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25 Years of Delivering

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25 Years of Delivering 25 years of delivering by supporting patient journeys 2020 ANNUAL IMPACT REPORT 1 2020 ANNUAL IMPACT REPORT LETTER FROM THE CEO Welcome CONTENTS Letter from the CEO 3 Patient Advocate Foundation (PAF) has provided people who make us what we are – the patients and direct assistance over the past 25 years to more than caregivers we serve along with our dedicated staff Overall Foundation Impact 4 1.5 million seriously ill patients who are in a moment and partners who roll up their sleeves to help. of crisis. As our nation is poised to emerge from the You will also see our values, which have long COVID-19 Response 6 COVID-19 crisis, I can say proudly that we at PAF been grounded in a belief that each member of are undaunted in our commitment to addressing the the community should have equal opportunity to How We Help unique needs of vulnerable patients and families achieve good health. This core principle is reflected struggling to access quality healthcare services Case Management 8 in the practical problems we address and the specific and overcome the financial ravages of illness. Financial Services 9 populations we serve through case management, The communities we serve have long endured unequal financial assistance, education and training, health Bennardo Family’s Story 10 access to care and the challenges created by the services research and community outreach. many social determinants of health. The pandemic Patient Education & Empowerment 12 PAF will continue to help one patient at a time and has drawn much-needed public awareness of these one community at a time thanks to your sustained Health Equity & Community Engagement 14 inequities while also intensifying the need for the support. On behalf of the patients and families we work we do at the individual and community level. Ricky’s Story 16 are privileged to serve, I offer my deepest gratitude Our mission has never been more motivating and to those who make our work possible and invite Service by the Numbers 18 our dedication more important to finding solutions you to continue the journey with us. Joyce’s Story 20 for patient populations facing barriers related to necessities like food, housing, transportation and Health Services, Research, 22 insurance coverage. Patient Experience & Evaluation You will see in this report the impact of our programs Alan J. Balch, PhD that brought direct relief to nearly 193,000 patients Chief Executive Officer tiny.cc/ceointroduction Special Events 24 in 2020. More importantly, you will get to know the Financial Statements 26 Supporters 29 Board of Directors 33 OUR HISTORY Scientific Advisory Committee & Honorary Board 34 PAF was founded in 1996 by Nancy Davenport-Ennis and co-founded by John H. (Jack) Ennis to help address the issues faced by patients like their friend Cheryl Grimmel, who had to battle not only her breast cancer but for access to affordable treatments. In PAF’s first year, Nancy and a part-time volunteer staff of 2 provided case management assistance to 157 patients who faced barriers to prescribed care. Fast forward to 2020, and we’ve helped a cumulative total of more than 1.5 million patients nationwide with support provided by more than 200 staff. 2 3 OVERALL FOUNDATION IMPACT OVERALL FOUNDATION IMPACT Overall Foundation Impact Service to All 50 States increased by 32% What Our Patients Are Saying… PAF served patients in all 50 states and the U.S. territories in 2020. Using county-based data, over 2019 the map below represents the locations of patients we served and provides insight into the number PAF uses a standardized survey to assess overall Summary of PAF Total Patient Cases and Contacts in 2020 and type of engagement activities in specific locations. Shading by county depicts population density patient satisfaction and program impact levels. Total Patient Case Count 192,881 of PAF patients. Chips represent a specific location for a PAF program, event or activity. The top ten Each patient directly served by the organization patient service states are outlined in white. Case Management Cases 21,161 is invited to share feedback in either English or Co-Pay Relief Recipients 71 ,115 Spanish. The overall survey completion rate Some in-person conference and event participation took place in early 2020; however, the onset of Financial Aid Fund Recipients 61,197 of 5%, results reflect high rates of satisfaction COVID-19 required a pivot to innovative, virtual participation formats. This successful transition provided PAF COVID Financial Support Recipients 23,866 across all patient programming, with patients PAF with access to larger, new, more diverse and non-traditional audiences. and their caregivers reporting that PAF was Patient Services Email Helpline Sessions 15,542 helpful, knowledgeable, compassionate and well-informed on issues of importance to them. Total Patients Served by PAF Between 1996 and 2020 1,556,713 2020 Overall Patient Satisfaction Rating DIAGNOSES SERVED BY PAF 9.7 of 10 629 246 Patient Ratings for PAF Service DISTINCT PATIENT DIAGNOSES DISTINCT RARE DISEASES 4.9 of 5 The Programs Through Which We Deliver Direct Assistance knowledge & professionalism of staff CASE MANAGEMENT 16 serve patients living with a diagnosis 98% 99% other than cancer indicated their issues would recommend 31 15 serve patients living with cancer were resolved PAF to others total unique programs and/or PAF provided 4 programs fully administered by PAF valuable help for other non-profit organizations FINANCIAL SERVICES % of Respondents That Would Recommend PAF to Others by Program PAF Population Hotspot Indicators PAF National Impact PAF Top 10 Patient Service States 59 disease funds assist with medication costs Less than 10 Research Dissemination through Conferences Florida: 12% North Carolina: 5% 20 funds provide travel assistance to patients 16 11-100 Patients Health Equity Workshops & Events Georgia: 10% Alabama: 5% patient assistance 8 funds provide cost-of-living assistance 101-500 Patients Academic Research Partners & Stakeholders Texas: 8% South Carolina: 5% programs provide to patients 95% 99% 99% 501-1,000 Patients California: 6% Ohio: 4% financial support Speaking Engagements & Event Participation 5 funds provided financial assistance > 1,001 Patients New York: 5% Illinois: 4% to patients across Case Co-Pay Financial Aid Scholarship for Survivors Awardees 92 unique funds to people impacted by COVID-19 Management Relief Funds 4 5 February 29: CDC and Washington COVID-19 Response Key State report the first US COVID-19 death2 COVID-19 RESPONSE National Response January 21: CDC confirms March 11: The World Health Organization PAF Response 1st US Coronavirus Case1 declares COVID-19 a pandemic COVID-19 Response March 30: Treasury March 27: CARES Act March 15: The CDC recommends Department announces signed into law against gatherings of 50 or more people PAF’s ongoing response to COVID-19 has been shaped by guiding principles that placed the health of our staff distribution of COVID-19 and families and the ability to continue providing high-quality service to our patients at the forefront. PAF COVID Care Resource PAF establishes key priorities to guide economic impact payments4 Center launches pandemic response planning Within days of the first state-issued stay-at-home PAF focused on the urgent, unmet needs facing April 1: PAF orders, PAF established a COVID-19 Emergency Response patients and their families that resulted from COVID-19 launches COVID Plan and implemented associated activities including: and the wide-spread restrictions designed to mitigate the Care case March 20: March 17: Puerto Rico April 28: Gallup poll finds 1 in 7 Americans spread of the virus. PAF worked with new and existing management and 96% of PAF staff issues the first territorial stay- •Development of an enterprise-wide Pandemic would not seek care for COVID symptoms partners to develop and deliver easily accessible, impactful the COVID Care transitioned to Work at-home order, followed by Response plan because of cost concerns5 direct assistance and educational initiatives for those patients Recovery Fund from Home California on March 193 and families suffering from the virus and its impacts. PAF data analysis reveals an increased •Development of a Remote Desk Services plan These efforts resulted in valuable resources, including: demand for support for cost-of-living expenses. •COVID Care Resource Center PAF and •Successful transition of 96% of PAF staff May 8: patientadvocate.org/covidcare/ Team Rubicon to a work-from-home model, with no More than 5 million Americans have lost health • COVID Care Webinar Series launch COVID-19 July 14: interruptions to service availability insurance because of job losses linked to the pandemic7 • COVID Care Resource Directory Emergency Food for our patients Assistance Program •COVID Care, case management support program PAF’s Health Equity team leverages partnerships to reach 1-800-532-5274 at-risk populations with information about our COVID-19 •Development and implementation of flexible June 30: Sixteen states pause their support programs framework for PAF parents of school-aged •PAF’s Co-Pay Relief Program COVID-19 Fund reopening plans; 36 states report new children in remote learning models 6 copays.org/funds/covid-19/ cases are trending upwards PAF’s COVID-19 Pandemic Impact Survey is disseminated, garnering more than 4,100 responses •Expanded FMLA protections for our staff •COVID Care Recovery Fund (serving patients through November 5, 2020) August 10: PAF’s Co-Pay Relief COVID-19 Fund launches
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