPS; the fight against the epidemic. processes. David Ernesto Munar, president and CEO of AIDS Foundation of Chicago, AIDS • One town hall participant, who sits • Conversations must continue to 2012 Conference Coordinating Committee; on a PrEP working group within remove immigration barriers for sex Babafemi O. Taiwo, assistant professor in the United States Department of workers and drug users even after Medicine-Infectious Disease, Northwestern Health and Human Services, warned AIDS 2012. University Feinberg School of Medicine, that information that has not been Center for Global Health; Phill Wilson, thoroughly researched should not president and chief executive officer of be shared too soon because there’s the Black AIDS Institute, member of PACHA, a risk of giving people information and member of the AIDS 2012 Conference that turns out to be incomplete. Coordinating Committee.
Audience XI. Adequate Participation at AIDS 2012 Thirty-eight people attended the town hall. Participants discussed how the Black females were the predominant group International AIDS Conference may not be represented. Black males were the next accessible to many because of costs. largest group, followed by White females and White males. Suggested solutions: • Efforts must be made to provide Overview more scholarships. The political environment surrounding the ACA and the NHAS took center stage in • Efforts are being made to use Chicago at the third stop on the ROAD TO technology, such as the Internet, AIDS 2012 tour. The ACA and the NHAS both to give people who can’t physically face significant threats if Americans don’t attend the conference access to it. show their support, particularly in upcoming
9 the feedback (Continued)
elections, participants said. Those who to take on the HIV/AIDS epidemic to ensure that those diagnosed with HIV/ support legislation that helps people living with limited resources. AIDS remain in care. with HIV/AIDS must use events such as the RTA 2012 town halls to mobilize people to Suggested solutions: make their voices heard to their elected II. The Impact of NHAS on CBOs • People living with HIV/AIDS can be officials, as well as via the ballot box in 2012 As the NHAS redefines the way funding is trained to be peer educators. elections, participants said. allotted for HIV/AIDS prevention, care and treatment, many CBOs and ASOs will find • A buddy system can be developed, Key Concerns and Proposed that their roles will change. Organizations in which people who have been Solutions From Chicago that only perform one task, such as diagnosed with HIV/AIDS for a Town Hall Participants testing, may find that they’ll no longer longer period of time can be be financially supported as more focus is paired with those who are newly I. Lack of Funding Resources to Support placed on organizations that address the diagnosed. NHAS entire continuum of HIV/AIDS prevention, While there has been a lot of excitement care and treatment. • Funding mechanisms must be put in surrounding the development of the place to train members of the HIV/ NHAS, there has also been disappointment Suggested solutions: AIDS community to act as mentors that a significant amount of money did • Organizations with complementary or participate in a buddy system not come with it. Instead, the country is functions can merge. with those who have been newly experiencing an economic crisis that has diagnosed. led to spending cuts on the federal, state • Organizations may have to and local levels. restructure and come up with new • The HIV/AIDS workforce must skills and strategies. be better trained to design and Suggested solutions: execute community research. Some • Organizations can work together panelists and audience members and pool resources so that they can III. NHAS Ignores Drug Policy Issues expressed that many people who make more of an impact and won’t Town hall participants said the NHAS does will be providing care to PLWHA be duplicating efforts. not take into consideration issues of drug do not currently have the skills to policy. address the modern epidemic. • The HIV/AIDS community should make sure public officials realize Suggested solutions: that the community will hold them • The 12 Cities Project is bringing V. Political Threats to NHAS accountable to supporting the different agencies together to With the NHAS being implemented under Strategy. contribute to the conversation the Obama Administration, participants surrounding the epidemic. In asked what would happen to the Strategy if • A case can be made that providing working together, the different President Obama is not re-elected in 2012. funds for HIV/AIDS is an investment agencies are going to have to also in jobs growth in this country. It touch upon other social issues that Suggested solutions: will stimulate research and provide have an impact on the epidemic. • Members of the HIV/AIDS new opportunities for the scientific community must mobilize and get community to make a major impact. behind candidates who they believe IV. Keeping People with HIV/AIDS will have the community in mind. • Chicago and other metropolitan Engaged in Care areas across the country can learn Several town hall participants pointed out • Members of the HIV/AIDS from other countries that have had the need for community-level interventions community must make sure that
10 their elected officials understand revisited. Right now, the Ryan White that will be set up under the ACA through the importance of allocating Program fills in the gaps for those which individuals will be able to purchase resources to the HIV/ADS people with HIV/AIDS who have no health insurance using federal subsidies. community. other source of coverage or who As a result, immigrants with HIV/AIDS won’t have exceeded their coverage limits. be able to receive much of the care — With more public/private insurance including medications — that they will need VI. Political Threats to the ACA coverage becoming available to treat the disease. The Affordable Care Act is the subject of through the ACA, it’s important to much backlash among Republicans, many make sure that the “payer of last Suggested solutions: of whom have threatened to repeal it. resort” policy doesn’t lead to delays • A system must be set up to help or interruptions in care for people immigrants and others who may Suggested solutions: who need certain services. fall through the cracks of the new • The general public must be healthcare system. educated about the ACA and how it can help them. VIII. The End of ‘Exceptionalism’ Historically, prevention and treatment efforts X. Sharing Scientific Advances • Members of the HIV/AIDS for HIV and AIDS have been performed There have been many scientific community must mobilize and get separately from those of other medical breakthroughs in the prevention and behind the ACA. They must support illnesses. However, with the National HIV/ treatment of HIV/AIDS. However, town candidates who they believe will AIDS Strategy and healthcare reform comes hall participants wondered how to get fight for healthcare reform. the idea of integrating HIV prevention and information about these breakthroughs treatment with other healthcare issues, to the communities who need access to • The HIV/AIDS community must having traditional healthcare providers, for this information. hold political leaders accountable example, become the focal point for HIV to supporting the needs of people prevention and treatment efforts. As we Suggested solutions: living with the disease and moving move to a new healthcare system, town hall • Get more clinicians interested in toward an end to the epidemic. participants wondered how to make sure HIV/AIDS specialties. With more people living with HIV/AIDS continued to get clinicians focusing on the disease, all the care they need. there will be more gatekeepers to VII. The ACA’s Impact on the Ryan White this knowledge that can help filter it Program Suggested solutions: down to the patients. Town hall participants voiced concern about • A source of information on the ACA what will happen to the Ryan White HIV/AIDS is the Web site HIVHealthReport.org, • Increase routine testing for HIV, which Program, which works with cities, states and a site that explains how healthcare makes more people aware of the risks community-based organizations to provide reform will impact people living and gets people diagnosed sooner. services to more than half a million people with HIV/AIDS. annually, once the ACA goes into effect. • Make better use of nurses, • Cultivate patience through the pharmacists, peer educators and Suggested solutions: transition from one healthcare others who can be trained to provide • Participants stated that system to another. information to the community. government has voiced support for reauthorizing the program. IX. Impact of ACA on Immigrants XI. HIV/AIDS in Light of Other Disparities • Some participants suggested that Undocumented immigrants are prohibited Participants questioned whether a focus the issue of “payer of last resort” be from using the health insurance exchanges on HIV/AIDS takes away from the focus on
11 the feedback (Continued)
other health disparities among different latest information about prevention and New Orleans groups. treatment breakthroughs. Thursday, January 19, 2012 Suggested solutions: Suggested solutions: Marriott Hotel Downtown • It’s not a question of either/or, since • The HIV/AIDS community must take 555 Canal Street attention must be placed on both an each-one-teach-one approach to New Orleans, LA 70130 issues. spreading the word about the state of the epidemic. Speakers and Panelists • Many of the same people who are A. Toni Young, executive director of impacted by HIV/AIDS disparities are Community Education Group; Christopher also impacted by other health-related XIV. Role of Private/Public Partnerships H. Bates, director of the U.S. Department disparities. Disparities are particularly What role can public-private partnerships of Health and Human Services’ (HHS) Office seen in certain areas, such as the play in the fighting of the HIV/AIDS of HIV/AIDS Policy (OHAP); Dena Gray, HIV Northeast and the South. epidemic? prevention program manager, Bureau of HIV/STD and Viral Hepatitis Prevention, • Lessons learned from fighting the Suggested solutions: Community Health Services Division, HIV/AIDS epidemic can be applied to • The HIV/AIDS community must look Houston Department of Health and Human help eliminate other disparities. for opportunities to dialog with Services; Carl Kendall, professor and private industry about ways that director of Center for Global Health Equity, they can work together. Department of Global Community Health XII. Pessimism About the Future of HIV/ and Behavioral Sciences, Tulane University AIDS Care School of Public Health and Tropical One town hall participant voiced Medicine; Phill Wilson, president and frustration that so much emphasis was chief executive officer of the Black AIDS being placed on financial challenges. She Institute, member of PACHA and member felt that leaders in the HIV/AIDS community of the AIDS 2012 Conference Coordinating must take more of a can-do attitude. Committee.
Suggested solutions: Audience • Several panelists disagreed that leaders The audience was a mixture of residents in the HIV/AIDS community were being of the New Orleans area and participants overly pessimistic, but they expressed of the National African American MSM that it is important that the community Leadership Conference on HIV /AIDS and be educated about the realities and Other Health Disparities, which took place challenges that it is facing. during the same time at the Marriott Hotel. As a result, issues addressed not • An emphasis on the challenges only pertained to the New Orleans area, motivates the HIV/AIDS community but also to other cities across the nation into action. since participants in the conference came from all across the country. Sixty seven participants attended the town hall. Most XIII. Lack of Knowledge About HIV in were African-American females followed General Community by African-American males. The audience Many Americans have no idea of the also consisted of White males and White prevalence of HIV/AIDS, let alone the females, as well as Latino males.
12 Overview II. Ensuring That the South Receives funding is through state contributions. While the NHAS has facilitated much-needed Adequate Resources to Fight the HIV/ However, some states don’t contribute to discussion about the epidemic, it falls short AIDS Epidemic ADAP because of economic challenges on of meeting the needs of local communities There was a concern among town hall the state level. and young men at risk of acquiring HIV, participants that the Southern portion according to participants of the town hall. of the United States would not receive Suggested solutions: Some participants complained about a lack many resources to fight the HIV/AIDS • Pharmaceutical companies can of support from the federal government in epidemic. In fact, the 12 Cities Project, an pick up some of the slack. The implementing the goals of the Strategy. New effort launched by the U.S. Department community must also find new Orleans residents also complained about of Health and Human Services to sources of funding by building local barriers to fighting the epidemic.F or focus resources on 12 cities that make partnerships with private industry. example, one member of a local faith-based up 44% of U.S. HIV/AIDS cases, does organization described how efforts to not adequately represent the South, • CBOs need to form partnerships with conduct HIV testing in the schools have participants said. other organizations to raise money been thwarted by local laws. that can be put toward the crisis. Suggested solutions: Faith-based organizations and the Key Concerns and Proposed • The Department of Health and corporate community can help. Solutions From New Orleans Human Services is looking at Town Hall Participants creating different programs that • Community members should vote could focus on cities that are not for local and state officials who I. The NHAS’ Impact on the Local Level included in the 12 Cities Project. support their causes. Thanks to the NHAS, there is collaboration, coordination and partnership at the federal • One town hall participant described level with regards to fighting theHI V/AIDS the climate in Louisiana as being IV. Addressing the Needs of Young epidemic. However, on the local level many “conservative with its head stuck in African American Men organizations are not in sync with one another. the sand” when it comes to talking With the town hall made up of many Also, in many cases, the federal agencies don’t about HIV and AIDS. Participants participants of the National African have strong relationships with community then suggested that it would be American MSM Leadership Conference on organizations in the local communities. helpful if someone on the federal HIV /AIDS and Other Health Disparities, the level could help the state and local conversation turned to concerns outside of Suggested solutions: government to open a dialog. the city of New Orleans. One such concern • Members of the local community was what was being done to empower should speak with their legislators • Community based organizations young African-American men and help to to reinforce the importance of their must stay on federal agencies to prevent more of them from being infected. support. make sure grants are received in time and in full. Suggested solutions: • Organizations must look for ways that • Young people can attend the youth they can complement one another. program at the International AIDS III. Dealing With States That Don’t Conference. • Members of different communities Contribute to ADAP Funding can come together and create The AIDS Drug Assistance Program • More discussions must be held with a stronger voice. For example, (ADAP) is designed to provide HIV-related young people about sex and drug members of the local MSM prescription drugs to people with HIV/AIDS use and how they are related to community can unite with African who have limited or no prescription drug HIV. Such conversations must start American women. coverage. One of the ways ADAP receives when children are 7, 8 and 9.
13 the feedback (Continued)
• Conversations must begin at the support from the Health Resources and • Elect leaders who will change the local level. Services Administration (HRSA) and laws. funding agencies. • Better strategies for prevention • Go around perceived barriers. For must be developed. Suggested solutions: example, if you can’t do HIV testing • The community must find ways in the schools then you do it on the to support themselves and can’t sidewalks. V. ACA’s Impact on Ryan White Program wait for the federal government Town hall participants said the Affordable to rescue them. Again, community Care Act might be a great opportunity to based organizations were urged to IX. Loss of Money for Programs Such as get more people in care, but at the same work together to better handle the Needle and Syringe Exchange time many feared that the Ryan White transition to the ACA. Participants described a loss of funding for program wouldn’t grow or be funded. a needle and syringe exchange program. Another concern was whether community based organizations would need to partner VII. Lack of Knowledge of the HIV/AIDS Suggested solutions: with federally qualified health centers Epidemic From the General Public • There must be community pressure (FQHC) or transition to such. With medical breakthroughs allowing placed on local, state and federal people to manage and live with HIV/AIDS, government to move funds toward Suggested solutions: there is a tendency among Americans to necessary programs. • Members of the HIV/AIDS overlook the crisis, believing that it is not community must advocate for the an urgent health problem. • Partnerships must be pursued with programs deemed necessary. private industry to provide funding Suggested solutions: for some of these programs. • CBOs should build stronger • Education and public awareness alliances with federally qualified campaigns must be used to get the • More education must be done to health centers. word out. Prevention messages make people aware of the correlation must be geared toward different between drug use and HIV. • Discussions are being held between audiences. the federal government and state governments about Medicare and • People already living with HIV/AIDS Medicaid and how the ACA will can serve as educators. However, impact healthcare. Members of it is important to pay people living the HIV/AIDS community should with HIV/AIDS to serve in this role. be asking to be a part of these conversations. VIII. Laws Prohibiting Sex Education in the Schools VI. Fears of Lack of Federal Support Town hall participants pointed out that During the Transition to the ACA Louisiana does not have mandatory sex With the changes coming to the way that education. Making matters worse, local Americans receive their healthcare, local elected officials have prohibited HIV town hall participants were concerned testing and screening in the schools. that a lack of support that they perceive from federal agencies would continue. Suggested solutions: Participants voiced a desire for more • Work to change the law.
14 Birmingham Key Concerns and Proposed • Volunteers can provide Solutions From Birmingham transportation. Tuesday, January 24, 2012 Town Hall Participants Birmingham International Center 1728 Fifth Avenue N. I. Difficulties Keeping People from III. Lack of Peer Mentors/Role Models Birmingham, Alabama Falling out of Care Town hall participants decried the fact that One of the major challenges voiced at the there aren’t enough peer mentors and role Speakers and Panelists town hall was keeping people diagnosed models for people living with HIV/AIDS to A. Toni Young, executive director of with HIV/AIDS from dropping out of care. look up to. Community Education Group; Lauren CBOs and ASOs also often have a difficult Broussard, Public Health analyst with time keeping track of patients who move Suggested solutions: the U.S. Department of Health and Human from place to place. Some participants • Find funding to support programs Services (HHS), Office of HIV/AIDS Policy complained that a lack of manpower in that train PLWHA to be mentors (OHAP); Mary Elizabeth Marr, executive their organizations also contributes to the and role models. director of the AIDS Action Coalition in difficulty experienced in keeping PLWHA Huntsville, Ala.; Naina Khanna, policy in care. • Participants spoke of using director, WORLD U.S. Positive Women’s volunteers in this capacity. Another Network (PWN). Suggested solutions: option raised was launching volunteer • CBOs should hire people that programs in which participants can Audience can empathize with PLWHA. transition to paid outreach. Approximately 30 participants attended Peer mentors would give PLWHA the town hall. Audience members included someone to relate to. • CBOs that have diversity on their employees of CBOs and ASOs, healthcare staffs are more likely to engage a practitioners and people living with HIV/ • Community-based organizations diverse group of people living with AIDS. White females made up the majority and AIDS service organizations HIV/AIDS who can then evolve into of the audience. There were also Black must also hire a staff diverse in serving as peer mentors. females, White males and Black males. race, ethnicity and sexuality to relate to people in the community. Overview IV. Cuts to Funding of Programs The challenges involved with keeping HIV/ Participants spoke with much frustration AIDS patients from falling out of care II. Transportation Problems Keep People about budget cuts affecting their highlighted the discussion. “A lot of patients From Care programs. are falling out of care because they can’t Unlike in big cities where there is typically be tracked,” one participant said. “We have a public transportation system, rural areas Suggested solutions: patients come in for a first appointment in the South often require individuals • Community members must be more and never hear from them again.” In other to come up with their own method of vocal with their local, state and instances, people leave contact information transportation. Unfortunately, in many federal elected leaders. but when ASOs and CBOs follow up, phone instances, individuals can’t get to the numbers are disconnected or addresses doctor or support groups. • With this being an election year, are no longer current, participants people should look at the track described. Discrimination and stigma play Suggested solutions: records of those who are running a big role in this. “We see people under 30 • Organizations must seek alternative for office and support those still dying and the care is here but they’re funding sources from private candidates that seem willing to not accessing it because of the stigma,” donors, for example, that can be do more to impact the HIV/AIDS another participant said. used to go toward transportation. epidemic.
15 the feedback (Continued)
• Members of the HIV/AIDS reform comes the idea of integrating people involved with HIV/AIDS care community must look for ways to HIV prevention and treatment with other and treatment participate in the bring attention to the epidemic. healthcare issues, having traditional discussions about what essential healthcare providers, for example, become health benefits for their state will be. the focal point for HIV prevention and V. The Impact of the Affordable Care treatment efforts. That raises a number Act on Ryan White of questions, including how we end IX. Stigma and Discrimination Remain a Town hall participants voiced concern the ‘exceptionalisms’ surrounding HIV Major Barrier to Care about how the ACA will impact the Ryan treatment without losing excellence While stigma and discrimination White HIV/AIDS Program. in care. Town hall participants voiced surrounding HIV/AIDS are problems concerns that PLWHA will be forced to go across the country, they are particularly Suggested solutions: to health care providers that don’t offer egregious in the South, according • The community must mobilize in the care and emotional support of ASOs. to town hall participants. In fact, support of the Ryan White program. participants pointed out that it’s not Suggested solutions: unheard of for providers to say they • The community must participate in • CBOs and ASOs must find ways don’t want to treat people living with discussions about the future of the to facilitate this transition. There HIV/AIDS because that would discourage Ryan White program. are training and educational some of their other patients from opportunities that they can take coming to their offices. It’s often advantage of to help mainstream difficult to keep support groups going VI. InsufficientN umber of HIV/AIDS healthcare providers better because people aren’t willing to attend Medical Providers understand the unique needs of the support group for fear that others Despite an increase in new infections PLWHA. will recognize them and know that they in Southern states, there is a dearth have HIV. Another problem common of medical providers in the region, • Organizations that historically in the South is that the small-town particularly those who specialize in served only people with HIV/AIDS atmosphere means people often know treating HIV/AIDS. must expand their reach to service one another in the town. This could other parts of the population. lead to fears, for example, that the local Suggested solutions: pharmacist will know that a person has • Increase discussions between local HIV or a neighbor could see a person healthcare providers, government VIII. The State’s Role in Determining picking up her HIV medications. and medical schools about how to Essential Benefits get more physicians to consider Essential health benefits will be the a set Suggested solutions: specializing in HIV/AIDS care, or to of health care service categories that all • Some people living with HIV/AIDS get more physicians with an HIV/AIDS healthcare plans in a given state will have to must be willing to go public. By expertise to practice in the South. offer, starting in 2014 when the Affordable standing up and admitting to having Care Act is fully-implemented. Since the HIV, people will inspire others to do states will determine what these essential the same thing. VII. Concerns With Ending health benefits are for their residents, it’s Exceptionalism conceivable that healthcare benefit plans • The HIV/AIDS community must Historically, prevention and treatment could vary from state to state. come together to serve as a rallying efforts for HIV and AIDS have been point behind those who experience performed separately from those of Suggested solutions: discrimination from their families other medical illnesses. However, with the • Advocacy will have to take place at and friends. National HIV/AIDS Strategy and healthcare the state level. It’s important that
16 X. Lack of Knowledge About HIV From Fort Lauderdale but there are always the same people General Public at every single event,” one participant Many people wrongly believe that they Thursday, February 16, 2012 said. “Why is there not mobilization?” are not at risk of acquiring HIV because African-American Research Library The participant was referring to statistics they are heterosexual, practicing what and Cultural Center that show that Miami-Dade County has they believe to be monogamy and aren’t 2650 Sistrunk Boulevard the highest number of new AIDS cases per engaging in injection drug use. However, Fort Lauderdale, FL capita in the country, followed by Broward such thinking leaves people vulnerable. County — home of Fort Lauderdale — at Speakers and Panelists number two.1 Suggested solutions: A. Toni Young, executive director of • An effort must be made to reframe Community Education Group; Marsha Key Concerns and Proposed what risk looks like. People must Martin, director of the Urban Coalition Solutions From Fort Lauderdale be educated to understand that for HIV/AIDS Prevention Services; Joey Town Hall Participants risk can be found in any sexual Wynn, director of Public Policy at relationship. community service organization Broward I. Impact of Stigma House; Shelley D. Hayes, consultant for The National HIV/AIDS Strategy seeks to • There must be new ways explored UCHAPS and former chair of the American reduce the number of HIV infections and to talk about sex and HIV risk in the Bar Association’s AIDS Coordinating improve access to and outcomes from conservative South. Committee; Francisco Ruiz, senior quality care. Yet many people drop out of manager, Racial & Ethnic Health Disparities care or don’t seek care in the first place at National Alliance of State & Territorial because of the stigma that is associated AIDS Directors. with the disease.
Audience Suggested solutions: Approximately 44 participants from the • Church leaders can do a lot to communities of Fort Lauderdale, Miami combat stigma by bringing their and West Palm Beach. Audience members congregations together to talk ranged from people living with HIV/AIDS about sex and how people can to health care providers and employees practice safe sex and protect of community based organizations. The themselves from HIV. largest demographic represented were White males and Latino males. The Town • Ways must be found to normalize Hall also was attended by Black males, and HIV so that people consider it to be White, Latina and Black females. a medical condition such as Cancer, Lupus or Diabetes. More work must Overview be done to reframe HIV so that While the National HIV/AIDS Strategy is people know that anyone who is bringing new focus to the disease in the sexually active is at risk. United States, the southern part of the country does not always feel adequately • More funding must be allotted for represented and participation in the fight advocacy and community outreach against the epidemic is low, according so that people newly diagnosed to attendees of the town hall meeting. with HIV can see that HIV/AIDS is no “We have the highest rate of new HIV longer a death sentence. infections in Broward and Dade [counties]
1. According to the Florida Department of Health, Bureau of HIV/AIDS, Florida HIV/AIDS 2009 Update. 17 the feedback (Continued)
II. Fort Lauderdale’s Status as a models by going out into the VI. Legal and Political Challenges to the Shadow City community and putting a human ACA Because of its proximity to Miami, Fort face on the disease. Florida is the lead plaintiff in the 26-state Lauderdale finds itself a “shadow city” – legal challenge to the ACA. However, one whose needs and challenges may be town hall participants reported that state overshadowed by the larger metropolis. As IV. Ways to Galvanize Youth in HIV agencies are still looking at how people a result, Fort Lauderdale may miss out on Prevention Efforts will be impacted if the law holds up. [The funding and resources for fighting the HIV/ Participants said young people in Florida Affordable Care Act has since been upheld AIDS epidemic because they are instead have not been adequately targeted with by the Supreme Court.] Some town hall directed to Miami. HIV prevention methods, nor have they participants voiced concerns about what been mobilized to join the fight against the would happen if the law is repealed since it Suggested solutions: epidemic. has positive ramifications for people living • Because Fort Lauderdale is a with HIV, such as the elimination of pre- “shadow city” it’s more crucial that Suggested solutions: existing conditions as a basis for denying members of the local community • Recruit teen-agers for training health coverage. attend HIV/AIDS related events sessions and provide pizza and such as the International AIDS other incentives. Suggested solutions: Conference. It’s also important that • The community must make sure they speak up to their local, state • Strategies should be comprehensive elected officials know about its and federal representatives. rather than focusing on any support for the ACA. particular groups. • Instead of focusing on the challenge • People in support of healthcare of having limited resources, Fort • Education about HIV/AIDS can reform should take note of which Lauderdale residents must focus be passed from older to younger elected officials support it, and vote on the resources that they do members of society. those who don’t out of office. have. Partnerships can be sought with local businesses, CBOs and government officials to increase V. The Impact of the ACA on Ryan White VII. The Needs of the South are Often resources. Town hall participants voiced concern Underrepresented about how the ACA will impact the Ryan Town Hall participants voiced a frustration White HIV/AIDS Program, which provides because they felt that the needs of III. Complacency About the HIV/AIDS services to more than half a million people the South are often overlooked and Epidemic in the General Public annually. underrepresented in Washington, DC. The It’s difficult to keep people focused on economic challenges are different in the reducing HIV infections and improving Suggested solutions: South than in the North, participants said. access to care when they don’t think HIV/ • The Fort Lauderdale/Miami region Likewise, the issues of shame and stigma AIDS is a big problem. is already working to make sure the are sometimes more pronounced in the transition is as smooth as possible. South because people tend to be more Suggested solutions: conservative. • Advocacy and community outreach • The region already has a forum for are necessary to educate people interaction between Ryan White Suggested solutions: about the risks associated with HIV/ grantees, which is looking into the • The International AIDS Conference AIDS. Public awareness campaigns matter to determine how clients presents an excellent opportunity could help. People living with HIV/ who receive funding through the for the South to have its voice AIDS could also be used as role program will be impacted. heard.
18 • Members of the community Suggested solutions: Houston who would like to attend the • Use the 12-step program as a model Tuesday, March 13, 2012 conference can look into volunteer to deal with HIV/AIDS. Doing so opportunities and scholarships. could help with the shame and Hobby Center – Zilkha Hall They should also consider attending stigma associated with HIV since Houston, Texas the Global Village portion of the the 12-step program suggests that conference, which is free. “we didn’t cause it, we can’t cure it Speakers and Panelists and we can’t control it.” Steve Walker, deputy national political director for the Democratic Party; Donna VIII. Low Participation at HIV/AIDS-Related • Make sure that the issues of mental Crews, director of Government Affairs Events health and addiction are brought for AIDS United; A. Toni Young, executive One Town Hall participant pointed out up in healthcare conversations director of Community Education Group; that Miami-Dade and Broward counties concerning HIV/AIDS. Judy Levison, associate professor in the have the highest rate of new HIV Departments of Obstetrics & Gynecology infections in the country, yet there is and Community Medicine at Baylor College not a wealth of participation among of Medicine; Marsha Martin, director of community members at HIV/AIDS- the Urban Coalition for HIV/AIDS Prevention related events. Services; Phill Wilson, president and chief executive officer of the Black AIDS Suggested solutions: Institute, member of PACHA and member • Communicate more effectively of the AIDS 2012 Conference Coordinating about HIV/AIDS-related events. Committee; Rodney Ellis, Texas State There should be multiple methods Senator; Ann Robbins, manager of the HIV/ used for disseminating information STD Prevention and Care Branch at the to the community. Texas Department of State Health Services.
• Case management agencies are so Audience overwhelmed that they often don’t Attendance at the Houston Town Hall have time to tell clients about HIV/ meeting consisted of 63 registered AIDS-related events. In order to participants, many of whom were people facilitate better communication, living with HIV/AIDS, as well as those who case management agencies need work for community based organizations staffing help. and AIDS service organizations. The demographics of town hall participants included Black males, Black females, White IX. The Impact of Mental Health and males, White females, Latino males and Drug Use on HIV Latina females. There is a correlation between mental health, drug use and HIV. Participants said Overview that people with mental health issues and The political climate in Texas has made HIV/ those who are addicted to drugs need AIDS prevention efforts more challenging holistic care that looks at their mental than in some other states, but participants health or addiction issues, as well as their voiced a commitment to stem the epidemic. HIV risk. “It can be tough to focus on prevention strategies in Texas,” said State Senator
19 the feedback (Continued)
Rodney Ellis, one of the town hall panelists. education as the best way to approach the IV. Concern that the ACA Won’t Cover For example, the state’s conservative disease. Campaigns that focus on teaching Immigrants political leadership often touts abstinence- safe sex practices traditionally don’t With Texas being home to many in the only sex education as the best way to receive as much support. Latino community, a major concern at approach the disease. Campaigns that focus the town hall was that Latino men and on teaching safe sex practices traditionally Suggested solutions: women who are not legal citizens will don’t receive as much support, town hall • Make testing available in places not be covered under the Affordable participants said. Not only are political people visit every day. Establish Care Act. leaders often hesitant to address the HIV/ partnerships with local businesses, AIDS epidemic, but medical practitioners in such as drugstores, where people Suggested solutions: the state are often reticent, as well. Shame can come in to be tested. • Ensure that the Ryan White HIV/ and stigma often keep patients just as tight- AIDS Program and the AIDS Drug lipped, said panelist Ann Robbins, manager • Move from a prevention-only model Assistance Program remain in of the HIV/STD Prevention and Care Branch to a comprehensive education model existence as they will be needed to at the Texas Department of State Health that encompasses prevention. cover people who fall through the Services. cracks of the Affordable Care Act. • Offer monetary incentives to Key Concerns and Proposed people for getting tested. Town hall Solutions From Houston participants debated whether people V. Cuts to Part D of the Ryan White HIV/ Town Hall Participants would be more willing to get tested if AIDS Program they were awarded small monetary The Ryan White Program works with I. The Impact of the HIV/AIDS Epidemic rewards, such as $50 or $100. cities, states and CBOs to provide on the Male Population of Texas services to more than half a million Black men who have sex with men (MSM) people annually. Part D of the Ryan White are being impacted particularly hard. III. Difficulty Launching Programs Program deals specifically with health Town hall participants debated how to do Because of the Political Landscape care and support services that focus a better job targeting the male population Town Hall participants spoke of the on women, youth, children and infants with prevention messages without ignoring difficulty in setting up condom-distribution living with or affected by HIV/AIDS. the needs of women who are also at risk. programs and other outreach efforts Town hall participants pointed out that targeting populations at-risk of getting approximately $8 million has been cut Suggested solutions: HIV. Discussion revolved around ways that from Part D funding. • Encourage men to get tested the Houston community could get around earlier. Many men are learning that political opposition to such programs. Suggested solutions: they have HIV when it is at a more • The HIV/AIDS community must advanced stage. Suggested solutions: organize and fight for the • Mobilize people to vote for political continuation of the Ryan White • Encourage clinicians to be more candidates that support prevention program, as well as to get the proactive about promoting HIV and testing efforts. funds reinstated for Part D. testing among all men. • Organize with the goal of • A better job must be done of changing the makeup of Texas’ getting the word out about the II. Promoting Prevention and Testing in political representation to one impact of HIV/AIDS on women a Conservative State that embraces less conservative and youth, two groups that are The state of Texas’ conservative political programs that are geared toward impacted negatively by the cuts leadership often touts abstinence-only sex ending the HIV/AIDS epidemic. to Part D.
20 VI. Ensuring That the Needs of People Suggested solutions: with HIV/AIDS are Adequately Met by • Community members must vote • Use the National HIV/AIDS Strategy the ACA and mobilize in support of political as a blueprint for creating a Essential Health Benefits are a minimum candidates that support the HIV/ Houston HIV/AIDS Strategy. set of health care service categories AIDS community. Community members can come that have to be covered by health plans up with their prioritized goals for beginning in 2014 under the Affordable • People living with HIV/AIDS should dealing with the Houston epidemic Care Act. However, Essential Health be more vocal about their support and create a strategy around it. Benefits will not be determined by the of the Affordable Care Act and federal government; rather, they will be get the message out about how • Community members must be determined by individual states. Town hall healthcare reform directly impacts persistent in getting the word out participants discussed the importance of them. and convincing others to join efforts ensuring that the needs of people with to stop the HIV/AIDS epidemic. HIV/AIDS are adequately met via those Essential Health Benefits. VIII. Complacency About HIV/AIDS in the General Community IX. The Reinstatement of the Federal Suggested solutions: Town hall participants complained that Ban on Needle Exchange Funding • The Texas HIV/AIDS Coalition is a many people wrongfully believe that they In Texas, intravenous drug use is coalition that’s working on the local are not at risk of acquiring HIV. Town hall responsible for nearly 10 percent of and state-wide level to make sure participants spoke about the importance HIV transmissions in the state. In 2009, that the HIV/AIDS community is a of ensuring that everyone knows that risk President Barack Obama signed into law part of conversations about what isn’t relegated to a certain race or sexual an end to the ban on federal funding will be covered under Essential orientation. Everyone who has unprotected for needle exchange programs, which Health Benefits. sex is at risk. have been shown to cut down on HIV transmission via intravenous drug use, • Members of the HIV/AIDS Suggested solutions: town hall participants said. However, last community must speak out to their • Come up with ways to reframe HIV December, Congress reinstated the ban. political leaders to make sure that to push forth the message that the concerns of people living with HIV/AIDS is a human problem that Suggested solutions: HIV/AIDS are addressed. impacts everyone. • People must talk to their elected leaders and voice their support of • Some participants said it’s still syringe exchange programs. VII. Fear that the Affordable Care Act important to note particular will be repealed communities that are more • People concerned about the impact With 2012 being a presidential election heavily impacted than others. A of intravenous drug use on HIV year, there was concern that the election balance has to be struck so that transmission can organize hubs of a Republican candidate could lead everyone realizes they are at risk, during AIDS 2012 to discuss the to the repeal of the ACA. Town hall yet those communities that need issue. participants discussed their concerns more attention must be given the that the repeal of the ACA would hurt additional resources that they • People can vote out of office people living with HIV/AIDS. For example, need. elected leaders who are not in under the ACA, people living with HIV/ support of federal funding for AIDS would not be able to be denied • Educate clinicians to bring up syringe exchange programs. health coverage because of pre-existing screening for HIV during all medical conditions. visits.
21 the feedback (Continued)
New York assistant commissioner of the Bureau of II. Decreasing HIV Infections Among Gay HIV Prevention and Control in the city’s and Bisexual Men Thursday, March 22, 2012 Department of Health and Mental Hygiene. In New York, gay and bisexual men make Gay Men’s Health Crisis (GMHC) In the past, hundreds of babies were born up a large percentage of the HIV/AIDS 446 West 33rd Street each year with HIV, but “in the last year of population. Black men, in general, are also New York, NY 10001 data, there were three babies born positive an at-risk group, along with communities with HIV in New York State,” she added. But of color. At the same time, men are getting Speakers and Panelists some town hall participants living with HIV into treatment late. A. Toni Young, executive director of lamented the fact that New York is so far Community Education Group; Monica ahead of other parts of the country in terms Suggested solutions: Sweeney, assistant commissioner of the of HIV/AIDS care and treatment that they feel • Increase prevention efforts geared Bureau of HIV Prevention and Control their health will suffer if they ever relocate. toward people who are HIV positive, in the city’s Department of Health and “I came here in 2004 for services and I letting them know that unprotected Mental Hygiene; Ed Shaw, chair of the have 30 or 40 friends from Florida, Atlanta, sex can lead to re-infection. Also GMHC’s Consumer Advisory Board and New Detroit, Texas, Maryland and other states,” let community know that treatment York Association for HIV Over 50; Blayne one participant said. He and his friends share can lower viral load, making it more Cutler, director of the Bureau of HIV/ a common fear: “If we’re anywhere else we difficult to transmit HIV. AIDS Prevention and Control in the NYC may not receive care,” he said. Department of Health and Mental Hygiene; • Continue to educate Black men Marsha Martin, director of the Urban Key Concerns and Proposed about the need for regular Coalition for HIV/AIDS Prevention Services; Solutions From new york preventive healthcare, as well as Marcella Tillett, secretary of the NYC HIV Town Hall Participants HIV screening so that men with HIV Prevention Planning Group and UCHAPS can be diagnosed sooner. Steering Committee member; Sam Rivera, I. Better Collaboration Among Government, chair of UCHAPS; Janet Weinberg, GMHC’s Organizations and the Community chief operating officer. The National HIV/AIDS Strategy seeks to III. Providing Resources to Vulnerable reduce new infections. However, with Populations in New York Audience different segments of society working in Not all New York populations are specifically Attendance consisted of 65 registered silos, achieving that goal becomes more listed in the National HIV/AIDS Strategy, participants, many of whom were people difficult since people aren’t adequately but they still need increased resources for living with HIV/AIDS, as well as those who communicating about the needs of the HIV/ fighting the epidemic, town hall participants work for community based organizations AIDS community or the risk of acquiring HIV. said. Sex workers and transgender and AIDS service organizations. Black Silos also create discord among people who individuals, in particular, face challenges. males made up the largest demographic. are working toward the same goal. The town hall was also attended by Black Suggested solutions: females, White males, White females, Latino Suggested solutions: • Members of vulnerable groups males and Latina females. • Look for ways for community must make themselves part of organizations to partner with the conversation about HIV. They Overview government officials to promote should seek out community events Participants at the New York Town Hall programs that provide quality care to make their voices heard. marked New York City’s successes battling for people living with HIV. the HIV/AIDS epidemic, but raised questions • CBOs must do a better job of reaching about whether other parts of the country • Use conferences that bring together out to vulnerable populations and would ultimately catch up. “We’ve different groups to forge common making sure they are represented come a long way,” said Monica Sweeney, ground for building partnerships. when program decisions are made.
22 IV. Unequal Distribution of Resources Suggested solutions: provider or through organizations Across the Country • Create health homes where people that partner with the provider. Several participants expressed gratitude with a variety of medical needs that New York offers plenty of resources have a location where they can get • Advocate for adequate mental for PLWHA, but voiced concern that if they the services they need. health resources for people living ever left New York, they wouldn’t have with HIV/AIDS. those same resources available. • Continue to be vocal about the needs of people living with HIV/AIDS. Suggested solutions: VII. Fear that the Affordable Care Act • Efforts are being made in • Clinical providers who haven’t will be Repealed Washington to increase federal dealt much with HIV/AIDS in the With 2012 being a presidential election funding to cities that have not past must be educated about the year, there was concern that the election received as much funding in best ways to take care of people of a Republican candidate could lead the past. For example, the U.S. with HIV. Members of the HIV/AIDS to the repeal of the Affordable Care Department of Health and Human community can play a large role in Act. New York Town Hall participants Services’ Office of HIV/AIDS Policy this education process. discussed their concerns that the repeal has allocated $14.5 million each of the ACA would hurt people living with year for the next three years to help HIV/AIDS. southern states build an effective VI. Ensuring That Emotional and Social response to HIV. Care are Provided Under the ACA Suggested solutions: Providing quality care for PLWHA goes • Call elected officials and urge them • Under the Affordable Care Act, beyond wanting people to live a long life. to make sure the ACA stays in place. Essential Health Benefits will Other factors that impact the life of a ensure that there is a basic set of person with HIV include stable housing, • With the presidential election services that all people will receive emotional support and economic aid. around the corner, people must under their healthcare plans. vote for the candidate that will However, Essential Health Benefits Suggested solutions: provide the most support for the are determined at the state • Find people who are thriving while HIV/AIDS community. level. Members of the HIV/AIDS having HIV to show the community community must make themselves that it’s possible to have a great life a part of those conversations with the disease. VIII. The Impact of Stigma on People across the country. Living with HIV • Remain vocal about issues that Town Hall participants described the impact HIV/AIDS outcomes, such challenges of having to tell their families V. Impact of the ACA on Diseases Other as stable housing and emotional and friends about their diagnosis, Than HIV support. Let elected officials particularly since there is a stigma know about factors outside of the attached to an HIV diagnosis. With the Affordable Care Act being fully physical manifestation of HIV that implemented by 2014, the entire healthcare can impact one’s rate of survival. Suggested solutions: system will be revamped, impacting people • Ensure that people are linked to with all diseases, not just HIV. Participants • Advocate for medical homes to mental health resources when they discussed how HIV, which in the past has offer help with auxiliary services are diagnosed. been treated in a silo, will now be treated such as housing, transportation in medical centers that also treat other and rehabilitation, whether it • Make HIV a part of everyday diseases. comes directly through the clinical conversation.
23 the feedback (Continued)
• Make HIV screening a part of they’re living outside of the United Los Angeles routine medical care. States. Wednesday, April 11, 2012 • Create support groups and link • For those sex workers who are St. Anne’s Conference Center people living with HIV/AIDS to already in the United States, the 155 N. Occidental Blvd. groups that are appropriate for Global Village portion of AIDS 2012 Los Angeles, Calif. 90026 them. will include places where people can engage around the issue. Speakers and Panelists A. Toni Young, executive director of IX. Getting Youth Involved in Fighting • Community organizations must Community Education Group; Marsha the Epidemic reach out to sex workers and other Martin, director of the Urban Coalition for Town hall participants discussed the vulnerable populations who are not HIV/AIDS Prevention Services; Phill Wilson, challenges involved with getting youth to currently included in discussions president and chief executive officer of understand how they can prevent HIV, as surrounding HIV. the Black AIDS Institute and member of well as how they can mobilize to fight the PACHA; Francisco Ruiz, senior manager epidemic. Some also wondered how to find • The NHAS is a national strategy. for Racial & Ethnic Health Disparities at programs that would help parents discuss It’s up to various groups and the National Alliance of State & Territorial HIV and broach difficult topics such as sex populations to create their strategy AIDS Directors; Adrian McCall, HIV/AIDS with their children. for handling the HIV/AIDS epidemic. Regional Resource coordinator for the United States Department of Health and Suggested solutions: Human Services. • Let local elected officials know that there is support for having sex Audience education taught in the schools. Approximately 15 participants – including public health advisors, people affiliated • Use local networks to promote sex with CBOs and PLWHA -- took part in the and HIV education to young people. discussion. There were more females For example, family reunions can in attendance than males. Female have a health segment incorporated representation included Black, White to talk about general health, as well and Latina. Black males were also in as HIV prevention. attendance.
Overview X. Support for Sex Workers Community members debated whether the Some town hall participants complained best strategy to end the HIV/AIDS epidemic that sex workers are often not included in is by focusing on HIV-positive Americans conversations surrounding HIV. They asked or HIV-negative Americans. As part of the how they could ensure that sex workers NHAS implementation plan, more financial have a voice in the implementation of the resources will be allotted to treatment NHAS, as well as at AIDS 2012. than prevention. However, some town hall participants said that was a mistake since Suggested solutions: more efforts should be made toward keeping • Sex workers can organize hubs so people from acquiring HIV in the first place. that they can participate in the With the shift in focus, many community International AIDS Conference if based organizations who focus entirely on
24 HIV prevention among high-risk communities sex workers should work together efforts that they do launch are as will have to expand their scope to offer to draft a document that develops effective as possible. additional services if they’re going to stay a set of attainable goals that the alive as the NHAS is implemented. community will work toward. IV. Impact of ACA on Ryan White Key Concerns and Proposed • Sex workers must continue to There are some members of the local Solutions From los angeles advocate for their community. community who worry that some HIV Town Hall Participants programs such as the Ryan White Program will not be supported once the ACA is I. Reducing Infections in the Latino III. Shift in Resources Resulting from implemented. Should that happen, PLWHA Community the NHAS could be adversely impacted if they do Town Hall members discussed ways Town hall participants intensely debated not have the resources that they currently to mobilize that community, which is the wisdom of focusing more resources have today. particularly hard hit. on treatment than prevention. As part of the National HIV/AIDS Strategy, the Suggested solutions: Suggested solutions: majority of resources will be allotted to • Members of the HIV/AIDS • HIV/AIDS advocates can create efforts targeted to PLWHA. However, some community must participate in the more advertisements and public town hall participants said that was the implementation of healthcare reform. service announcements that can wrong strategy; they complained that Now is the time for the community be broadcast on Latino radio and more resources should be allocated to to let their local government leaders television networks. prevention in order to keep people from know that they still need HIV becoming infected with HIV/AIDS in the programs like Ryan White. • The community can spread the first place. Another result of the shift word about the impact HIV/AIDS is in resources is that community based having on the Latino community organizations that focus primarily on V. Concerns That the Affordable Care through social media, such as HIV prevention will have to expand their Act Will Be Repealed Twitter and Facebook. services in order to receive funding. Town hall participants pointed out that some members of Congress and certain Suggested solutions: presidential candidates are vowing to II. Exclusion of Sex Workers from the NHAS • Resources must be found to educate repeal the Affordable Care Act. The Town hall participants expressed the high-risk populations so that they concern among town hall participants was frustration of the sex worker community, don’t become HIV-positive. that PLWHA would be negatively impacted who believes that they have been excluded if certain portions of the ACA were struck from the National HIV/AIDS Strategy. • A prevention message can be down, such as the elimination of pre- spread by focusing on people who existing conditions as a basis for denying Suggested solutions: are HIV-positive, if those individuals coverage. • Different populations must are taught about ways to decrease understand that the NHAS does not the likelihood of transmission. Suggested solutions: speak directly to every group, but it For example, people who are • Community members must vote encompasses everyone. being treated for HIV and have an for local, state and federal officials undetectable viral load are unlikely who support the ACA, as well as • Different populations must come to transmit the disease to others. those that support legislation up with their own strategies for that is favorable to the HIV/AIDS dealing with the HIV/AIDS epidemic • Organizations must be creative community. in their communities. A coalition of to make sure that the prevention
25 the feedback (Continued)
VI. Ensuring that Los Angeles is people a better understanding of how Las Vegas Represented at AIDS 2012 to prevent the transmission of HIV. Town hall participants stressed the Monday, April 16, 2012 importance of ensuring that members • Programs should be gender Progressive Leadership of Los Angeles’s HIV/AIDS community are specific. For example, women’s Alliance of Nevada represented at AIDS 2012. groups can reach out to other 708 S. Sixth Street women. Las Vegas, NV 89101 Suggested solutions: • Members of the Los Angeles Speakers and Panelists community who attend AIDS 2012 VIII. The ‘Three Condom Law’ A. Toni Young, executive director of should also attend many of the Some town hall participants complained Community Education Group; Marsha pre-conference activities, which that in Los Angeles, HIV prevention efforts Martin, director of the Urban Coalition for will also provide information that were being hampered by what was referred HIV/AIDS Prevention Services. can be brought back to the L.A. to as the “three condom law.” According community. to participants, transgender women of Audience color were being unfairly targeted by law Attendance consisted of 15 registered • The free Global Village portion enforcement in such a way that if they participants who described themselves of the Conference provides were found to have three condoms in their as leaders of CBOS, community members skill-building and networking possession, they were being charged with and legal professionals. White males opportunities, giving Los Angeles prostitution. Several town hall participants made up the largest demographic. The community members a forum for and panelists said that this was their first town hall also included representation exchanging information about time hearing of such an action. from Black males, White females and dealing with the epidemic on a local Black females. level. Community members can Suggested solutions: also volunteer at the Conference; • Members of the transgender Overview volunteers can attend Conference community must get the word out Nearly two years after the White House sessions for free. about this practice. released the National HIV/AIDS Strategy, several Las Vegas residents complained • Los Angeles residents can host • Town hall participants vowed to that they know little if anything about hubs, mini-conferences in which bring this practice up with PACHA, it. Town hall participants said that there sessions from the conference are the Positive Women’s Network and has been little effort to ensure that recorded and telecast for free. the U.S. Department of Justice. the local community understands the Strategy. Younger town hall participants were particularly frustrated with the lack VII. Low Participation at HIV/AIDS- of communication about the Strategy. Related Events “Being that I’m in the 18-25 age range, I’ve Town hall participants complained that never heard of the Strategy,” said one the same people attend HIV/AIDS-related participant. But the lack of information events and it is extremely challenging to wasn’t unique to age. “I haven’t heard get new people to participate in efforts to much about it either,” stated another stem the epidemic. participant. “I think we’re doing a great disservice since it’s a year out and that Suggested solutions: information hasn’t been disseminated to • HIV prevention programs should the general population.” target schools and give more young
26 Key Concerns and Proposed efforts of smaller organizations, town hall V. Fear That the Las Vegas Community Solutions From las vegas participants said. Won’t Be Ready for the ACA Town Hall Participants The Affordable Care Act will change Suggested solutions: the way many Americans get access to I. A Lack of Knowledge About the NHAS • HIV organizations will need to healthcare. For example, many more low- in the Local Community partner with non-HIV organizations income people will get healthcare through Unlike many of the other RTA 2012 cities, if they are to survive the changes Medicaid, and more of the care for PLWHA Las Vegas was unique in that a majority that are being brought about will fall to general healthcare institutions of the people attending the town hall as a result of the NHAS and the rather than ASOs and CBOs. Some had never heard of the National HIV/ Affordable Care Act. participants expressed their concerns AIDS Strategy. As a result, rather than that Las Vegas would not be ready for the discussing how the Las Vegas community changes. was doing in the implementation of the III. Lack of Participation in the NHAS, most of the conversation revolved Community Planning Group Suggested solutions: around why people in the Las Vegas Members of the regional HIV CPG complained • Community organizations must community weren’t more aware of it. of little participation from the community. communicate with the general Among the reasons given for the lack of public to let them know how knowledge were a lack of communication Suggested solutions: healthcare reform will impact them. between the federal government and the • New strategies must be developed local Las Vegas community, and a lack of to reach out to African Americans, • CBOs must help one another and communication between the various CBOs Latinos and other groups who are look for ways they can partner with and ASOs in the Las Vegas area. not represented at the table. non-HIV organizations to make sure the transition to the ACA goes as Suggested solutions: smoothly as possible. • Improve the lines of communication IV. Keeping People in Care between the federal government While it’s important to get people with an and the state and local HIV diagnosis linked to care, it’s equally VI. Concerns With Ending Exceptionalism communities. important to ensure that they stay in care. Historically, prevention and treatment efforts for HIV and AIDS have been • Local leaders of the HIV/AIDS Suggested solutions: performed separately from those of community must take steps to • Efforts must be made to make other medical illnesses. However, with the determine how federal initiatives phone calls, send text messages and National HIV/AIDS Strategy and healthcare translate to the local community. make visits to ensure that people reform comes the idea of integrating are following through with their HIV prevention and treatment with other • Get the local community planning doctor’s visits. CBOs may be able healthcare issues, having traditional group (CPG) more involved with to partner with other healthcare healthcare providers, for example, become disseminating information about organizations to offer this service. the focal point for HIV prevention and HIV to members of the local treatment efforts. That raises a number community. • Sixty five to 70 percent of people of questions, including how we end the living with HIV see their doctors and ‘exceptionalisms’ surrounding HIV treatment stay in care, town hall participants without losing excellence in care. II. Lack of Cooperation Among CBOs pointed out. However, the other 30 Rather than collaborating and working to 35 percent who are likely to fall Suggested solutions: together to reach a common goal, many out of care are the ones who need • CBOs and ASOs must seek of the larger CBOs are hindering the the most attention. partnerships with non-HIV
27 the feedback (Continued)
organizations to help them to Suggested solutions: • Young people should apply to work effectively treat people with HIV. • Use the Internet to provide with various organizations such as In doing so, they can help educate information to the community the local CPG. other healthcare providers about about where they can get tested HIV and help clinicians who are not locally. • Increase use of technologies such comfortable dealing with HIV to as the Internet and social media to become more comfortable doing so. • Organizations must do a better job get the message about HIV/AIDS of making sure information gets out to the youth. • CBOs and ASOs will still be needed filtered down from the top levels of to keep people in care. the organizations to the community.
VII. Participation in AIDS 2012 IX. The Possibility of Home HIV Testing When asked how many people would be The U.S. Food and Drug Administration attending AIDS 2012 in Washington, DC, (FDA) is weighing the approval of an two audience members raised their hands. at-home HIV test developed by OraSure Conversation then turned to how Las Vegas Technologies Inc. If the FDA approves residents could benefit from information the kit, people will be able to learn about gleaned at the conference. their HIV status in the privacy of their own homes. However, town hall participants Suggested solutions: voiced concerns that a person who learns • Town hall participants discussed his or her HIV status at home may not have ways to attend AIDS 2012 without the mental capacity to deal with it. [The kit having to pay the nearly-$1000 has since been approved.] registration fee. Among the suggestions were attending the Suggested solutions: Global Village, which is free, and • Ensure that organizations provide volunteering at AIDS 2012. resources for people who learn their diagnosis at home. • Participants discussed the possibilities of hosting hubs, which are sessions from the conference that X. Lack of Communication to the Las are recorded and telecast for free. Vegas-Area Youth Members of the youth community who were in the audience complained VIII. Complacency About HIV Among the that they weren’t being targeted with General Public messages about preventing HIV nor given Many people in the Las Vegas area are information on fighting the HIV/AIDS unaware of their risk of acquiring HIV. epidemic. Town Hall participants discussed ways to get more members of the community to Suggested solutions: get tested for HIV. • Organizations such as the CPG should recruit young people because they will attract the interest of other young people.
28 Denver not be covered under the Affordable Care organizations would be deemed successful Act, said panelist Maria Lopez, program only if they have a high percentage of Monday, May 7, 2012 manager at the Denver HIV Resources clients with undetectable viral loads. Mi Casa Resource Center Planning Council. Panelist Joshua Blum, 360 Acoma Street a physician who sits on the Denver HIV Suggested solutions: Denver, CO 80223 Resources Planning Council, agreed, saying • Systems must be put into place approximately 20 percent of his patients to make sure people are following Speakers and Panelists are foreign born. through with their doctors’ Marsha Martin, director of the Urban appointments, taking their Coalition for HIV/AIDS Prevention Key Concerns and Proposed medications and making healthy Services; Lisa Cohen, Regional Resource Solutions From Denver choices. coordinator, U.S. Department of Health Town Hall Participants and Human Services; Maria Lopez, • Partnerships with CBOs and ASOs program manager at the Denver HIV I. Additional Strain on the Healthcare could be beneficial in that those Resources Planning Council; Joshua System organizations can reach out to Blum, a physician who sits on the Denver One of the goals of the NHAS is to identify PLWHA and help them to stay HIV Resources Planning Council; Penny as many people as possible who are living connected to their medical homes. DeNoble, founder of The Issue of Blood, with HIV/AIDS so that they can be linked an HIV/AIDS outreach organization that to care. However, town hall participants focuses on Black women and girls; pointed out that the Strategy may end III. Getting Youth Involved in the NHAS Robert George, regional director for the up working too well, leading the system Town hall participants said there is a need Colorado AIDS Project; Francisco Ruiz, to become strained by all of the newly for leadership development. Many people senior manager for Racial & Ethnic Health diagnosed individuals. who have been working in HIV for years are Disparities at the National Alliance of State burned out, and many young people don’t & Territorial AIDS Directors. Suggested solutions: see the urgency because medical advances • Healthcare organizations must have enabled PLWHA to live longer lives. Audience prepare now for an influx of new The Denver Town Hall meeting consisted patients as more people are Suggested solutions: primarily of federal government identified and diagnosed with HIV • Sexual health education must employees from such agencies as the as a result of NHAS efforts. be taught to young people since U.S. Department of Health & Human abstinence-only programs do not Services and the Department of Labor. • The healthcare organizations work, town hall participants said. Twenty four participants registered for must determine where the money the town hall. is going to come from for the • Use public events that draw a lot of increased testing that will be done young people to them as locations Overview as a result of the NHAS. for testing sites and educational While the National HIV/AIDS Strategy efforts. and Affordable Care Act will help many people with HIV gain access to more II. Concerns About How Successes Will quality care, participants at the Denver Be Measured IV. Foreign-Born Residents with HIV town hall meeting voiced concerns that When it comes to determining who gets Falling Out of Care many local residents will fall through the funding, organizations will be assessed One of the biggest concerns was that the cracks. One of the biggest concerns was on how well they will be able to meet undocumented foreign born population that foreign-born residents who are not the goals of the NHAS. Some town would not be covered under the Affordable U.S. citizens will lose care, since they will hall participants were concerned that Care Act.
29 the feedback (Continued)
Suggested solutions: VII. Educating the Community About • The community must find ways to • Advocate for endeavors such as Scientific Breakthroughs have conversations that go beyond the Ryan White Program to remain There have been a number of important the importance of condom usage. in existence so they can focus advances in science pertaining to HIV. Town People must be given enough resources on people who fall out of hall participants voiced concerns that the information to empower them to care as a result of the ACA. general community is not hearing about make educated choices about their the breakthroughs so they aren’t able to sexual health. understand and take advantage of them. V. ACA’s Impact on Ryan White and ADAP Some town hall participants described Suggested solutions: IX. Attendance at AIDS 2012 concerns that healthcare reform could • Grassroots activists must take it About six town hall participants said have unforeseen consequences that may upon themselves to get educated they would be attending AIDS 2012. The hurt PLWHA. For example, some programs about the latest scientific conversation turned to ways to make such as the AIDS Drug Assistance Program breakthroughs and take this sure the Denver community received and the Ryan White HIV/AIDS Program that information to their communities. information that is shared at the are designed to help people who currently Conference. don’t have healthcare coverage may shut • Women must demand that they be down since the ACA’s mission is to provide given access to trials and studies Suggested solutions: affordable health care for all Americans. that determine how different • Denver residents can apply to host Some participants also feared that safety medications and treatments affect hubs, which are sessions from net hospitals that provide care to people their bodies. the conference that are recorded who are uninsured and underinsured may and telecast for free to people in lose resources and be unable to help as • Resources must be refocused to communities across the world. many people. marginalized communities. • Denver residents can utilize other Suggested solutions: low-cost methods to attend the • Programs such as ADAP must VIII. Complacency About HIV in the Conference such as volunteering remain to help people who fall General Public and spending their time in the through the cracks of the ACA. Many members of the Denver community Global Village. are apathetic about HIV/AIDS because they don’t think it’s a big health crisis as VI. A Painful Transition to the ACA it was back in the 1980s when the disease Town hall participants expressed concerns that first surfaced. Because there have been there would be many bumps in the road as fewer public education efforts about HIV the country transitions to full implementation in recent years, people generally have less of the Affordable Care Act in 2014. While most knowledge about the disease as well as agreed that the kinks would be worked out, treatment and prevention efforts. there was a fear that many people would be negatively impacted during the process, Suggested solutions: namely minorities and low-income Americans. • There must be an increase in the number of places where people Suggested solutions: can get tested for HIV. For example, • People must be willing to allow summer events such as festivals that the kinks in the system to work draw a lot of people would be ideal themselves out. places to set up testing stations.
30 Seattle what they need, they’re not speaking out.” • The HIV/AIDS community can use King County, where Seattle is located, has a new tools such as social media and Wednesday, May 9, 2012 higher than average number of HIV-positive technology to reach out to people Lifelong AIDS Alliance people with an undetectable viral load, said who aren’t currently engaged in the 1002 East Seneca Street Chipps. That’s important since people with fight against the epidemic. Seattle, WA 98122 an undetectable viral load are less likely to transmit HIV. • More community meetings can be Speakers and Panelists established. Marsha Martin, director of the Urban Key Concerns and Proposed Coalition for HIV/AIDS Prevention Services; Solutions From Seattle B.J. Cavnor, director of Public Policy Town Hall Participants III. The Building of an HIV-Plus Agenda and Advocacy at Lifelong AIDS Alliance in Many factors fuel the HIV/AIDS epidemic, Seattle; Jake Ketchum, program manager I. Challenges in Getting Resources to including homelessness, poverty and at Seattle Area Support Groups; Jesse Certain Communities education, town hall participants said. As Chipps, Planning Council administrator While town hall participants described a result, any efforts to stem the epidemic for the Seattle HIV/AIDS Planning Council; a satisfaction with how the Seattle area must deal with these issues, as well as the Renee McCoy, assistant director of has managed the HIV/AIDS epidemic, they medical issues surrounding HIV. An HIV- Prevention Education at Lifelong AIDS pointed to some groups who have not Plus agenda would look at HIV, plus those Alliance. always received the resources that they other factors. need, such as those in rural areas and Audience minorities. Suggested solutions: An audience of 14 participants listened • People must stop working in silos. as panelists described the Seattle area’s Suggested solutions: As long as people view HIV/AIDS success in getting people with HIV/AIDS • The community must look to from their narrow perspectives, they identified and into care. White males increase the number of minority won’t consider the larger picture. and White females made up the largest physicians and minority healthcare demographics. Black females also providers to ease the comfort • More of an effort must be taken to were represented. Attendees included level of minorities when accessing deal with entrenched racism and PLWHA, caregivers of PLWHA, healthcare healthcare. poverty. providers and employees of community based organizations. II. Complacency Resulting from IV. Fear That the ACA Would Be Overview Seattle’s Successes Repealed Participants discussed the successes Seattle Because Seattle has done a better-than- Town hall participants discussed the fact has had in fighting theHI V/AIDS epidemic, average job of handling the HIV/AIDS that the Affordable Care Act faces political but complained about the complacency epidemic, there was concern that people opposition. Though healthcare reform won’t among some community members that would become complacent about all the be fully implemented until 2014, participants aren’t voicing their needs. “We’ve been so work that remains to be done. discussed how PLWHA will benefit from the incredibly lucky and we’re on the cusp of legislation. For example, PLWHA will not be sharing that luck with others through the Suggested solutions: able to be denied coverage because of pre- Affordable Care Act,” said panelist Jesse • Members of Seattle’s HIV/AIDS existing conditions. Chipps, planning council administrator for community must set new goals the Seattle HIV/AIDS Planning Council. “But for dealing with the epidemic. One Suggested solutions: I worry about people who are getting what such goal is the establishment of a • More people need to speak out in they need and because they’re getting Strategy for Washington state. favor of the ACA.
31 the feedback (Continued)
• Members of the HIV/AIDS community often keeps African successes of the Seattle area, but community must find a way to Americans from getting tested. also the challenges to let those convey a sense of urgency around in other countries know that the the issue of healthcare reform. struggle against the HIV/AIDS VII. Attendance at AIDS 2012 epidemic continues. Five town hall participants raised their V. Divisiveness in the HIV/AIDS hands to indicate that they would be Community attending AIDS 2012 in Washington, DC. As different groups fight for resources for The prohibitive costs of attending the their communities, an end result is that conference, which include registration separate factions get less accomplished fees, travel expenses and hotel fees, were than if they would work together. primary reasons that more participants Such divisiveness makes its way into would not be attending. conversations, so that people are often offended during conversations that are Suggested solutions: meant to educate about HIV/AIDS, and • Town hall participants discussed become unwilling to work together. volunteering as a viable way to attend the Conference for free since Suggested solutions: volunteers would be able to attend • Discuss ways for all people to sessions at no cost when they benefit from prevention messages weren’t working. and improved treatment for HIV/ AIDS, rather than singling out • The Global Village was pointed certain groups. out as an option for people to participate in AIDS 2012 at no cost since that portion of the Conference VI. Battling Stigma is free and open to the public. The shame associated with having HIV/ AIDS is often combined with other stigmas, • Town hall participants discussed such as the stigma of being gay. One of the hubs as a method of ensuring that results of stigma is that some people who members of the Seattle community would join in the fight against the HIV/AIDS receive the information that is epidemic stay away. shared at the Conference.
Suggested solutions: • Members of the HIV/AIDS VIII. Sharing the U.S. Plight with Other community can speak to their Countries family and friends about the work Town hall participants voiced a desire to that they’re doing. let the world know the truth about HIV/ AIDS in America. • The issue of homophobia must be addressed in the African-American Suggested solutions: community. Town hall participants • Paint an accurate portrayal of discussed how the stigma of the U.S. at AIDS 2012. Attendees homosexuality in the Black should make sure to describe the
32 Philadelphia Key Concerns and Proposed About half of the town hall participants Solutions From Philadelphia raised their hands to indicate that they Monday, May 14, 2012 Town Hall Participants would be attending the Conference. Philadelphia City Hall 1450 John F. Kennedy Boulevard I. The Need to Focus on Factors Outside Suggested solutions: Philadelphia, PA 19107 of HIV • Community members must mobilize A number of factors contribute to the to let as many people as possible know Speakers and Panelists spread of the HIV/AIDS epidemic, such as about the Conference and help them A. Toni Young, executive director of poverty and education. If those issues to make arrangements to get there. Community Education Group; Megan Warren, aren’t addressed, along with the medical Community members should make AIDS 2012 Hub coordinator; Phill Wilson, needs of people living with HIV, the goals it their goal to recruit people who president and chief executive officer of the of the NHAS will not be realized. are less familiar with the HIV/AIDS Black AIDS Institute and member of PACHA; epidemic to attend the Conference. Waheedah Shabazz-El, representative of Suggested solutions: the Positive Women’s Network; Francisco • Members of the HIV/AIDS Ruiz, senior manager for Racial & Ethnic community should make sure IV. Complacency Surrounding HIV in the Health Disparities at the National Alliance resources are allocated to address General Public of State & Territorial AIDS Directors; poverty, education, mental health One issue discussed at length by Philadelphia Senator Vincent J. Hughes, state senator and other areas that contribute to town hall participants was the lack of for Pennsylvania , representing the 7th the spread of HIV. participation among most general community Senatorial District; Sheryl Lee Ralph, HIV/ members at HIV/AIDS-related events. AIDS advocate and entertainer. • HIV/AIDS advocates should take a holistic view of HIV prevention rather Suggested solutions: Audience than fighting HIV from within a silo. • Those planning to attend AIDS 2012 A crowd of approximately 40 participants should bring different people to the included those affiliated with community conference than they normally see based organizations, members of local II. The Impact of HIV on Women at HIV/AIDS-related events. government and people living with HIV/ Town Hall participants discussed the fact AIDS. Participants included White males, that women — particularly Black women — • Members of the HIV/AIDS Black males, Latino males, White females, are being hard hit by HIV. community should strike up Black females and Latina females. conversations with those who don’t Suggested solutions: believe the disease to be a big deal. Overview • The Positive Women’s Network Philadelphia is working to make sure that will be hosting a preconference it has the biggest representation in the event for women living with HIV on V. Prohibitive Costs of Attending AIDS 2012 United States at AIDS 2012, according to July 21st from 10 a.m. to 5 p.m. in Some complained that the costs of attending participants at the town hall. Unlike some Washington, DC. AIDS 2012 were a barrier for many who of the other ROAD TO AIDS 2012 town hall don’t have thousands to allot to conference meetings, the majority of the Philadelphia registration and a week-long hotel stay. conversation revolved around figuring III. Ensuring Maximum Philadelphia out how to get the local community to Participation at AIDS 2012 Suggested solutions: Washington for the conference. About half Throughout the town hall, participants • Philadelphia residents can host of the attendees said they had plans to stressed their desire for Philadelphia to hubs, mini-conferences in which attend the conference, while a handful said have the largest contingent of attendees sessions from the conference are they would not attend because of the costs. at AIDS 2012 outside of Washington, DC. recorded and telecast for free.
33 the feedback (Continued)
• Groups that are interested in VI. Lack of Representation by Sex Dallas hosting hubs can work together to Workers at AIDS 2012 ensure that they all show different Some town hall participants complained Wednesday, May 16, 2012 sessions on different dates so all that they had heard nothing about Center for Community Cooperation people who are interested can programming for or representation by 2900 Live Oak attend as many hub sessions as sex workers at the International AIDS Dallas, Texas 75204 they’d like. Conference. Speakers and Panelists • When deciding to host hubs, Suggested solutions: A. Toni Young, executive director of Philadelphia residents should select • Panelists pointed out that sex Community Education Group; Dena Gray, sessions to show that are most workers could host a hub that would HIV Prevention Program Manager, Houston relevant to that local community. enable them to download sessions Department of Health and Human Services; that were of interest to that Ann Robbins, manager of the HIV/STD • Philadelphia residents can take part community. Sex workers could also Prevention and Care Branch at the Texas in free events such as the Global come up with their own plan for Department of State Health Services; Zach Village and the various marches addressing the HIV/AIDS epidemic Thompson, director of Dallas County Health that will take place during the in their community. and Human Services; Regina Waits, Regional Conference. HIV/AIDS Regional Resource coordinator for Region VI of the U.S. Department of Health • Volunteers at AIDS 2012 get free and Human Services. access to conference sessions. Audience • There is a broad range of housing Approximately 32 community participants for AIDS 2012 available, ranging — many of whom work for CBOs — as well from dorm rooms to hostels to as healthcare workers and PLWHA. White hotels. males made up the largest demographic, though the town hall included feedback • Philadelphia residents are close from Black males, Latino males, White enough to the conference to females, Black females and Latina females. commute, which would eliminate hotel costs. Overview The transition to the Affordable Care Act • Philadelphia residents who don’t and the impact of the National HIV/AIDS make it to the Conference can Strategy on community based organizations still find out about the sessions dominated the conversation. One of the by taking advantage of the media changes CBOs face relates to how people coverage that will be generated living with HIV/AIDS receive their care. In by bloggers and newspapers, as the past, prevention and treatment efforts well as an effort by the Black AIDS for HIV and AIDS have been performed Institute to publish updates from separately from those of other medical the Conference all week. illnesses. However, with the ACA and the NHAS comes the idea of integrating HIV prevention and treatment with other healthcare issues, having traditional healthcare providers, for example, become
34 the focal point for HIV prevention and and treatment, many CBOs and ASOs not be adequately informed about how treatment efforts. Much of the funding will find that their roles will change in the changes impact them and how they designated for HIV/AIDS will go toward regards to the epidemic. Many CBOs can ensure that they get the coverage organizations that are providing clinical will be forced to adjust their business they need. care. However, that raises a lot of questions models or they will have to close due to about what role traditional CBOs and ASOs a lack of support. Suggested solutions: will play in the future. • Members of community based Suggested solutions: organizations must first make sure Key Concerns and Proposed • CBOs must revise their business that they understand the ACA Solutions From Dallas models to incorporate funding so they can be sure to share the Town Hall Participants that comes outside of grants, information accurately with the such as reimbursement for health community. I. Implementation of the Enhanced services. Comprehensive HIV Prevention Planning • Efforts must be taken now to (ECHPP) Project • Organizations can seek to advocate for programs such as The Centers for Disease Control and partner with each other and Ryan White and the AIDS Drug Prevention (CDC) funded ECHPP, a three- clinical providers to provide Assistance Program. year project designed for the 12 cities with complementary services. the highest number of people living with IV. Concerns With Ending ‘Exceptionalism’ HIV/AIDS in the United States. As part of the • Organizations must figure out how Historically, prevention and treatment project, participating cities will conduct an to communicate their value to efforts for HIV and AIDS have been analysis of local resources, epidemiological potential funders. As attention is performed separately from those of profiles, efficacy and cost-effectiveness of paid to reducing community viral other medical illnesses. However, with the various interventions and strategies. The load, CBOs must show how their National HIV/AIDS Strategy and healthcare data will then be used to formulate goals, services lead to that end. reform comes the idea of integrating strategies and objectives to achieve NHAS HIV prevention and treatment with goals. Town hall participants discussed the • CBOs should make use of other healthcare issues, having challenges of the ECHPP project. consultants who can help them to traditional healthcare providers, for revamp their messaging, as well as example, become the focal point for HIV Suggested solutions: their business models. prevention and treatment efforts. That • The collaborations that result from raises a number of questions, including ECHPP can be used to launch new • Organizations can expand in terms how we end the ‘exceptionalisms’ partnerships and shared efforts in of the type and number of services surrounding HIV treatment without fighting the epidemic. that they provide. losing excellence in care.
• By working together and looking at Suggested solutions: the epidemic holistically, the HIV/ III. The Impact of the ACA on Ryan • ASOs must serve as educators AIDS community can better identify White and Other Uncertainties to those organizations that will gaps in resources. The consensus of town hall participants begin treating those with HIV for was that the ACA provides a great the first time. As ASOs re-invent opportunity to get more people in care, themselves, they can partner with II. The Ability of CBOs to Adjust to but at the same time, some participants organizations that handle other NHAS Changes feared that the Ryan White program diseases and provide a much- As the NHAS redefines the way funding wouldn’t grow or be funded. Another needed expertise in working with is allotted for HIV/AIDS prevention, care concern was that the community would PLWHA.
35 the feedback (Continued)
V. The Impact of Essential Health Benefits • Town halls can be held in zip codes VIII. Addressing the Impact of Stigma Under the Affordable Care Act, Essential with high infection rates to provide Stigma has always been a challenge that Health Benefits are a set of standards general education to people about PLWHA have faced. Not only has stigma ensuring that there is a baseline of prevention and care. prevented some from getting tested for services that all people will receive HIV or seeking care, but it has led others through their healthcare plans. However, • Healthcare providers must make to have a false sense of confidence that Essential Health Benefits are determined discussions about HIV and other they’re not at risk of acquiring HIV. at the state level so that baseline of sexually transmitted diseases a services may vary from state to state. normal part of the preventive Suggested solutions: Participants discussed the importance of medicine process. • Members of the HIV/AIDS making sure that PLWHA in Dallas have community must reach out to the services they need. • Prevention efforts must be geared policymakers, as well as members toward the social, sexual, familial of the general public to remind Suggested solutions: and drug using networks of the them that HIV demands attention • Members of the community must people who currently have HIV. and resources. take part in discussions about Essential Health Benefits that are held by state officials. VII. The Impact of the HIV/AIDS IX. Attendance at AIDS 2012 Epidemic on Youth Approximately seven people at the Dallas Town Hall participants discussed the fact Town Hall raised their hands to indicate VI. Complacency Among the General that there have been increases in HIV that they would be attending AIDS 2012. Community about the HIV/AIDS Epidemic cases among youth between the ages of 13 Cost was named as the biggest barrier to Town hall participants voiced a and 18. Conversation revolved around how more people attending the conference. concern that many people in the to better educate young people about the general community aren’t aware of importance of HIV prevention. Suggested solutions: the importance of prevention efforts. • Dallas residents can host hubs, While people directly impacted by HIV/ Suggested solutions: mini-conferences in which sessions AIDS are knowledgeable about the • There must be an HIV curriculum from the conference are recorded epidemic, more must be done to get the in the schools. and telecast for free to people in larger community to understand the communities across the world. inherent risks. • More efforts must be made to ensure that young people • Dallas residents can take part in Suggested solutions: understand the scope of the HIV/ free events such as the Global • Create more advertisements about AIDS epidemic and the importance Village and the various marches the importance of prevention. of prevention. that will take place during the Participants cited the Greater Than Conference. AIDS Campaign as one of the few • Organizations can use social media media initiatives. to attract young people. • Volunteers get free access to conference sessions when they are • Mobile testing units can continue • HIV/AIDS advocates can host not working. Town Hall participants to be used as methods to bring entertainment events that appeal discussed the possibility of HIV awareness and prevention to youth to get their attention volunteering as a way of cutting to different parts of the general and then include HIV testing and down on the costs of attending the community. awareness as a component. Conference.
36 Atlanta many Black Americans don’t participate in community, according to some town hall clinical trials or other research initiatives participants. Friday, May 18, 2012 that aim to improve treatment and find a Fulton County Department of cure. As a result, researchers don’t always Suggested solutions: Health and Wellness know how effective certain drugs will • CBOs must do a better job of 99 Jesse Hill Jr. Drive, SE – 5th Floor be when taken by Black Americans. The reaching out to the transgender Atlanta, Ga. 30303 Black community is also under-informed community and asking for their about how science is changing prevention input in HIV/AIDS prevention, care Speakers and Panelists methods, town hall participants said. and treatment efforts. A. Toni Young, executive director of Community Education Group; Dázon Dixon Key Concerns and Proposed • Members of the transgender Diallo, founder of SisterLove; Leisha Solutions From Atlanta community shouldn’t wait to be McKinley-Beach, southern regional Town Hall Participants invited to give their input; rather, coordinator for the Black AIDS Institute; they should attend meetings of HIV/ Francisco Ruiz , senior manager for I. Changes to HIV Prevention Strategies AIDS advocates and make their Racial & Ethnic Health Disparities at the One impact of the National HIV/AIDS Strategy voices heard. National Alliance of State & Territorial AIDS is a shift in how resources are allocated. As Directors; Marsha Martin, director of the more emphasis is shifted to “treatment as • Members of the transgender Urban Coalition for HIV/AIDS Prevention prevention” models, there is likely to be less community should view themselves Services; Rudolph Carn, founder and CEO funding for testing programs in areas that as part of the whole HIV/AIDS of NAESM. don’t have high rates of infection. That means community rather than view some testing efforts will be discontinued. themselves separately. Audience These changes will likely have a massive Approximately 31 registered participants, impact on community based organizations, including representatives from state leading some that focus entirely on III. Divisions Amongst Different and local health departments and prevention to potentially close. Communities people affiliated with community based Town hall participants discussed at length organizations, attended the town hall. Suggested solutions: the divisiveness among different groups that Black males and Black females made up • Community based organizations should be working toward the same goal. the largest demographic. Most participants will have to change the way in indicated that they had been working in which they do business. They’ll Suggested solutions: the HIV/AIDS arena for five years or more. have to expand their services and • Communities should stop competing Nearly half indicated that they had been do a better job of communicating for resources and pool their working in the HIV/AIDS arena for 10 to 15 the value of the testing that they resources so that everyone benefits. years. do. CBOs might also look for other organizations to partner with so • Communities should look for ways Overview that the testing they do facilitates to work together on projects, events The importance of educating the Black the goals that other organizations and other efforts to stem the HIV/ community about how science impacts are trying to accomplish. AIDS epidemic. HIV was top of mind as Atlanta residents gathered for the town hall meeting on May IV. Fear That the ACA May Be Repealed 18 – HIV Vaccine Awareness Day. In Atlanta, II. Lack of Resources for Transgender Town hall participants discussed the the face of the epidemic is largely African Community fact that the Affordable Care Act faces American. Black women and MSMs are One group that has not received its share political opposition. Though healthcare particularly impacted by the disease. Yet, of help from the NHAS is the transgender reform won’t be fully implemented until
37 the feedback (Continued)
2014, participants discussed how people Suggested solutions: down and have conversations with living with HIV/AIDS will benefit from the • Members of the community should them about the prevalence of HIV/ legislation. For example, PLWHA will not use the ‘Each One Teach One’ AIDS. be able to be denied coverage because of philosophy in which people who pre-existing conditions. know about scientific advances • Parents can let their elected leaders share that information. and schools know that they want Suggested solutions: sex education taught to all children. • CBOs and other members of the • Efforts should be made to train HIV/AIDS community must come peer leaders to go out and teach up with their own Plan B and others in their community. VIII. Attendance at AIDS 2012 Plan C if the Affordable Care Town hall participants discussed the Act does not withstand political importance of the International AIDS challenges. VI. Educating Black Americans About Conference and their ability to share Scientific Advances Impacting HIV/AIDS Atlanta’s successes and challenges with • Members of the HIV/AIDS Many Black Americans are also unaware of the world. Approximately 10 people raised community must educate other scientific advances that have impacted their hands to indicate that they would be themselves about the ACA and then the way HIV is treated, participants said. attending the Conference. help others to understand how it will impact them. Suggested solutions: Suggested solutions: • Members of the community should • Atlanta residents can host hubs, • Members of the HIV/AIDS use the ‘Each One Teach One’ mini-conferences in which sessions community must vote for political philosophy in which people who from the conference are recorded leaders who support the ACA, as know about scientific advances and telecast for free. well as other efforts that benefit share that information. PLWHA. • Atlanta residents can take part • Efforts should be made to train in free events such as the Global • More town halls can be held to peer leaders to go out and teach Village. educate people about healthcare others in their community. and the importance of supporting • Volunteers at AIDS 2012 get free the Affordable Care Act. access to conference sessions when VII. Getting Youth Educated and they are not working. Interested in Fighting the Epidemic V. The Role of Vaccines in Treatment Another group that would benefit from • Atlanta residents can contact and Prevention education efforts is youth, town hall local journalists and share their As the town hall meeting fell on HIV participants said. stories about HIV/AIDS in the weeks Vaccine Awareness Day, participants preceding and following AIDS 2012. spent a good deal of time discussing the Suggested solutions: importance of vaccine research. However, • CBOs and other members of the town hall participants stressed the need HIV/AIDS community can reach IX. Reaching Out to the Latino for more Black Americans to participate out to youth via social media, Community in vaccine research as well as other by blogging and tweeting about Atlanta town hall participants discussed clinical studies that can lead to improved scientific advances. the need for the Black community to work treatment options and eventually a cure more closely with the Latino community to for HIV/AIDS. • HIV/AIDS advocates can start with fight the HIV/AIDS epidemic. the young people they know and sit
38 Suggested solutions: Baltimore falls out of treatment, non-adherence • Organizations that focus primarily to an HIV treatment regimen has Monday, May 21, 2012 on the Black community can work public health implications, town hall on joint projects or host events with Medical Teaching Facility (MSTF) participants said. organizations that focus primarily 2nd Floor Auditorium on the Latino community. 685 W. Baltimore Street Key Concerns and Proposed Baltimore, MD 21201 Solutions From Baltimore • Members of one community might Town Hall Participants attend the meetings geared toward Speakers and Panelists the other community. A. Toni Young, executive director of I. Drug Use and the NHAS Community Education Group; Marsha While much attention has been given to Martin, director of the Urban Coalition the role that injection drug use plays in for HIV/AIDS Prevention Services; Warren the transmission of HIV, not enough focus Hewitt, AIDS coordinator at the Substance has been put on the role that recreation Abuse and Mental Health Services drugs and alcohol play in fueling the HIV/ Administration( SAMHSA). AIDS epidemic. In many cases, people under the influence of these substances Audience underestimate the potential impact of Approximately 17 participants — many having unprotected sex. of whom work for community based organizations, medical service providers Suggested solutions: and faith-based organizations — took part • HIV/AIDS advocates must begin to in the discussion. Among the attendees have conversations in the community were Black males, White males and Black about the impact of recreation drugs females. and alcohol on the epidemic.
Overview If the National HIV/AIDS Strategy is to II. The Link Between Behavior Disorders be successful, more attention must be and Treatment placed on identifying risky behaviors and One of the goals of the NHAS is to improve helping people to make lasting lifestyle access to and outcomes from quality changes, according to participants at care. In order for that to happen, people the town hall meeting. “When someone must stay in treatment. However, when comes in and says he’s a substance people living with HIV/AIDS have behavior abuser or depressed or bipolar, I want disorders that go untreated, they are more to see them treated for their behavior likely to drop out of care. disorders concurrent with treatment for HIV,” said Warren Hewitt, an AIDS Suggested solutions: coordinator at the Substance Abuse and • HIV treatment must be viewed in a Mental Health Services Administration holistic manner, so mental illnesses (SAMHSA). If the individual’s behavior and behavior disorders are treated disorder isn’t addressed, he or she isn’t along with the HIV. likely to remain in treatment, Hewitt added. While a person with hypertension • Drug users must receive treatment or diabetes only hurts himself when he for substance abuse as studies
39 the feedback (Continued)
show that when drug addicts of data and patient records VI. Getting the Baltimore Business receive treatment, their risk profile between organizations. Town hall Community Involved with HIV is lowered. participants suggested reaching More efforts must be made to make out to Baltimore’s technology the case that the entire community community to help with this would benefit from an end to the HIV/ III. Failure of NHAS to Address Social transition. AIDS epidemic. Since funding is an issue Factors for many CBOs, town hall participants Town hall participants voiced frustration • Staffs may have to be overhauled suggested getting the business community that certain social contributors to the HIV/ to make sure that those hired are to contribute to outreach efforts. AIDs epidemic have been overlooked. Among equipped to work with partner the factors contributing to the epidemic that organizations. Suggested solutions: need more attention are education, housing, • HIV/AIDS advocates must make the drug use and the impact of broken families. case to business owners that when V. Concerns With Ending ‘Exceptionalism’ the community is ravaged by HIV, it Suggested solutions: Historically, prevention and treatment leads to a loss in productivity and a • Funding must be solicited to deal efforts for HIV and AIDS have been loss in profits. with the social issues, as well as the performed separately from those of clinical issues. other medical illnesses. However, with the National HIV/AIDS Strategy and VII. Complacency Around HIV in the • More studies must be conducted healthcare reform comes the idea of General Public to look at the relationship between integrating HIV prevention and treatment Town hall participants complained that too various societal factors and the HIV/ with other healthcare issues, having many people believe HIV/AIDS is no longer AIDS epidemic. traditional healthcare providers, for a major problem. example, become the focal point for HIV prevention and treatment efforts. That Suggested solutions: IV. Integrating Medical Systems to raises a number of questions, including • HIV/AIDS advocates must use social Prepare for the Affordable Care Act how we end the ‘exceptionalisms’ media to reach young people, as When the Affordable Care Act is fully surrounding HIV treatment without well as others who are digitally implemented in 2014, community based losing excellence in care. connected. organizations must work more closely with hospitals, federally qualified health Suggested solutions: • Products can be used to spread HIV centers and insurers. In many cases, that • CBOs may have to expand the prevention messages. For example, will mean sharing data with new partners services they offer to address one town hall participant described and recording the results of different other diseases that impact his efforts to promote prevention by elements of patients’ care. CBOs will have communities, such as Diabetes and selling “safe sex” boxer shorts. to upgrade their record-keeping systems Cardiovascular Disease. and “integrate the medical system to be • Entertainment events can in sync with the Affordable Care Act,” • Organizations must also explore incorporate HIV prevention one town hall participant said. CBOs will how PLWHA are impacted by messaging. Celebrities and also have to make sure communication other ailments. For example, performance artists that draw between partner organizations is effective. many HIV patients are aging so crowds can be used to attract a they may be more impacted at large gathering; members of the Suggested solutions: this stage in their lives by diet HIV/AIDS community can share • CBOs may have to upgrade their issues such as sugar or salt information at such events. technology to facilitate the sharing consumption.
40 • HIV/AIDS advocates can partner San Juan medications are rationed, which makes with Baltimore-area researchers it more difficult for patients to adhere to that are looking for new ways to Thursday, May 24, 2012 their treatment regimen. Participants also get before new audiences and Centro Para Puerto Rico wondered how Puerto Rico fits into the groups. Research organizations Calle González #1012 National HIV/AIDS Strategy and whether the might be willing to provide funding Urbanización Santa Rita, Rio Piedras United States federal government could for organizations that are looking ensure that the NHAS was implemented for new ways to get HIV/AIDS Speakers and Panelists in both the 50 states and on the island messaging out to new people. A. Toni Young, executive director of of Puerto Rico. Panelist Margaret Wolfe, Community Education Group; Marsha assistant secretary for Family Health, Martin, director of the Urban Coalition Integrated Services and Health Promotion VIII. Participation at AIDS 2012 for HIV/AIDS Prevention Services; Sandra of the Puerto Rico Department of Health, With Baltimore being 45 minutes Torres, executive director of Bill’s Kitchen assured participants that officials are away from Washington, DC where the and member of PACHA; Margaret Wolfe, working to achieve the same goals with International AIDS Conference will take assistant secretary for Family Health, the Strategy in Puerto Rico as they are in place, town hall participants expected Integrated Services and Health Promotion the continental U.S. that the city would have a substantial of the Puerto Rico Department of Health; representation. Yvette Rodriguez, representative of Key Concerns and Proposed Puerto Rico CONCRA; Moises Agosto Solutions From San Juan Suggested solutions: Rosario, representative of the National Town Hall Participants • Baltimore residents can host hubs, Minority AIDS Council; Anselmo Fonseca, mini-conferences in which sessions co-founder of Pacientes de Sida Pro I. Reducing New Infections Among Youth from the conference are recorded Politica Sana; Ivette M. González Flores, Town hall participants voiced concerns and telecast for free. director of APPIA, Inc. that young people between the ages of 13 and 24 needed better prevention messages • Baltimore residents can take part Audience to ensure a decrease in the number of new in free events such as the Global Approximately 65 people — primarily Latino infections in that age group. Village and the various marches men and women — attended the San Juan that will take place during the Town Hall. Suggested solutions: Conference. • Community organizations must Overview implement programs that reach • Volunteers at AIDS 2012 get free Participants described a lack of young people where they are at. access to conference sessions when communication from government as well they are not working. as a lack of response to the problems • HIV/AIDS advocates must make use identified by the HIV/AIDS community. of social media such as Facebook, as For example, town hall participants well as technologies such as texting. complained that they were promised meetings with health department • Testing and education events officials, yet those meetings never took must be held at venues that place. Others complained that once their youth frequent, such as bars and complaints were heard, nothing was ever nightclubs. Rapid HIV testing can done about them. Town hall participants also be offered in the streets. also complained of challenges in getting services and prescriptions to people living • The Department of Health should with HIV/AIDS. In some medical centers, reach an agreement with the
41 the feedback (Continued)
Department of Education to have never happened. Participants said they for patients to adhere to their treatment sexual education taught in the felt that government officials talked regimen. Another problem raised was that schools. about creating an accessible healthcare the elderly and disabled communities system, but they did not follow through. must now make co-payments for clinical • Older people who are living with Participants also complained that the services and prescriptions, which is often a HIV can speak with young people Department of Health did not develop hardship, causing some to drop out of care. to let them know about the realities enough prevention programs. Others Town hall participants voiced concerns surrounding the HIV/AIDS epidemic. complained that contracts for services that an increase in people identified with provided by CBOs were not signed HIV would exacerbate the problem. by government and funding was not II. Changes to the Way HIV Funding is allotted as promised. As a result of the Suggested solutions: Awarded government’s failure to take action, • Ways must be found to eliminate As part of the National HIV/AIDS Strategy, people are becoming more ill and dying, administrative mistakes that can funding will be focused on high-impact participants said. impact PLWHA, such as missing prevention, meaning efforts that have the Medicaid forms. greatest impact on reducing the number Suggested solutions: of infections. As a result, some CBOs who • Community organizers must • Efforts must be taken to ensure used to receive funding may not receive it continue to request meetings with that more medications are available in the future unless they develop programs government and make their voices and affordable. that work in different ways, and basically heard. They must also be willing to change the way they do business. work with the Department of Health to look for solutions to problems. V. Applying Scientific Breakthroughs to Suggested solutions: Real Life • Organizations can work together • The Department of Health is looking Town hall participants discussed the many on projects, cutting down on the into ways to increase its budget so scientific advances that have impacted competition for proposals and that it can provide more funding the HIV/AIDS community in recent years. helping more people in the long run. help for medications. However, there is a need to apply the scientific advances to real world situations. • CBOs must ensure that programs • The government must remove Programs must provide education about are producing results. CBOs must barriers between itself and the the breakthroughs to PLWHA and create also work better with local health people in Puerto Rico. There must ways for people to benefit from these departments. be an easier way for community breakthroughs. organizers to share their concerns with government officials and there Suggested solutions: III. Lack of Support from the must be more accountability in • Leaders in the community must Government getting those concerns met. receive training in the use of Many town hall participants expressed ‘treatment as prevention.’ Once feelings of abandonment from government they receive the training, they can officials. Participants described a lack of IV. Challenges Receiving Prescriptions share the knowledge. communication from government as well and Services as a lack of response to the problems Some people living with HIV/AIDS have identified by the HIV/AIDS community. experienced challenges in getting VI. Lack of Public Policy Around Some described meetings that were prescriptions and services paid for. In Hepatitis C promised between health department some medical centers, medications are Many people in Puerto Rico are uninformed officials and community members that rationed, which makes it more difficult about the Hepatitis C epidemic that
42 impacts the local community. Few are discriminatory. For example, a person screened for it so many people have the living with HIV/AIDS might be represented disease without realizing that they have it, in an advertisement as a monster. Town Hall participants said. Participants complained that those images were not effective and they are offensive Suggested solutions: to people who are living with HIV. • Government and local organizations must find more sources of funding Suggested solutions: for addressing the Hepatitis C • The community must make its epidemic in the community. opinion about such advertisements known so that organizations realize • More work must be done to let the they are not effective. community know about Hepatitis C. • More thought must be used to • More testing locations must be set ensure that HIV messaging is up so that people can easily get respectful of PLWHA. tested. • Messaging should normalize HIV; it should not further perpetuate VII. Vulnerability of the Drug User stigma. Population Town hall participants described how drug users are vulnerable to HIV and Hepatitis C. They asked if there were plans to help this population not only through treatment of substance abuse but through needle exchange programs.
Suggested solutions: • In Puerto Rico, community based organizations that offer needle exchange programs receive funding from the state, not the federal government. As a result, they won’t be impacted by federal cuts.
• There are studies being done into drugs that can treat addiction.
VIII. Discriminatory Images in HIV/AIDS Messaging Town hall participants complained that some of the advertisements designed to promote HIV testing and prevention were
43 Community Input Surveys
ROAD TO AIDS 2012 was a nationwide tour to engage surveys. One hundred thirty-six (136) surveys were communities across the country in a conversation about completed online and 161 surveys were completed during the state of the HIV/AIDS epidemic in America in light of or after town hall meetings. Respondents represented 17 the National HIV/AIDS Strategy (NHAS); the Affordable states and two territories (Washington, DC and Puerto Care and Patient Protection Act (ACA); and the United Rico), were located in the Northeast, South, Midwest, and States’ hosting of the International AIDS Conference West, and included states with the highest numbers of (AIDS 2012) for the first time in more than 20 years. HIV and/or living AIDS cases. The series of town hall meetings were organized by the Community Education Group, the Urban Coalition for HIV/ Just over half of survey respondents (57%) provided AIDS Prevention Services, and AIDS 2012. A grant from demographic information. Of that group, 49.4% were the Merck Company Foundation supported the project. Black or African American, 41.7% were White, 5.4% The focus of ROADS TO AIDS 2012 was on the cities most were Asian, 3% were American Indian or Alaska Native, adversely impacted by HIV. ROAD TO AIDS 2012 was taken 1.2% was Native Hawaiian or other Pacifica Islander, and to other cities for diversity. Table 1 lists the complete list 7.7% reported other as race. Twenty-one percent (21.1%) of ROAD TO AIDS 2012 cities. identified as Hispanic/Latino. An equal number of males and females completed surveys (48% and 51%) and In addition to participants of the 16 town hall meetings, 1.2% (2) of respondents were transgender. Eighty-eight community members were able to provide input percent (87.5%) of respondents were between the ages community wide via online surveys. Paper surveys were of 26 and 65 with equal representation for each 10 year available at each of the town hall meetings to allow for age range. Six percent (6.0%) of respondents were additional input. Online surveys were submitted from between the ages of 19 and 25, 4.8% between the ages September 28, 2011 through June 23, 2012. of 66 to 75, and 1.2% were between the ages of 15 and 18 and over 75 years of age. The largest affiliation was of SURVEY RESPONDENT DEMOGRAPHIC PROFILE community based organizations (CBO) and AIDS services Two hundred and ninety-seven (297) respondents from organizations (ASO) – 31% of respondents. The next 40 cities across the country and two international cities largest group was people living with HIV/AIDS (PLWHA) (Calabar, Nigeria and Kampala, Uganda) completed (20%) who tended to also identify as advocates (11%).
TABLE 1
Atlanta*...... 5/18/12 Fort Lauderdale...... 2/16/12 Philadelphia*...... 5/14/12 Baltimore*...... 5/21/12 Houston*...... 3/13/12 San Francisco*...... 9/30/11 Birmingham ...... 1/24/12 Las Vegas...... 4/16/12 San Juan*...... 5/24/12 Chicago*...... 11/14/11 Los Angeles*...... 4/11/12 Seattle ...... 5/9/12 Dallas*...... 5/16/12 New Orleans...... 1/19/12 Washington, DC*...... 11/3/11 Denver...... 5/7/12 New York*...... 3/22/12 *12 Cities Project
44 The remaining respondents represented local and state on local strategy development; and conferences with health department, Ryan White planning councils, city consumers and HIV service providers. or state prevention planning groups, federal agencies, faith based organizations, school systems, and state Respondents reported implementation of Enhanced and local government. Other affiliations included non- Comprehensive HIV Prevention Planning (ECHPP) and profit organizations, health care providers, universities, the 12 Cities Project in response to NHAS. However, business managers, community advisory board members, respondents in only three of the 12 cities (Atlanta, Chicago, and a consulting firm. and Philadelphia) referenced the project.1 Specific activities being implemented in town hall cities included: NATIONAL HIV/AIDS STRATEGY The majority of respondents (80.5%) had previous • Testing knowledge of NHAS and learned about NHAS through • Linking people to HIV care a variety of sources, including non-NHAS websites • Generating plans (30.9%), the NHAS website (25.7%), HIV/AIDS conferences • Organizational specific activities and initiatives (22.8%), public service announcements (18.4%), and • Collaborations town hall meetings (15.4%). The most frequently cited • Outreach conference for getting information was the National HIV Prevention Conference. Respondents also reported getting Emphasis has been given to early identification of people information about NHAS from community planning groups, living with HIV and testing in non-traditional settings. their employers, Ryan White Planning Councils, the media, Among the testing strategies discussed was routine and the AIDS.gov and Whitehouse.gov websites. HIV testing at detention centers, urgent care centers, county emergency room and federally qualified health Sixty-seven percent (67.2%) of respondents have known centers (FQHC). Support for making testing in health care about NHAS since it was developed and disseminated. A settings is being given and a number of cities are utilizing few people reported being involved in the development social network testing to identify high risk, hard to reach and/or advocacy process. Seventy-five percent (75.3%) of populations. Some cities have allocated additional funding respondents have read NHAS and 63% (62.7%) have read for HIV testing and others are implementing large scale the implementation strategy. testing as well as targeted testing in areas with high HIV prevalence rates. A Los Angeles respondent reported that LOCAL IMPLEMENTATION the rapid-rapid testing algorithm (RTA), administering Forty percent (40.4%) of respondents discussed local two rapid test in one setting, is being implemented. implementation of NHAS. Of that group just under half Many of the testing efforts are accompanied by linkages (42.5%) stated that they did not know what programs to HIV care, “test and treat.” Linkage to HIV care has related to NHAS have been implemented in their cities been incorporated into state prevention funding in some or indicated that nothing was being implemented. jurisdictions and linkages to care has been made part of There was no difference in knowledge of what was testing contracts in some cities. Respondents reported being implemented in community members completing enhancements of outreach programs to re-engage surveys before or after town hall meetings. Of cited PLWHA in HIV care. In Houston, data sharing has been activities, the most frequent was meetings. Across established between the county and health department to the country meetings were being held to discuss local easily link newly diagnosed individuals into care. implementation of NHAS. Meetings included ad hoc meetings with planning councils and community planning In several cities, NHAS implementation planning is underway. groups; forums, summits and panel discussions; town Community leaders and stakeholders are rethinking HIV hall meetings to both inform community members and prevention and examining how to align HIV prevention generate strategies; planning council presentations; and community planning with NHAS. The Delaware population-specific and regional workgroups focusing Comprehensive Plan was mentioned as a model that
1. Town Hall meetings were conducted at 11 of the 12 Cities – no Town Hall meeting was held in Miami. 45 community input (Continued)
some community planning groups plan to use. In Illinois, The ranking in six town hall cities — Atlanta, Birmingham, workgroups were assembled to address implementation Dallas, Fort Lauderdale, Los Angeles, and Seattle of NHAS goals and a draft document was presented at the — mirrored the overall ranking. Las Vegas survey State HIV/STD conference. Respondents from Detroit, New respondents also identified the same top three barriers York (New York City Health Department Initiatives) and San in a slightly different order. No political will to implement Francisco mentioned the development and implementation NHAS and lack of organization among stakeholders were of city specific plans. Denver and San Francisco respondents frequently cited barriers in several cities: reported that plans that operationalize the goals and objectives of NHAS were being implemented in their cities No political will to Lack of organization prior to the release of NHAS. Some respondents described implement NHAS among stakeholders efforts being implemented by single organizations such as youth programs, grassroots community outreach efforts, • Chicago • Fort Lauderdale advocacy, and use of outreach to link individuals to HIV care. • Dallas • New York • Denver • Los Angeles In Birmingham, survey respondents reported that the • Fort Lauderdale • San Francisco Mayor of the city is pushing collaboration. Philadelphia • Houston respondents indicated that the Ryan White Part B • New Orleans program is collaborating with the prevention program of • San Juan Pennsylvania Department of Health to facilitate linkage to care. Other cities reported collaboration among agencies Respondents in only two cities, Las Vegas and Seattle and merging of organizations in response to NHAS. identified the complexity of NHAS as a barrier.
The most frequently cited barriers to the local COMMUNITY INVOLVEMENT AND COMMUNICATIONS implementation of NHAS were poor communication Survey respondents who were affiliated with HIV/AIDS between stakeholders (64.3%)and insufficient funding to through the health department, community based facilitate collaboration and coordination (63.7%), followed organizations (CBO), AIDS services organizations by no culture of collaboration on the local level(40.9%). (ASO), planning groups, and similar organizations (54% of respondents) were most knowledgeable about implementation activities. PLWHA, representatives What barriers do you see to carrying out NHAS in your of faith based organizations, and school system city? (check all that apply) representatives (25%) were least knowledgeable and most likely to say they didn’t know what was H A. Communications Between being implemented. Despite a quarter of respondents Stakeholders, 64.3% being unaware of implementation activities, just G A B. Not Enough Funding to Facilitate under 80% (79.2%) were aware of methods used to Collaboration and Coordination, 63.7% engage community members in the implementation of F C. No Culture of Collaboration in the NHAS. The most frequently cited methods used were Local Level, 40.9% community meetings and forums (49.3%), outreach D. No Culture of Collaboration on the (48.9%), and town hall meetings (40.7%). In addition E Federal and State Level, 32.7% B to traditional channels such as the health department, E. NHAS is too Complex, 8.8% HIV planning councils, and community prevention D F. No Local Political Will to Really planning groups, survey respondents mentioned C Implement NHAS, 35.1% the National Council of Negro Women and the local G. Local Stakeholders are not Black Leadership Commission on AIDS as groups that Organized, 33.3% have sponsored events that facilitated community H. Other, 12.9% involvement.
46 Respondents suggested that progress reports given at Some community members could be trained as community meetings and forums (45%), social media promotores that operate as community and patient (39%) and progress reports posted on local or state intermediaries who assist patients to process and websites (31%) were all useful in communicating progress support families and educate vulnerable individuals in the on local NHAS implementation. Several respondents community. Respondents pointed out that it is important recommended media, including radio, print, online news, to address the drivers of risky behaviors, such as alcohol press releases, and media coverage. Use of media was the and drug abuse, limited education, and access to food and most frequently recommended strategy for ensuring that housing. Utilizing community members as workers would affected communities are involved in decisions about NHAS create jobs and begin the process of reducing poverty and implementation. On the local level, survey participants increasing job opportunities. recommended advertising, marketing, television and radio We need to make sure interviews, public service announcements, and social Communities that are hardest outreach happens in media. Overall, survey respondents expressed the need to hit by the epidemic should be high risk zip codes, provide affected communities with information. In addition targeted using workers who speak with the populations to media, recommendations included working through the language and are trusted by grassroots organizations, formal organizations such those communities. Those targeted highly impacted. We as planning councils and groups, community meetings, should include jails and highly need inside workers to and training on “what’s happening in your community.” impacted populations. Prevention speak their language Similar recommendations were made to engage affected messages and efforts should be and feel trusted by communities on the state level. In addition to strategies targeted to those communities. the community. We proposed at the local level, respondents suggested Community level interventions that advertise in a highly involving state level politicians and state level departments significantly involve members of targeted way to that and initiatives (such as the Texas Black Women’s Initiative). affected communities should be On the national level, survey respondents suggested implemented. Consideration should community. We go to public service announcements featuring the President be given to structural interventions their health centers. of the United States, Senate leaders, and the Speaker of that are effective and designed We invest in their the House. Other suggestions included a national month to reach entire communities, and health in a bigger way. for NHAS to promote HIV prevention and health care. social marketing campaigns that Respondents recommended conducting White House town have a local focus and move people –Survey respondent hall meetings at local venues, such as Morehouse College into action. Survey respondents and regional workshops. maintain that though emphasis should be on communities with high rates of HIV, if attention is not given to low Shifting From Low to High Impact Activities incident areas, rates will increase in those areas. Utilization of grassroots approaches was recommended to step up HIV prevention efforts in communities with the Survey respondents recommended testing, linkage highest rates of HIV. Survey respondents recommended to care, and follow-up to support adherence. Routine creating community level workgroups that would examine opt-out testing should be supported. Free, community what is effective for specific communities. Affected based HIV testing should be made available. populations should be included in creating a plan of Communities with high rates of “late testers” should action. Efforts should be made to go directly to PLWHA be targeted for more frequent testing. Testing should who are receiving services, engage them, and capture be continued in non-traditional venues. Private medical their recommendations and input in decision making. providers should be encouraged to offer HIV testing Survey respondents suggested forming coalitions with to their patients regardless of perceived risk factors. local businesses, schools, and service providers to Resources should be devoted to encouraging routine organize activities. Survey respondents recommended testing and increasing availability of services for utilizing community members as community workers. individuals who test positive.
47 community input (Continued)
Interventions for PLWHA, Educating Americans and general health, not just HIV, including comprehensive sex Expanding Prevention education in schools. HIV/AIDS education, sex and sexuality Survey respondents indicate that emphasizing must be normalized to reduce stigma. Education should interventions that work for PLWHA while simultaneously also emphasize personal responsibility and the importance educating Americans about the threat of HIV requires of staying negative – HIV is a lifelong disease. balancing strategies and messages. Respondents recommended ensuring sufficient resources are available Survey respondents asserted that though it is important to ramp up prevention for positives. PLWHA should to have efficient HIV treatment strategies in place, we do receive ongoing education on the benefits of anti- not want to inadvertently decimate programs that target retroviral treatment (ART) and medical care should be those who are not positive and are greatest risk for HIV accessible. For PLWHA, the emphasis should remain on infection. Structural and community level interventions treatment, the positive things they can do for themselves were recommended to expand targeted prevention to improve health outcomes, and reducing stigma. PLWHA efforts. Survey respondents emphasized that prevention should be involved in the development of intervention is as much an emotional issue as it is an educational for PLWHA. Decision makers should seek out PLWHA and issue. It is important to address underlying factors that solicit information on effective strategies. contribute to HIV risk and have a strong association with HIV. There is a need to make an investment in programs, Show the real face Media campaigns should be such as: of AIDS! Show the developed and implemented to raise outcomes of AIDS. awareness and help the American • Homelessness, including affordable and sustainable public understand that HIV is a public housing Place more emphasis health emergency. There is a need • Mental health as a measure to address and cope on what happens WHEN to do a better job of illustrating the with stress you get AIDS and less value of preventing infections and • De-stigmatizing mental health on IF you get AIDS. early treatment. HIV needs to be • Economic challenges put back in America’s living rooms • Access to health care and containing the cost of –Survey respondent through media saturation. Strategies health care could include billboards, public service announcements, and community conversations. Community level interventions should be utilized in a Mainstream media could be used to make HIV an everyday sensitive way that recognizes the social economic level of conversation. Respondents recommended a national mailing community members, as well as the age, race/ethnicity, from the President and Surgeon General that explains that and gender. There is a need to lobby for research to HIV is still a problem in the United States. Public service develop appropriate structural interventions with public announcements should show the real face of AIDS. health strategies for community level interventions in targeted communities. Survey respondents encouraged The testimonies of PLWHA can be used to educate the a continuum of prevention and care services asserting general public about HIV and HIV prevention “without that people who are at risk for HIV are the ones living sugarcoating.” Long term survivors should present with HIV tomorrow. Respondents suggested funding to conferences about their positive and negative experiences demonstrate collaboration between existing prevention living with HIV at colleges and universities around the and HIV care programs with outcomes that have country and in public schools. On a local level, events benefited communities. should be created that will facilitate conversation about HIV and HIV prevention among neighbors. Involvement Recommended strategies suitable for reaching from schools, churches, private enterprise, and medical populations difficult to bring to scale focused on establishments in HIV/AIDS education should be seeking input from members of the populations; encouraged. Place educational focus on comprehensive outreach through face-to-face contact and social
48 media; and utilizing gatekeepers to gain access. Survey Efforts should be evaluated quarterly and communicated respondents recommended engaging populations to the citywide planning groups. Agencies should begin (such as transgender, youth, individuals who are to plan staffing that will allow for combined approaches homeless, sex workers, prisoners, Native Americans, integrated into one program. Survey respondents and Asians) in planning, policy, program development, recommended that the programs should be included in and implementation. Decision and policy makers should the compendium of prevention approaches. Collaboration seek input from these populations on how to reach among federal agencies and joint funding opportunities members of the populations and how to best meet could facilitate integration of approaches. their needs. Members of these groups could be hired to conduct outreach or trained as community health Survey respondents suggested that increasing workers and peer educators. Efforts should be made to coordination of HIV prevention, treatment, and care identify gatekeepers who are trusted brokers and can begins with conceptually removing the silos from pass on messages to bring people into care and form “prevention” and “treatment and care.” Respondents local partnerships with the populations. Collaborate indicate that we have to stop trying to differentiate the with organizations with a track record of serving a given three. All are important and should be kept together population and encourage their use of community based because it will take all three to end HIV disease. On an approaches. Survey respondents recommended a variety organizational level, service providers should be educated of outreach activities to both provide education and to to understand that prevention is treatment and treatment seek input on appropriate strategies. Outreach includes is prevention. They are not separate systems and services the use of texting and social media. should be integrated within agencies. Within agencies, integration may require cross training staff. There should Integration and Coordination be more collaboration between organizations. Community In response strategies to combine biomedical, behavioral, organizations should look at the services they offer and and structural approaches integrated throughout examine how they can consolidate and partner with other program activities and demonstration projects, survey organizations. Mutual, reciprocal collaboration would be respondents focused primarily on biomedical and beneficial to clients – each agency could capitalize on its behavioral approaches. Survey respondents indicated strengths rather than all compete for the same services that it is time to start implementing some of the or attempt to provide all services. biomedical approaches that have been shown to be successful by prevention research, such as circumcision Coordination and collaboration can be facilitated by and pre-exposure prophylaxis (PrEP). Simultaneously, funding as well as become a requirement for funding. respondents maintain that there is a need to translate Survey respondents indicate that current funding these strategies for CBOs and ASOs. Development of a structures do not support coordination and collaboration tool box (PrEP or TAP) for CBOs and ASOs accompanied and identified insufficient funding for these activities as by a well strategized campaign to educate them on a barrier to NHAS implementation. In addition to making what and how the tools in the box can be used. At the collaboration a contract requirement for funding, funding same time, medical professionals should be educated on periods and reporting requirements could be streamlined. behavioral approaches and other interventions that reach Respondents recommended increased communication the most impacted populations. and collaboration among funders and stakeholders along with the elimination of the prevention/treatment/care The combination of strategies should be individualized silos. by city and based on analysis of the HIV and population landscape. Gatherings where researchers, clinicians, Locally, there should be truly combined planning groups. and behavioral risk reduction program leaders can come Support for community planning groups should be together and collaborate on strategies to increase benefit expanded, particularly support for assistance and care and perhaps reduce or stabilize costs should be hosted. prevention to allow prevention and care planning groups
49 community input (Continued)
to collaborate and work together. Leadership on the approach addressing multiple needs and issues – federal level should be provided to eliminate barriers including structural, environmental, social, and political. to coordination and integration. Formal relationships and coordination between prevention and care planning Survey respondents suggested looking outside of the bodies should be mandated. HIV prevention plans federal government for funding opportunities. This should apply to the same geographical area as HIV care would include private funding, corporate sponsorships plans and the plans should be developed jointly. Survey and partnerships, and foundations. Make an investment respondents recommended better coordination between in lobbying for tax breaks for companies and local the public and private sector to serve PLWHA and people businesses that step in to fill the gaps. There should at high risk. be better integration of non-government funding into planning activities at the city, state, and national levels. In addition to consolidating planning groups, funding should be aligned so that all federal funding is on the Holding providers accountable and eliminating waste same fiscal year. Health and Human Services (HHS) were recommended. Programs that are successful should treatment and care funding should work more closely continue to be funded and funding should be withdrawn with Centers for Disease Control and Prevention (CDC) from programs that are not producing effective results prevention funds at the national level. Consideration or organizations that are not meeting their agreed should be given to placing all funding under one umbrella. upon obligations. Efforts should be made to ensure that Groups should join together and talk about sexually funding is spent as directed, budgets in administrative transmitted diseases as a group and discontinue the branches and divisions should be reduced to what is practice of separating HIV from other diseases with the necessary, and some bureaucratic positions should be same risk factors. eliminated. Use of volunteers was also recommended. Volunteers could provide HIV education and facilitate Leveraging Resources support groups. Professionals could be recruited to Collaboration, non-government partners, reward provide pro bono counseling services. efficiency, and use of volunteers were recommendations to leverage limited resources at a time of shrinking PATIENT PROTECTION AND AFFORDABLE CARE ACT budgets. Survey respondents suggested that (HEALTH CARE REFORM) organizations should network to reduce duplication of Seventy-eight percent (77.5%) of survey respondents services. Agencies could form partnerships and share have known about the Affordable Care Act (ACA) since it comparative best practices on a municipal, federal, and became law. They learned about ACA primarily through state level. Respondents recommended that agencies television or radio (36.6%), the internet (18.9%), and should identify resources that are most needed in a through a variety of sources (16.6%). Other sources jurisdiction and combine funds to respond to community included the newspaper, place of employment, advocacy needs. There should be an increase in collaboration organizations, and planning bodies. Most respondents among providers with incentives for brand based believed that health care reform will benefit the local collaborations. In addition to collaboration among HIV Ryan White program (55.2%). service providers, respondents suggested ensuring that HIV prevention becomes an integral part of the work Preparation and Local Plans funded by the Substance Abuse and Mental Health Local plans to address changes in health care services Services Agency (SAMHSA) and the Department of under health care reform include educating community Justice (DOJ). HIV should be integrated with other organizations and medical providers, assuring that diseases and health conditions and overall health care PLWHA understand how they will be impacted, creating should include HIV care. Beyond health care, efforts health homes, and transitioning services to FQHCs. should be made to reduce bureaucratic barriers and Survey respondents in six RTA cities and Tucson, Ariz., restrictions for specific activities that facilitate a holistic described local plans (See Table 2).
50 Survey respondents reported that more collaborations Table 2: Local Plans Described by Survey Respondents and partnerships will be needed. Cities have formed speaker’s bureaus to provide education about ACA, local Chicago programs have initiated studies to better understand Many public health services will be transitions to FQHCs implications for Ryan White programs and to guide – a collaboration of many community based service strategy development, and community organizations providers with medical settings. This affords a greater are being encouraged to diversify their health focus. appreciation of the continuum of prevention to care. Respondents assert the need to incorporate Ryan White programs into health care reform. Quality improvement, Denver meaningful use, and patient centered should be The Colorado Trust Fund has funded grassroots efforts characteristics of medical homes. In some cities, health to be a change agent around health care. Strategies will care reform has been mentioned in local comprehensive include Comprehensive Sexuality Education and Medicaid HIV prevention and care plans. Health Homes.
A few respondents discussed cutbacks and concerns New York regarding changes in care. The need to address housing Health homes will be created. New York State is issues and immigration reform were also mentions. implementing Health Home incentives via Medicaid Reform. This is different than the federal primary medical Integrating HIV into Broader Health Care homes, but similar to facilitate cost savings. Survey respondents indicated that preparation is needed before HIV prevention, treatment, and care can Philadelphia be successfully integrated into broader health care. Offer support for suburban free clinics. The strategy is Assurances are needed that HIV patients will have in the introductory phases and will involve strategizing access to quality care in a broader health care system. with HIV/AIDS organizations such as Philly Fight, GALABI, Because of stigma, it is not yet widely seen as a chronic ASIAC, and BEBASHI. disease. It was recommended that our government needs to really demonstrate that HIV/AIDS is a chronic San Francisco San Francisco will expand access to low income individuals by bringing them to a medical home. Local How do you believe health care reform will impact plans include community education and engaging CBOs in the local Ryan White programs? conducting community education about ACA.
A. Complement the Local Tucson Program, 21.5% A Educating the populations as to how ACA will impact them. B. Enhance and Improve the F People are afraid they will lose what little they have and Local Program, 18.0% efforts are underway to reassure and educate them. Plans C. Allow the Local Program to also include maintaining patients in care and working more Serve More People Living closely with other service providers. Tucson is looking into with HIV/AIDS, 15.7% Medical Home Models and Behavioral Health Home Models. E B D. Compromise the Local Program, 14.5% Washington, DC D E. Have No Impact on the Though there are no concrete plans at this point, the Local Program, 1.2% C strategy is to quickly implement ACA. Move people from F. I Don’t Know, 29.1% Ryan White programs to Medicaid and develop a strategy to implement insurance exchanges.
51 community input (Continued)
condition. Health departments, community officials, and Responses were very varied. Some respondents talked medical providers all need to become familiar with what about specific programs: the other is doing. Health care workers, the general population, and physicians should all be instructed • Social Network Testing on how to deal with PLWHA or at risk for HIV. Medical • Hip Hop for HIV providers should be saturated with HIV educational • Strategies for getting Black MSM I the door with opportunities. Positions should be created for health desired incentives for HIV testing. Gaining trust and care advocates who speak “regular folk” and break linking them to care in culturally sensitive ways things down with the doctor and patient and follow up • Broward County, Part D making a difference in the if appointments are missed. Education and awareness lives of women efforts should also be targeted to PLWHA. PLWHA • HIV Care happening for Latino community should understand their personal financial stake in • Organizing elder females from DC as research health care reform. partners • Prevention services for HIV and Substance Abuse Respondents recommended increasing the capacity focused on not getting involved in at risk sex of local health clinics to provide HIV care in culturally • Metro Teen AIDS in DC competent ways and establishing collaborations between • Using community viral load as a tool for looking local health care providers and ASOs with providers and at prevention and care needs and understanding the positive community working together. There should where the epidemic is be systems to ensure that HIV prevention and treatment • DC Community Coalition: outreach to youth are part of all health care conversations and HIV testing • San Francisco Model of Care – test, treat, and link is routine. Local programs should be integrated to make • San Francisco Harm Reduction, working with MSM services work for everyone through conversations with and Needle Exchange local coalitions, alliances, and universities. Plans should • Illinois Culturally Competency with Asians and be made to create a network of service providers that Pacific Islanders service all needs. • Integration of behavioral health into HIV primary care clinic Medical homes can increase access to health care for • HIV-Syphilis testing Taskforce everyone, including the uninsured. These homes must • Philadelphia Critical Path founded by Kyoshi address the community need for preventive health care. • Philadelphia chapter of ACT-UP Ryan White funded primary care providers should be • San Francisco care for undocumented immigrants required to accept Medicaid payments to expand access • Pennsylvania Center for AIDS is hosting a post to health care. conference hub
INTERNATIONAL HIV/AIDS CONFERENCE 2012 (XIX Desired Lessons Learned from Other Countries INTERNATIONAL AIDS CONFERENCE) Survey respondents would like to import lessons learned Eighty-five percent (85%) of survey respondents have in other countries about treatment access, adherence, never attended an International AIDS Conference reducing stigma, reaching “hard to reach” populations, and 63% (62.5%) are likely to attend AIDS 2012 in and working with sex workers. Respondents reported Washington, DC. Of the 26% indicating they are not that France and Canada do not have a waiting list for likely to attend, limited resources (81%) was the most the AIDS Drug Assistance Program (ADAP) and Brazil frequently cited reason for not attending offers guaranteed access to treatment. There is interest in learning ways to reduce cost, especially through the Sharing Local Successes use of generics, and increase access to ART – how do Less than 30% (28.3%) of survey respondents described you do more with less money? Respondents would like to local activities that they wanted the world to know about. know about how to promote adherence and campaigns to
52 reduce stigma – ways to make HIV easy to talk about and individuals live longer with their families and the end discrimination by keeping it in the mainstream. There appropriate support. Respondents suggested that is benefit in collaborating with individuals from other PEPFAR has shown that there are limitations to countries and forming better global community initiatives. abstinence only approaches. They also stated that PEPFAR illustrates the importance of having a strategy Several respondents discussed community spirit and use of and goals. Lessons learned from implementation of the community health workers. Information is desired on the strategies to scale up existing programs can then be barriers encountered and how countries worked through delivered on a large scale. These are lessons that can be them in a manner that encouraged community involvement. applied to our current implementation of NHAS. Respondents would like to learn how low income countries use community health workers to educate PLWHA and empower them to improve their health and their behavioral decisions. Respondents assert that many other countries have far more extreme poverty levels, minimal health care, and more dire economic situations We need to stop than the United States but are able to do huge work in reversing thinking we are better incidence by using community based than everyone else workers. and behaving like our knowledge and Survey respondents are expertise is it – I interested in how Uganda made guess I am saying we HIV a heterosexual disease can learn humility and supported comprehensive education, access, and testing. from resource poor They are also interested in how countries. Uganda communicates with its youth and in prevention –Survey respondent marketing materials from Europe and Brazil. Respondents would like information on needle exchange and gender based violence interventions. Respondents ask, how do you create safety for sex workers? What strategies create safer and healthier sex industries, including reducing discrimination, improving access to health, and promoting sex work communities? How were countries able to establish need exchange programs in jails and prisons?
Lessons Learned from the Success of PEPFAR Survey respondents indicated that from the success of PEPFAR, we have learned that biomedical prevention works and that ART can be effective in the most challenging situations. Respondents maintain that PEPFAR success indicates treatment is prevention through the reduction of community viral load. Clean needles and reducing the viral load saves lives and
53 post-event evaluations
Introduction improvements in the implementation of NHAS in their The post event evaluation questionnaire collected town cities (3.70) and how health care reform will impact local hall participant self-report of perceptions of increased HIV programs (3.82). Typically, participants felt that understanding of the National HIV/AIDS Strategy (NHAS); the panel provided them with information (4.28) but the impact of the Affordable Care and Patient Protection Act tended to be less satisfied with the panel helping them (health care reform) on local HIV/AIDS programs; the utility to understand the role of community members in the of panelists in facilitating understanding of the two policies; implementation of NHAS. organization of the event; convenience and accessibility of the town hall meeting; time allocations; and motivation Participants of the town hall meetings in San Francisco, to attend the international HIV/AIDS conference in 2012. A New York, and San Juan indicated low levels of 5-point Likert scale was used with 5 points representing satisfaction with the opportunities to share concerns strong agreement with questionnaire statement and 1 and ideas and time allotted for community dialogue. representing strong disagreement with questionnaire The comments of participants in each of those cities statements. The scale included 17 rated items and two open suggested that the panel presenters did most of ended questions. The open ended questions requested the talking leaving little time for comments from participant perceptions of the most critical highlight of the community members. Chicago was the only city to give town hall meeting and recommendations for improving subsequent town hall meetings. Means were calculated to TABLE 3: Overall Satisfaction determine levels of satisfaction. Satisfaction Meeting Participant Satisfaction Ranking Rating City Order Post event data were collected from 216 town hall 1 79.7 Denver, CO 11 participants in 15 cities. Town hall participants gave the 2 75.7 Washington, DC 2 town hall meetings an overall rating of 69% (68.7%). 3 75.6 Philadelphia, PA 13 Overall ratings of satisfaction ranged from 80% (79.7%) 4 75.2 New Orleans, LA 4 to 57% (56.9%) in San Juan. Table 3 illustrates the 5 73.9 Dallas, TX 14 ranking of satisfaction levels and the order of the town 6 73.9 Atlanta, GA 15 hall meetings. 7 72.6 Las Vegas, NV 10 8 71.4 Houston, TX 7 Consistent with responses in the individual cities, 9 70.1 Chicago, IL 3 participants were most satisfied with the organization 10 67.6 Los Angeles, CA 9 of the town hall meetings. Generally, they found the 11 63.8 New York, NY 8 registration process to be organized (4.47) and the 12 65.6 San Francisco, CA 1 locations to be accessible (4.41) and comfortable (4.42). 13 63.5 Fort Lauderdale, FL 6 Town hall participants were least satisfied with 14 63.4 Seattle, WA 12 15 56.9 San Juan, PR 15
54 a low rating to the moderator and Fort Lauderdale was TABLE 5: Means by Question the only city to give low rating to the organization of the registration process. Response Question Mean A common theme in the recommendations for The location of the town hall meeting improvement was better marketing of the event. was comfortable. 4.42 Participants in many cities indicated that too few people The location of the town hall meeting were aware of the event. Fort Lauderdale town hall was accessible. 4.41 participants commented that the meeting had been I would recommend future town hall re-scheduled several times and there was no clear meetings to friends and colleagues. 4.30 confirmation that the meeting was actually going to occur on the day that it did. Participants in New York and Fort The panelists’ presentations provided me Lauderdale suggested that the location of the meeting with new information 4.28 was such that the meeting only appealed to a segment of I am now motivated to attend AIDS 2012 the population in their cities. in July in Washington DC. 4.25 The moderator kept the discussion moving Participants in the District of Columbia and Los Angeles and on target. 4.24 gave the highest ratings to motivation to attend AIDS The meeting was organized. 4.24 2012 (4.9 and 4.88 respectively). Denver and San Francisco gave this item the lowest rating (3.89 and 3.95). The local panelists’ presentations helped me to understand the role of community Table 4 illustrates the proportion of respondents who rated members in the implementation of the meeting components 4 (agree) and 5 (strongly agree). National HIV/ AIDS Strategy. 4.14 The time allotted to speakers was Table 5 illustrates the average level of agreement for the right amount of time. 4.13 each questionnaire item, arranged from highest to lowest. The registration process was organized. 4.13 Town hall participants had enough TABLE 4: Meeting Component Rankings opportunities to share ideas about carrying out the National HIV/ AIDS strategy. 4.07 Ranking Town hall participants had enough 5 4 Strongly 4 & 5 opportunities to share concerns about carrying Meeting Component Agree Agree Combined out the National HIV/AIDS Strategy. 4.07 I now have a better understanding of Understanding of NHAS 43% 29% 36% the National HIV/AIDS strategy. 3.98 Panel presentations 36% 43% 39% The time allotted to community dialogue Impact of health was the right amount of time. 3.97 care reform 42% 27% 34% I now have a better understanding of Organization 39% 48% 43% how Health Reform impacts people living Location 41% 52% 46% with HIV/AIDS. 3.90 Time and opportunity to share ideas and concerns 36% 41% 38% I now have a better understanding of how Recommend meeting health care reform will impact local to others 31% 51% 41% HIV/AIDS programs. 3.82 Motivated to attend I now have a better understanding of how AIDS 2012 28% 49% 38% the NHAS is being implemented in this area. 3.70
55 post-event evaluations (Continued)
Highlights and Recommendations TABLE 6: Qualitative Responses The highlights of the town hall meetings were gaining information about NHAS, health care reform, and what What were your greatest take-aways from the town was going on in their cities. Town hall participants hall meeting? indicated that the information shared during the NHAS puts emphasis on most at-risk for HIV infections meetings suggested the need for individuals and that is backed by data communities to take action. Actions mentioned included Data driven prioritization of limited resources voting and sharing information. Community members The National HIV/AIDS Strategy. Know it, pass it on to were pleased with the panel members and the expertise others, and give it legs. Small groups need to network and represented by panel members. They appreciated that eventually merge. (Don’t really like mergers and acquisi- when appropriate, the proceedings were translated; tions but it appears to be what has to happen) however, there was a request for proceedings to be A better understanding of what NHAS is and the impor- translated in additional languages. Town hall participants tance to get involved appreciated the opportunity to network with other organizations and network members. Some participants Developing the best design system and care to battle this were pleased to learn that they were ahead of some illness. cities in their implementation of NHAS. Many reported The President’s top priority is HIV/AIDS policy and have gaining knowledge of the affordability of AIDS 2012 and goals require to help with this illness on a national level discovering ways to participate. Here will be an International AIDS Conference Here in Louisiana, we need to test our students in school Many of the recommendations for improvements focused National HIV/AIDS strategy; resources situation (or lack on the format and reflected some of the item ratings. In of)! Federal government suggestions; general, participants suggested reducing the time allotted for the panel and increasing the time for community Understanding the HIV/AIDS Strategy goals and taking dialogue. Additionally, it was recommended that the them to the community comments of panel members be restricted to the topics Knowledge of National HIV/AIDS Strategy for discussion and less about their work. A number of Knowing about National HIV/AIDS Strategy recommendations were directed toward marketing the What the Affordable Care Act means town hall meetings. Some participants recommended Affordable Care Act with the National HIV Strategy. Act- getting local organizations more involved in promoting Out in Houston. Support our state representatives the town hall meetings and ensuring that information on the website is accurate. Though town hall participants Health care reform was highlighted in a way to explain commented on their appreciation for the diversity what the future holds of the panel, many felt it was not diverse enough — Thanks for government officials requesting input from specifically recommendations were to ensure more local community members, our future plans and benefits representation on the panel, more Hispanics/Latinos, and Enthusiasm of panelists and audience heterosexual women. One participant commented that Great meeting room and mix of panelists the panel should reflect the diversity of the nation. Guest panel! Table 6 lists respondents’ comments unedited and in their To see motivating people speak own words. The information from the different panelists about what they do and about their different jobs, positions, and organizations Nice to meet some of the federal players The wealth of knowledge and experience of panel
56 TABLE 6: Qualitative Responses (Cont.)
The greatest take away was about HIV/AIDS and getting The leadership (government, Road to 2012) does not see to know the doctors who follow through with the virus. these cities as different. We are all the same in their eyes Very impressed with panel’s knowledge of NHAS and this will not work if you (CDC, etc.) Provide Houston with the same resources and infrastructure you give cities Renewed feeling to get more involved locally like San Francisco. San Francisco has seen a decrease in San Francisco is ahead of the nation in dealing with AIDS the community viral load because their PLWHA are com- Basically, that we the people must not wait on the govern- pletely different from us and have fewer basic life needs. ment or political leaders to make changes or implement Houston will not be successful in reaching the goals of ideas. We must do things on our own. NHAS without addressing if we don’t have the funding Thank you for bringing the town hall meeting to New and resources for basic life needs: food, clothing, shelter, Orleans and transportation)! Need for local community involvement and advocacy Texas prison system may qualify for Part A Came interested to hear from community and their con- We have a long way to go. People like to talk but no real cerns, interests, desires to be engaged answers. Commitment to develop new opportunities for prevention, Individual responsibility. Community Action testing, and treatment I loved the energy and the video clips from LA Good to have so much community input and a diverse The need to focus on the minority of PLWHA or the high- audience est risk for transmission and poor outcomes Sharing/learning from the community Being able to net- Pressing health disparities that exist work with community members in order to help with HIV/ Better understanding AIDS education, etc. New facts about HIV We all must be active in this movement. We must vote and Not sure what is happening in Denver and how I can help make our senate work for us. This is a global epidemic, focusing on the highest rates being Blacks and Latinos Senator Hugo and Wife’s message Stay involved in the political system We’re doing it We must do more as a person. We must do more as a com- There is still a lot of internal stigma and pre-conceived munity. We can do more if we continue to collaboration notions within the HIV prevention community Organize! Wow! CBO business plan needs and helping them prepare - figuring out how to “count”. Really need to think way We cannot compartmentalize care. VOTE! VOTE! VOTE! outside the box on collaborations HIV/AIDS needs to be discussed as a human problem, not an African American problem Direction of HIV funding Majority of people still more worried about their particu- The road ahead will be a hard one lar population rather than the problem of HIV/AIDS for all Meetings/conferences without action is pointless people as a whole I like the idea of bringing people together to discuss issues I learned a lot in this little conference and I understand surrounded HIV/AIDS. There are a lot of work to be done in that people with HIV and AIDS need ayudar-, money to our community. We need more services for HIV positives pay for an apartment, but if the person is on drugs and and HIV negative partners. Like medical services, homeless not take his medication, that person is cut the medicine populations, mental health. Thank you for coming. and monetary help him to help people who need it most I enjoyed the videos on the several young ladies from Scope of impact of HIV/AIDS. Young males, African Ameri- Los Angeles. I also liked the information given to target can, vulnerable, especially incarcerated population. transgender and Hispanics
57 TABLE 6: Qualitative Responses (Cont.)
The department of health is not giving actual solutions Please provide suggestions for improving future Road for our community living with HIV/AIDS to AIDS 2012 Town Hall meetings. The need for this dialogue to continue Shorter meeting not on Friday Dismissing bender barriers Provide more opportunities for questions Two video clips from Brazil Allow more time for community dialogue Same conversation as usual Limit panelists comments and responses to two minutes Community resources and connections or less New contacts Restructure so that there are more dialogues, active engagement between panelists and attendees My questions and issues were dealt with seriously and answered in a comprehensive manner Choose locations that need to be highlighted Translation was available Have breaks so participants can digest information Gifts and knowledge Have information that related to daily and common com- munity The cooperation and organization of the whole set up Focus the discussion on topics of NHAS, ACA, and AIDS Everything was perfect 2012 Washington, DC 2012 Most of talk was panelists listing past work and no con- Aids 2012 hub nection to the topics Hubs presented by Megan Warren Be specific ONAP/DHHS was especially vague More info on post conference hubs Opening remarks from panelists were too long. There Information on access to conference information should be representatives from private health, hospitals, More information about AIDS 2012. I am strongly consid- and community health ering going to the international conference Keep opening remarks and introductions brief. Town hall The AIDS conference is affordable is opportunity for community members not just panelists to talk More time allowed; Maybe on a Friday versus weekday Need more time for questions and answers. I felt I re- ceived more information that could be used as a client Mini-small group modules throughout the year with on the ground information sharing, education about HIV prevention The town hall should not be about hearing from the panel but from the audience. Why do you come if not to hear from us? It would be ideal to propose more questions to the audi- ence; to widen the scope of information collected at com- munity forum Limit panelists’ time. Ask audience for input Options for people not attending the meeting but are interested in the presentations
58 TABLE 6: Qualitative Responses (Cont.)
Focus on what health care reform will mean Representation from the entertainment and media sector. Include evidence based complementary or integrative Panelists that have more of a local connection in addition health care to the national folks. Health department was present but Consider when there is no evidence because research is not connecting any dots. not funded Please continue to provide more perspectives and rep- Not enough about actual strategies for implementation resentation. There was no Latino/Mexican-American on (Why was nothing about legal rights and how this impacts panel. Bring in Asian and other populations. Be as diverse HIV/AIDS mentioned? Want to see more mention of how as our nation is! this is planned for). Not enough re IAC and how this re- More diverse panel lates to National Strategy More focused presentation What’s the goal of these meetings? It would be helpful to More neutral venue - outside of ASO may bring in a more know this. diverse audience Try having a meeting where the word “challenge” is never More LGBT representation on the pan. More sex worker used. It sounds like an excuse – talk about what you will industry on the panel do to solve a real problem. The San Francisco Planning council should have been Hoping to hear more about opportunities for community represented on the panel and health department collaboration and planning a suc- More publicity cessful conference Keep doing what you doing but start town hall meeting in I thought the discussion would be more about the actual poor community. Because a lot of time they do not have changes of the new Health Care on HIV/AIDS Health care! the funds or resources to attend events out of their com- Need to stop dividing between White, Black, Latino, wom- munities. Contact Black church leaders or print the infor- en, youth. HIV is a broad spectrum that affects all ages, mation and hand-out the information. Remember we have races, and ethnicities. Let’s work together in all areas as a lot of people that can’t read. Don’t associate it with HIV/ ONE or we will never get anywhere AIDS but give it a title that will bring people out! More participation from HIV providers, clients, family Better and accurate promotion of the event in community. members, and everyone Local flyer gave a start time one hour too early. It was Include Asian and Latino and heterosexual Black women – very disrespectful not to have a local person speak. any heterosexual woman and youth Greater organization up to the meeting. The meeting Involve more people through dialogue with local media itself was organized well but up to the meeting there outlets. Integrate the location at other, more readily ac- was data changes, etc. Which could confuse others. I, cessible community sites. Work to engage more safety net personally was unaware if it was actually occurring today providers in the process. until I came. I also had to find out about the original date Involve more CBOS in discussions and prevention. Get the change via a friend, not from Road to AIDS 2012 itself CBOS that actually “do work” the funds to continue to The word needs to be better spread. Everyone I talked to educate and prevent and provide care for newly infected did not know about the event. people. Get into the community’s where help is necessary This is my first time hearing of AIDS 2012. We need to and needed! continue to have these town hall meeting. Please get the Representation from the religious sector. Hiv/aids activ- message out to the community. ism must hit prime time media, unfiltered. Representa- Where were the popla and lack of marketing? Lack of tion from the education sector: schools and universities. clear idea on what this meeting was designed to provide. Business, economic, labor participation in the discussion. Have the meetings posted in the local newspapers
59 TABLE 6: Qualitative Responses (Cont.)
Get the time right on the website. Better social media outreach More communication “before” any national convening in Los Angeles. Very disappointed in low turnout There needs to be more publicity. This town hall meeting was not marketed well through the channels Reach out to community workers in local cities to spread the information and get people to the table More invitations. Letting more people know about the town hall meeting. Have information in other languages Interpreters should be available for all conversations; or at all times for the English visitors. Thank you so very much! Please keep helping Puerto Rico (government, agencies, etc.) Upgrade, educate and inform the munici- palities on all issues concerning the infection/prevention HOV! Also treatments More gifts and knowledge A town hall meeting is needed in the Pacific Islands and/ or other US territories Little disappointed due to the lack of attendees in Hou- ston. Improve audio “time” beginning of program, announce- ment, etc. Full day and more/all of them videos How information technology can be integrated across organizations to allow better care, case management, and data reporting It would have been nice if more community organizations/ groups/service providers in attendance More participation from the communities Fundraise It was very engaging and interactive. Survey was really long - might have shortened. Had to think of ways to an- swer all questions. Thank you for coming to Dallas! Take information from tonight and incorporate into next one. Great! Well done. Incorporate group activity; possible break into groups, give a topic to strategize around and have group discus- sion within larger group
60 Lessons learned
The nine-month ROAD TO AIDS 2012 tour provided Many town hall participants said they felt excluded from a backdrop for plenty of lessons for the federal conversations about healthcare and welcomed the chance government, local health departments, community based to provide input at the town hall meetings. “The San organizations, private industry, general community and Juan Town Hall gave people the opportunity to speak people living with HIV/AIDS. on their concerns and to let Washington know what is happening here,” said Rosaura López Fontánez, Executive “One of the biggest things the tour showed is that people Director of Community Network for Clinical Research on really want answers from government and they want AIDS, in San Juan. answers from community,” said A. Toni Young, Executive Director of Community Education Group (CEG). From While it was important to find out what people in city to city, people demanded more communication communities across the United States are talking about and support from government, local organizations and when it comes to HIV and healthcare, it was equally healthcare providers. However, the town hall brought important to find out what they are not talking about. different segments of the HIV/AIDS community together, “The town halls showed that the level of knowledge and and different groups showed a willingness to work informed decision-making that’s going on in some local together and build on the foundation created by ROAD TO communities is low,” said Phill Wilson, President and AIDS 2012. For example, San Juan community members Chief Executive Officer of the Black AIDS Institute (BAI) welcomed the opportunity to meet with the local health and Member of the Presidential Advisory Council on HIV/ department after the town hall to further discuss AIDS. “We need to develop many more mechanisms and their concerns. Likewise, in Las Vegas, youth who had systems to provide ways for folks in local communities complained during the town hall about being excluded to be informed about national policies and national from community planning group discussions agreed to trends.” ROAD TO AIDS 2012 provided an opportunity for join the group to ensure that more collaboration would communities to get more information about the National take place in the future. HIV/AIDS Strategy and the Affordable Care Act and a Town hall participants and stakeholders also found value better understanding of how those landmark policies in having a national conversation. “We’re all a part of so impact them. many different organizations or coalitions with specific goals and objectives,” said Dena Gray, HIV Prevention While the town halls focused on HIV/AIDS, participants Program Manager for the Houston Department of Health showed that they were interested in matters pertaining and Human Services. “I think ROAD TO AIDS 2012 was to general healthcare overall. “We found that people are really instrumental in collecting all of these different more willing to participate in achieving health-related agendas and different issues and putting them in one outcomes if they understand them. Many people don’t place where we can all take a look at it and see how the feel they have opportunities to work collaboratively to goals and the objectives can be accomplished collectively achieve a health goal,” said CEG’s Young. and collaboratively. “ Another benefit of the RTA 2012 tour was its ability to mobilize communities to attend AIDS 2012 and ensure
61 lessons learned (Continued)
that their local regions benefited from the information that would be shared at the Conference, said Dorothy Mann, Former Executive Director of the Family Planning Council of Southeastern Pennsylvania and longtime Philadelphia Community Activist. “The Philadelphia Town Hall motivated people to attend the conference, and discuss creating hubs and using all the opportunities the conference will provide,” she said.
Perhaps one of the greatest lessons of the tour was the importance of having more conversations -- not just in Washington, but in the cities, towns and neighborhoods across the country. “There is a hunger in the community to be connected,” said BAI’s Wilson.
62
About the Organizers, Sponsor & AIDS 2012
Urban Coalition for Community Education The Merck Company The International AIDS HIV/AIDS Prevention Group (CEG) seeks to stop the Foundation is a U.S.-based, Conference is the largest Services (UCHAPS) is a spread of HIV and eliminate health private charitable foundation. gathering of professionals working partnership of community disparities in neighborhoods Established in 1957 by Merck, in the field of HIV, including members and health department by training community health a global healthcare leader, the people living with HIV and other representatives from urban workers, educating and testing Foundation is funded entirely leaders in the HIV response. The jurisdictions most heavily the hard to reach and sharing our by the company and is Merck’s XIX International AIDS Conference impacted by HIV/AIDS. UCHAPS expertise with other organizations chief source of funding support (AIDS 2012) will be held July 22-27, member jurisdictions are often at through national networks and to qualified non-profit, charitable 2011, in Washington, DC. the forefront of piloting new HIV local capacity building efforts. organizations. Since its inception, intervention strategies and the The Merck Company Foundation organization continually explores has contributed more than $600 ways to improve the delivery of million to support important services and uses a peer technical initiatives that address societal assistance model to exchange needs and are consistent with expertise, strategies and solutions Merck’s overall mission to help the to common challenges. world be well.
For further information: Road to AIDS 2012 XIX International AIDS National HIV/AIDS Affordable Care Act roadtoaids2012.org Conference Strategy www.healthcare.gov/law/ aids2012.org www.aids.gov/federal-resources/ introduction policies/national-hiv-aids-strategy/
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