Title of Report

We can use it if it’s made for us: Kenyan Sex workers perspectives and Voices on Microbicides and PrEP

“As a sex worker I fully embrace PrEP and microbicides as I see this as tools that will empower us …. For a long time we have been a forgotten lot but [is time to hear us if these interventions are to work.]” (Sex worker, 2011 Consultation 3)

EXECUTIVE SUMMARY

Despite existence of different HIV prevention strategies such as use of both male and female condoms, HIV treatment for HIV positives, safe voluntary male circumcision, prevention of mother to child transmission - new infections continue to occur among Kenyan sex workers. Yet, recent groundbreaking research around ARVs for prevention such as microbicides and ARV tablets for HIV prevention (Pre-exposure prophylaxis) give hope that new tools could be added to the prevention toolkit for women - including sex workers - in the future.

This report describes the outcomes of a project aimed to gather perceptions, concerns and questions from sex workers and bar hostesses in Kenya on what access to microbicides and PrEP in the future would look like to them. Often, disenfranchised women such as sex workers and bar hostess are not considered in developing research and advocacy agendas yet their perspectives are important because they will be the end users of these products.

For example, in the Partners PrEP trial conducted in Kenya and Uganda to among 4,758 HIV discordant couples - that is, where one partner has HIV and the other does not have HIV. The HIV uninfected partner took the anti-HIV medication daily to determine whether having this medication in the bloodstream would prevent him/her from getting HIV. This study demonstrated that individuals at high risk for HIV infection who took the anti-HIV medication before sexual exposure experienced significantly fewer HIV infections (up to 75%) than those who did not take the pill. (ICRC, 2011) Another study, CAPRISA 004 (Adbdool Karim, 2010) 1 | P a g e K e n y a n S e x W o r k e r s P e r s p e c t i v e s a n d V o i c e s o n M i c r o b i c i d e s a n d P r E P , 2 0 1 1 conducted in South Africa, with 1% tenefovior gel showed that when the gel was used vaginally up to 12 hours before and up to 12 hours after sex, HIV transmission was reduced by 39%. This trial recently provided proof of concept that a vaginal gel can reduce women’s risk of acquiring HIV during vaginal sex (AVAC, 2011).

The report provides the background and methodology of the project and discussion of emerging issues and recommendations from different sex worker consultations. It aims to contribute feedback to help guide policy development on further research, development and rollout plans and to engage service providers, researchers and advocates around key concerns to this population. We intend the report to be a tool that can be used by advocates to ensure that the voices of these women are heard in ongoing research and in policy development.

Section I: Background

Despite existence of different HIV prevention strategies such as use of both male and female condoms, HIV treatment for HIV positives, safe voluntary male circumcision, prevention of mother to child transmission - new infections continue to occur among Kenyan sex workers.

According to the new UNAIDS report 2011, more people than ever ere living with HIV, largely due to greater access to treatment. At the end of 2010, an estimated 34 million people were living with HIV worldwide, up 17% from 2001.This reflects the continued large numbers of new infections and a significant expansion of access to antiretroviral therapy, which has helped reduce AIDS –related deaths, especially in more recent years according to UNAIDS Worlds Aids Day Report -2011i

The HIV prevalence among Kenyan female sex workers stands at 14.1%, more than double the national prevalence in the general population at 6.3% , sex workers have been recognized by the Kenyan government as one of the most at risk populations (MARPs) in the according to Kenya National Aids Strategic Plan 2009/10-2012/13ii.

2 | P a g e K e n y a n S e x W o r k e r s P e r s p e c t i v e s a n d V o i c e s o n M i c r o b i c i d e s a n d P r E P , 2 0 1 1 Introduction of new HIV prevention strategies can help to ensure that different populations and individuals, including sex workers, have options that most appeal to them. Pre-exposure prophylaxis (PrEP) and microbicides are two such options. PrEP is an approach that uses antiretroviral medications (ARVs) to reduce the risk of HIV infection in HIV-negative people, while microbicides are substances that are being studied that could be used in the vagina and/or rectum to reduce the risk of HIV transmission during sex.

For example, in the Partners PrEP trial conducted in Kenya and Uganda to among 4,758 HIV discordant couples - that is, where one partner has HIV and the other does not have HIV. The HIV uninfected partner took the anti-HIV medication daily to determine whether having this medication in the bloodstream would prevent him/her from getting HIV. This study demonstrated that individuals at high risk for HIV infection who took the anti-HIV medication before sexual exposure experienced significantly fewer HIV infections (up to 75%) than those who did not take the pill. (ICRC, 2011) Another study, CAPRISA 004 (Adbdool Karim, 2010) conducted in South Africa, with 1% tenefovior gel showed that when the gel was used vaginally up to 12 hours before and up to 12 hours after sex, HIV transmission was reduced by 39%. This trial recently provided proof of concept that a vaginal gel can reduce women’s risk of acquiring HIV during vaginal sex (AVAC, 2011).

This report is a summary of work from engagement with sex workers from select regions across Kenya in 2011 in order to document their voices on what access to PrEP and microbicides would mean to them. The document will be used as an advocacy tool to inform researchers and policy makers on what access to PrEP and microbicides will mean to sex-workers, and advocate that their voices and concerns are considered as guidelines are developed for their introduction in Kenya. It will also be used as a reference tool for sex workers who are trained as peer educators around prevention research.

This work is part of the AVAC Advocacy Fellowship project hosted by Bar Hostess Empowerment and Support Programme (BHESP) in Kenya through a partnership with AVAC: Global Advocacy for HIV prevention (AVAC). 3 | P a g e K e n y a n S e x W o r k e r s P e r s p e c t i v e s a n d V o i c e s o n M i c r o b i c i d e s a n d P r E P , 2 0 1 1 Section II: Methodology

Seven consultative meetings with 210 sex workers from different regions including Kasarani, Thika, Kibwezi, Mwingi, Machakos, Kisumu and Busia were held from March through September 2011. An attempt was made to represent the different categories of sex workers including home-based, street-based, bar-based and strippers from clubs. At least 30 sex workers were engaged at every meeting. The participants from the various regions were selected by their group peer leaders from existing groups previously linked with BHESP.

Consultative meeting Kisumu

Pre-test and post-test questionnaires were administered to assess participants’ knowledge on PrEP and microbicides. An introductory session on PrEP and microbicides was usually conducted or facilitated by a resource person from a trial site or a key partner from an organization involved in research or research advocacy. Participatory approaches were used to ensure optimum interaction and feedback in the dialogue sessions. Sex workers’ perspectives,

4 | P a g e K e n y a n S e x W o r k e r s P e r s p e c t i v e s a n d V o i c e s o n M i c r o b i c i d e s a n d P r E P , 2 0 1 1 questions and concerns were collected during the participatory discussions throughout the seven consultative meetings.

Two individuals were also identified from each group to participate in a peer educators’ training workshop in September 2011. The peer educators were trained to better understand and use existing and new materials on PrEP and microbicides, so that they could continue to support their groups in learning about and considering implications of introducing new HIV prevention options.

5 | P a g e K e n y a n S e x W o r k e r s P e r s p e c t i v e s a n d V o i c e s o n M i c r o b i c i d e s a n d P r E P , 2 0 1 1 Section III: Key emerging issues and questions

Several issues and questions emerged, largely consistent throughout the seven consultations. Most issues were to do with the research process and conduct, the experimental products, future product access, safety of possible products, adherence to the interventions, benefits and cost of using them, and involvement of sex workers and other populations in the research and development of the products.

This section will summarize the major questions and issues that emerged from the consultations. The most frequent questions and issues that arose are interesting to note here as they show a range of concerns from effectiveness, to long term safety, to different usage and even population-level impact. Some of these recurring questions include:

 Will PrEP and microbicides be as effective as condoms?  What are the side effects of lack of adherence for PrEP and microbicides?  How safe is it for people using PrEP and microbicides in the long-term?  Are microbicides safe and effective for rectal use?  Will adherence to the drugs be able to maintain over the long term or will use fizzle out?

Product-Related Issues

How will they benefit us?

“As a sex worker am happy about these new products because if am raped I will be at a lower risk of getting HIV” (Sex worker, 2011 Consultation 1,2&3)

During the consultations, it emerged that most sex workers believed that if a product that has been researched is released on the market, then it must be beneficial to them. To most, this would be a welcome HIV prevention alternative to condoms for use with their boyfriends and/or clients who insist on sex without condoms.

It was important to note in the dialogue sessions that PrEP and microbicides, once/if available on the market, will be partially effective and will not replace condoms or any other intervention - rather they will complement them. Recognizing their increased risk to HIV acquisition, many

6 | P a g e K e n y a n S e x W o r k e r s P e r s p e c t i v e s a n d V o i c e s o n M i c r o b i c i d e s a n d P r E P , 2 0 1 1 meeting participants noted that even with partial effectiveness of microbicides and PrEP - if the products were availed on the market - they would still use them. There were some fears expressed around the risk of increasing infection with sex workers viewing the products as a replacement for condoms and hence not using other prevention efforts.

Several sex workers commented that both effective PrEP and microbicides would be “more friendly” options for women, especially for those with regular partners, who choose not to use condoms. Also, they are aware that microbicides (in gel form) may reduce dry sex and the likelihood of condoms bursting, and this was a big motivation for them to consider using future microbicides, if ever available. They also noted that these products could be particularly useful in cases of rape or condom bursting during sex – both daunting realities that they often face in their daily work.

Many sex workers were, however, concerned overall about the benefits of PrEP and microbicides in comparison to other available interventions. Would the benefits of possible future prevention products outweigh the risks they possibly posed?

Will they use them? “What are the side effects of lack of adherence for PrEP and microbicides?” (Sex worker, 2011 Consultation 1)

Many of the sex workers participating in the meetings were concerned about adherence to future PrEP and microbicides. They wanted to know whether not using the microbicides and PrEP as required would affect the products’ protection effect on HIV acquisition. They wanted to know if intermittent (not using daily) PrEP dosing were available that would allow them to take PrEP less frequently. Generally, their preference is for a monthly or weekly dose as opposed to daily dosing, as they said this would make it easier for them to adhere to.

Will adherence be feasible? Most sex workers frankly narrated that it was hard finish a dose of any drugs they were prescribed. They felt they needed a drug that is taken at least weekly or monthly.

7 | P a g e K e n y a n S e x W o r k e r s P e r s p e c t i v e s a n d V o i c e s o n M i c r o b i c i d e s a n d P r E P , 2 0 1 1 Will they be safe? “Can you use PrEP and PEP the same time?” (Sex worker, 2011 Consultation 3)

Several sex workers at the consultations were concerned about the safety of PrEP and microbicides. For example, they wanted to know if using PrEP and microbicides on a regular basis wouldn’t expose them to unnecessary side effects of ARVs.

There was also a concern of how PrEP would interact with other drugs such as ARVs used for post exposure prophylaxis (PEP) and drugs used for STIs and other common infections. Some sex workers acknowledged using PEP after being raped or having sex with a client who refuses to use a condom.

Most of the sex workers also wanted to know the effect of taking PrEP and microbicides with alcohol as they note that is an expected part of their work.

“I can`t miss work for two days and I have to take a drink before I start working to give me valor. Will alcohol interact with microbicides and PrEP?”

Sex workers were concerned over the long term effect of using PrEP and microbicides. Although they were willing to use the products, it was clear that they wanted to know what long-term use of these products would have on them.

There were also questions regarding the safety and effectiveness of PrEP and microbicides for rectal use. They noted that some clients opt for anal sex and they were concerned how new prevention options would help in those situations. There is research on rectal microbicides which will answer questions on using rectal microbicides but recently it’s not safe to use.

How can we ensure we can get them? “PrEP and microbicides will be very important to us sex workers but we need this products to be availed at us at the sex worker friendly clinics and sex worker advocacy organizations” (Sex worker, 2011 Consultations 1, 2, 3, 5)

Sex workers cited the non-availability of female condoms in most places as a lesson for those intend on introducing PrEP or microbicides as new products for women to use. As we have seen 8 | P a g e K e n y a n S e x W o r k e r s P e r s p e c t i v e s a n d V o i c e s o n M i c r o b i c i d e s a n d P r E P , 2 0 1 1 with the female condom, introduction of a tool without the proper programming to encourage its uptake and correct use is wasteful and counter-productive. Many recommended that the PrEP and microbicides, once available, should be availed in all hospitals, clinics, and sex worker advocacy organizations for ease of accessibility. The products should be offered as part of the comprehensive package during voluntary counseling and testing.

How much will it cost? “How affordable will be the products?” (Sex worker, 2011 Consultation 1, 2, 3, 4, 5, 6)

Products are developed to be used and cost is a key factor to ensuring that access and use. Most sex workers attending the consultations were concerned about the eventual cost of PrEP and microbicides. Most sex workers wanted to access PrEP and microbicides free of charge or with subsidies from government. The average amount that most sex workers were willing to pay for PrEP or microbicides is about $0.50 (50 Kenya shillings) daily.

Currently, male condoms cost $0.30 (30 Kenya Shillings) while a female condom cost $2.00 (200 Kenya Shillings).

Why aren’t we involved in the research? “Nothing for us without us” (Sex worker, 2011 Consultation 5) Many sex workers were concerned that researchers do not involve them in the research process right from the onset - yet these products are developed for them (the sex workers) as well as other populations of women. They want to be consulted and represented, and not just involved in the research process solely as research subjects or participants.

We can be powerful advocates for new prevention tools

9 | P a g e K e n y a n S e x W o r k e r s P e r s p e c t i v e s a n d V o i c e s o n M i c r o b i c i d e s a n d P r E P , 2 0 1 1 Articulate sex workers at many of the consultations noted that because PrEP and microbicides are being designed to be friendly to women and more so to sex workers – that as soon as they are available on the market, sex workers will become vocal champions of promoting the two products. They will advocate among their peers, communities, community leaders, media and to policymakers.

Marketing and messaging – what works?

Many of the sex workers in the consultations are not literate. However, it emerged from our discussions that even those who can read, rarely read the labels on condom packets. They are more concerned with the brand (for example, they pay attention to the condom ‘types’ or brands that burst easily) and how to put on the condom correctly. Many do not even bother to check the expiry date.

Recommendations they gave on this included the following: if/when new prevention options become available on the market, they must be labeled to communicate essential messages to the user about the product’s partial effectiveness, contraceptive versus non-contraceptive properties, duration of protection and potential consequences of oral or anal use. Sex workers will also need very specific information on the frequency with which a product can be used safely and the potential impact of very frequent sex acts (several times daily) in the presence of the product. This information may need to be communicated to sex workers in other ways, besides being on the labels. Advertisements through media, peer education and brochures/ teachings through sex worker organizing groups were some of methods suggested. These should also be included in the HIV prevention comprehensive package for sex workers.

Of great concern to sex workers was the issue of counterfeit products being released to the market as effective microbicides. They had no answer on how to counter this but requested the researchers, policy makers and sponsors of the product to address the issue and keep it mind when marketing strategies are being developed.

10 | P a g e K e n y a n S e x W o r k e r s P e r s p e c t i v e s a n d V o i c e s o n M i c r o b i c i d e s a n d P r E P , 2 0 1 1 Role play during peer education training

11 | P a g e K e n y a n S e x W o r k e r s P e r s p e c t i v e s a n d V o i c e s o n M i c r o b i c i d e s a n d P r E P , 2 0 1 1 Section IV: Recommendations

The issues, concerns and questions from the sex worker consultations demonstrate both their interest in microbicides and PrEP as possible HIV interventions and their understanding of the way they could/not work and how it could affect access. It is critical that there their questions and concerns are reflected upon at the several levels that future research, development, rollout, advocacy and access this is being discussed. Below are recommendations to civil society groups, researchers, policy-makers and for sex workers themselves for how these concerns should be considered and acted upon.

For civil society groups:

Civil society groups working with sex workers must strive to continuously build the capacity for sex workers to ensure that they (the sex workers) understand PrEP, microbicides and other new prevention options being researched; have an opportunity to consider their benefits and risks and their use; and to ensure their voices are amplified in platforms where future access to these products are being considered.

These groups can also identify and train champions within the sex worker communities who could help promote PrEP and microbicides, once/if they are made available.

They should also network with sex worker advocacy organizations to address issues related to PrEP and microbicides to ensure ownership of these campaigns.

Civil society must also engage the sex workers who are trained peer educators around PrEP and microbicides to involve them in community engagement, and in advocacy campaigns.

For researchers in prevention research:

Research teams should consult with sex workers for their input to planned research among them right from the onset for they (the sex workers) are some of the end users of these products. Once consulted, researchers should seriously consider sex workers’ ideas and 12 | P a g e K e n y a n S e x W o r k e r s P e r s p e c t i v e s a n d V o i c e s o n M i c r o b i c i d e s a n d P r E P , 2 0 1 1 concerns. Failure to meaningfully and regularly engage and involve them will ultimately affect product access.

They want to be consulted and represented, and not just involved in the research process solely as research subjects or participants.

In communicating with sex workers, researchers should use simple language that they can understand as opposed to their scientific jargon that does not mean much to the sex workers and their constituents.

Researchers must ensure that once roll-out takes place, they document long term side effects of PrEP and microbicides as this is a big concern for the sex workers. They should also ensure that there is documentation of the effects of the interaction between PrEP/microbicides and alcohol, and that of PrEP/microbicides and other drugs such as PEP, family planning interventions and others. Also, questions regarding anal sex show that this population should also be updated on rectal microbicide research.

For policy makers and government bodies:

Ensure that the Kenya national budget meets the 2001 Abuja African Union Declaration by committing at least 15% of this budget to health, and within this, to specifically ensure that enough resources are dedicated to HIV prevention, care and treatment.

Government must start working towards considering how it could possibly include PrEP and microbicides in the HIV prevention comprehensive package for sex workers, once more data is available and if/when they have been proven to be safe and effective.

Enact laws/guidelines that will enable the smooth roll out of PrEP and microbicides once they are available.

Require that, prior to widespread public roll-out of a product, a targeted product education plan is developed that is capable of reaching sex workers, their clients, and other high-risk consumers with the same information that appears on the product label. This can be done, in consultation with sex worker advocacy organizations, through sustained message distribution 13 | P a g e K e n y a n S e x W o r k e r s P e r s p e c t i v e s a n d V o i c e s o n M i c r o b i c i d e s a n d P r E P , 2 0 1 1 strategies to reach the target populations systematically and over time, ensuring that they have the information they need for informed use.

The ministry of health and its allies must ensure that as further research is conducted to confirm the effectiveness of PrEP and microbicides, clear communication strategies for these interventions for different populations and groups are developed. These will ensure a systematic and smooth roll out of the interventions once they are available.

Government must ensure that once available, PrEP and microbicides are available in sex worker-friendly clinics.

Government and partners should involve sex workers in planning, implementation, monitoring as well as development of guidelines and policies and education materials for sex workers.

For sex workers:

Sex workers should continue seeing themselves as important players in the research and development process and should avail themselves to participate at the different levels – as sources of important information on protocol development, community representatives, peer leaders, research participants, observers, and to provide genuine feedback to the research process.

Sex workers should also ensure that - if effective and safe and made available - they use PrEP and microbicides correctly and consistently and should see them as products that complement, rather than replace, existing proven prevention tools that are already available.

Section V: Conclusions 14 | P a g e K e n y a n S e x W o r k e r s P e r s p e c t i v e s a n d V o i c e s o n M i c r o b i c i d e s a n d P r E P , 2 0 1 1 Deliberately and closely engaging high risk populations such as sex workers offers much in terms of understanding their needs, challenges and opportunities to introduce new HIV prevention interventions such as PrEP and microbicides.

From these seven meetings involving more than 210 sex workers from different regions in Kenya, it was evident that most of the sex workers are exited about the idea of the introduction of a woman-controlled HIV prevention intervention. It’s clear that they will embrace PrEP and microbicides, once they are available, since these would provide them an addition weapon to the already existing pool of HIV prevention strategies to choose from.

Their questions and concerns are similar to what we hear from women in other countries and what research teams themselves are considering. It demonstrates that it is easy to inform and work with sex-workers so they are able to contribute to the dialogue and to setting the agenda for access and rollout.

It was also clear that there is much that Kenya has to do to prepare for the introduction of PrEP and microbicides. In addition to the need to secure additional funds that will ensure availability of the products, systems have to be put in place to ensure that the end-users access them - for example, ensuring that sex worker-friendly clinics are nurtured and seen as distribution points. While there are a few places where sex workers can comfortably access PrEP and microbicides, much has to be done to ensure that more service centers are available.

Clear communications strategies will also have to be developed ahead of possible roll out to ensure maximum benefits from PrEP and microbicides. One of the key aspects of such strategies is the issue of the complementarity of PrEP and microbicides to the already existing interventions.

In the end, the hope of these exciting new intervention and products will be of no use if they are not used, and it is our responsibility to ensure that sex workers are seen as important voices in considering how to ensure access to them.

15 | P a g e K e n y a n S e x W o r k e r s P e r s p e c t i v e s a n d V o i c e s o n M i c r o b i c i d e s a n d P r E P , 2 0 1 1 Quotes from Sex workers

A participant in Kisumu said” this intervention is the best we support microbicides and PrEP”.

What percentage will be the final microbicide product in the market?

As a sex worker I see most of us not adhering to drugs because most of us are disciplined and take up what is near or what is affordable at the time.

We will use condoms more because the rate of effectiveness will be high combining the percentage of the product and a condom.

More information to other sex workers to know the importance of these products and also we need government support.

“As a sex worker I fully embrace PrEP and microbicides as I see this as tools that will empower us as a sex worker. For a long time we have been a forgotten lot but I see a challenge on how feasible it is in our country. With the drug stock outs in our country and how supportive is our government.”

References  AVAC. AVAC. 09 20, 2011. http://www.avac.org/ht/d/sp/i/326/pid/326 (accessed 09 20, 2011).

16 | P a g e K e n y a n S e x W o r k e r s P e r s p e c t i v e s a n d V o i c e s o n M i c r o b i c i d e s a n d P r E P , 2 0 1 1  AVAC. 09 21, 2011. http://www.avac.org/ht/d/sp/i/326/pid/326 (accessed 09 21, 2011).

 JC2216_WorldAIDSday_report_2011_en.pdf

 Adbdool Karim, Q. (2010). Effectiveness and safety of Tenofovir Gel, an antiretroviral microbicide for prevention of HIV Infection in women. Science, 1168-1174.

 ICRC, UW (2011, 12 12). Partners PrEP Study. Retrieved 12 12, 2011, from ICRC University of Washington: http://depts.washington.edu/uwicrc/research/studies/PrEP.html

 UNAIDS. (2011). UNAIDS World AIDS Day Report 2011. Geneva: UNAIDS.

17 | P a g e K e n y a n S e x W o r k e r s P e r s p e c t i v e s a n d V o i c e s o n M i c r o b i c i d e s a n d P r E P , 2 0 1 1 i UNAIDS World Aids Day Report-2011. ii Kenya National Aids Strategic Plan 2009/10-2012/13.