The International AIDS Conference in Durban in July provided an important moment for further debate and discussion about the challenges and barriers undermining access to services for key populations. Key population groups themselves, as well as other activists, funders, and health care providers shared best practices and strategies on service provision, and identified priorities for advocacy going forward.
The questions we grappled with were many: As we fight for treatment and prevention for all, how can we ensure the expansion of service delivery models that combat, and not ones that reinforce, stigma and discrimination? How can we prevent community-based key populations groups from them being passed over for funding in favor of large non-governmental organizations?
Here are 6 things governments and donors can do, to put us on the path to achieving quality HIV treatment and prevention for all gay and other men who have sex, trans people, sex workers and people who use drugs:
1. End the vicious cycle of sidelining grassroots key population led organizations and starving them for funding
Many small key population-led organizations face a vicious cycle--they are not funded to do the high impact advocacy work that is vital to creating systemic change. Instead, large non-governmental organizations often receive the lions-share of funding. The funding that does go to key populations groups is often limited to outreach and HIV testing. Expanding investments in grassroots key population-led organizations for both advocacy and service-delivery is critical to increasing access to quality treatment and prevention for these populations. Some of these organizations have already shown that key population-led groups have the ability to engage in high-impact advocacy and/or to provide high-quality treatment and prevention services. Most importantly, these organizations are often trusted by the populations they work alongside and serve.
2. Engage key populations in each stage of decision-making about policies, resource allocation, and service delivery. Key populations know what they need best.
Many donor institutions and governments have identified engaging with key populations as a priority. However, too often this is ad-hoc, limited to one-off meetings in capital cities and key populations are not provided with the support that they need in order to make this meaningful. If planning processes continuously engage key populations, donors and governments will be better able to understand how their programs aren’t working, and how they might be best improved. But key populations must not only be invited to participate, they also need to be supported financially to do so. Steps should also be taken to ensure that representation is substantial and diverse. It should not be limited to lone individuals from ‘more acceptable’ mainstream organizations. More than one seat at the table is needed as different key populations groups have different needs and concerns--a representative from a sex worker group cannot be presumed to adequately represent men who have sex with me, trans people and people who inject drugs.
3. Trust key populations to reality-check and bolster data used in decision-making
Most countries lack data on key populations despite knowledge of the need to program for the populations. Countries that have collected information on key populations either have not shared the information collected or have estimates that are not reflective of the true numbers of key populations in their countries. As a result, in many countries key population targets are set too low, or not set at all. Key populations need to be relied on to reality check data when it is poor, and to bolster information for decision-making where data is lacking entirely. At the same time, donors and governments should refrain from collecting data in ways that serve to deepen stigma and marginalization. For example, the introduction of biometrics without guarantees on the safety of data collected by government could be used to harm communities.
4. Partner with key populations to identify areas with low prevalence among the general population but high prevalence among key populations.
Often, key populations may not access any HIV services, and therefore do not show up in the HIV data for the area. This is the danger of the move to geographically focused programs. The town of Lamu in Kenya is regarded a ‘low-priority county.’ However, activists and communities of people who use drugs were able to show the high numbers of people who inject drugs – people who simply did not show up in prevalence data, but were part of an unseen epidemic. PEPFAR has since prioritized Lamu for prevention and treatment services. Donors and governments must take concrete steps to go beyond general population data.
5. Fund key populations to deliver services for their communities.
While scaling up HIV treatment in a subset of high-burden geographic areas can improve program efficiency, it can come at a cost for key populations who cannot or will not access treatment at a large mainstream clinics or hospitals. When it comes to HIV testing, we have learned that that involving key populations in providing these services often works best. But often it seems we imagine that discrimination and barriers to care fall away once someone tests positive. If our goal is for all key populations to have an equal opportunity to achieve viral suppression, we need to go beyond simplistic referral systems. We need clinical services to be provided in partnership with key-population groups already providing testing. We need to fund local key population organizations to support treatment literacy and adherence. And we need to do everything we know works to ensure key populations are retained, even as we fix the problems of discrimination, long wait times, and shortages of health workers in mainstream clinics. Community-based key population groups often have the capacity to provide HIV treatment, prevention and care services in ways that best meet the needs of their constituencies.
6. Make the entire health system work better for all, including key populations
Most key populations do and will continue to receive their services in mainstream clinics. As we expand access to treatment and to pre-exposure prophylaxis we need to ensure that we have enough qualified healthcare workers at clinics to provide quality services to all who need it. There is much more to adherence than just picking pills—we need to also focus on social systems outside the hospital network. Key populations are directly affected when health systems are too stretched to accommodate scale-up. As we build key populations specific programs, we also have to keep our eyes on making the public sector work for everyone.
Health GAP is committed to advancing successful programs for key populations in our policy and advocacy work around the globe. We are working with key populations groups and networks in six high-burden countries, to ensure that donor and domestic funding for the AIDS response advances the rights of gay and other men who have sex with men, trans people, sex workers, and people who use drugs to quality, lifesaving care. Stay connected for regular updates about this and other work here.