Why PEPFAR is failing Key Populations and Black Gay Men: Using the Same Strategies and Expecting Different Results

Are we targeting the right people in the right places?    While UNAIDS estimates that 25% of new infections globally are attributable to Key Population and their partners, but the budget for these efforts is not matched.  For example, in Group two countries meeting in Johannesburg during this year’s PEPFER annual COP reviews, PEPFAR spends some $2 billion to countries for HIV/AIDS services.  Of this, about 1% is focused on Key Populations amongst which includes black gay men.

Is the budget for targeting black gays adequate?  Central commitments from PEPFAR have added little additional funds to the COP budgets that are the routine funding process to countries.  There have been limited central commitments to Key populations  in 16 years:  the Key Population Challenge Fund gave $20M in 2012 to help jumpstart KP programs; 2) the Key Population Implementation Science Fund allocated $15M for research in 2012; 3) funding of $10 in 2016 to Elton John Foundation for supporting KP violence response; and 4) the Key Population Investment Fund (KPIF) commitment of $100M in 2016 and some on-going support to global civil society groups through the Robert Carr network which includes some KP networks .  While the announcement of KPIF was welcomed globally, this is now just starting to move forward with so many twists and turns and when taken in context, is a small proportion of funding from PEPFAR to these populations.  PEPFAR funding should come routinely through the COP, not just periodic central initiatives that do not benefit all countries, for example not all countries are included in KPIF.  The largest central initiative commitment of PEPFAR has been through DREAMS – over a half-billion dollars — focused on adolescent girls and young women, although some KP programs, especially sex worker interventions, were able to benefit.  And DREAMS provided PEPFAR’s introduction of PrEP.  But when taken as a whole, PEPFAR has only allocated 1-2% of funding toward KPs overall.

Budget for Condoms, Risk Reduction, STIs, and other prevention services?   The over-budget for condom programming and any prevention services in PEPFAR (HVOP) which was traditionally the main source of funding for KPs has been squeezed within countries and has gone down significantly as the funding toward treatment has increased.    

Budget for Prevention vs. Testing vs. Treatment vs. Structural Interventions?    The vast majority of PEPFAR funding for KPs has shifted from prevention to testing and treatment over the past 3-4 years.  While additional funds for testing and treatment are welcome and critical, the budget for HVOP has been squeezed.  A lower number of cases within KPs?    When we hear about cities or countries in the US, Europe or Australia where the number of new cases of infections is coming in, we judge this as a success – thinking that the benefit from treatment and prevention is working – that was the whole strategy of Treatment as Prevention where community viral load is down as treatment goes up. Less virus in the population leads to less new infections.   But in PEPFAR, we see lower numbers of new infections coming from our testing as a failure.  Is this success or failure?

Proxy linkage rates.   PEPFAR evaluates it’s country programs’ success based on measuring the number of new infections (HTS_POS) measured against number newly on treatment (TX_NEW).   But KPs have only one indicator (KP_PREV) which is required.  Disaggregating testing and treatment among KPs are optional in PEPFAR.  PEPFAR countries are highly focused on targeting case-finding strategies to elicit new cases of HIV positive individuals on treatment and set aggressive and ambitious targets for KP partners, but treatment programs, which often are funded and run by facilities through different partners, do not track KP status among new ART initiators.  When taken as a whole, PEPFAR then takes the number of new KP infections identified and divides by the low number of people newly on ART who are categorized as KPs – where KP status is largely not coded – and erroneously judges the KP program as failing.  

Focusing on KP’s successful care.   PEPFAR used to track community support for care and retention.   This had a specific funding earmark of 20% for palliative care at the beginning of PEPFAR and a specific indicator (COMM_CARE).  HIV redefined palliative care as the critical support from diagnosis onward to a successful treatment trajectory, rather than simply pain management and support for the terminally ill.   As PEPFAR has increasingly made the focus of efforts on testing and starting the newly diagnosed on treatment – the funding and attention for those already on care were shifted and PEPFAR dropped COMM-CARE as an indicator.  But now there is recognition of the number of new initiators on ART is less than the number of those who are lost to follow up in some PEPFAR programs.  

Black gay men are stigmatized, criminalized and have the double stigma of the disproportionate burden of HIV.  When diagnosed and initiated on ART, their success is contingent on increased support for counseling and community-based support, and this area has been the most important paradigm shift for KP programs in recent years.  Yet there is no longer an indicator for PEPFAR to measure this support or dedicated budget to support KPs’ success on treatment.   Because KPs have a larger impact on future transmission dynamics, their success in treatment must be prioritized.  For example, if an HIV positive sex worker, whether female, male or transgender, who has 50 clients in a month, fails on treatment, the potential for impacting onward transmission is much higher.   This also is the case for people who inject drugs and who may share needles within their networks.  

Failure on treatment for KPs is not only costly to onward transmission of new cases, but it also is costly to countries and to PEPFAR in ways that have not been considered fully.   Due to stigma or poor quality treatment services, KPs may be more likely to fail or drop out of treatment services where they do not feel welcome or well services.  When KPs fail treatment, they will need more costly treatment, such as second or third-line drug regimens, and they will incur added hospitalization costs.  But KPs are largely not budgeted or prioritized for additional counseling, care, and support in order to ensure their success.  More funding should be focused on KP competent service provider training and gender and sexual diversity training.  PEPFAR got out in front of this by requiring countries to undertake this in 2015 and 2016, but this effort has fallen by the wayside subsequently.        

Global experience has shown that in order to make an impact with KPs, KP communities and CBOs must be at the heart of the response and they must be at the table in national and sub-national planning bodies in order to advocate for appropriate services.  These groups must be supported with organizational support to develop the complex infrastructure for not only prevention but clinical service delivery, and the complex and burdensome monitoring required by PEPFAR to ensure that KPs are monitored for success — for PrEP, testing, or treatment initiation and retention.  KP organizations were formed as a response to terrible loss and tragedy from disease and death in their community, who saw partners and friends die.  They are not public health experts with management and statistical expertise, but they are committed and dedicated and ready to take on new roles in order to see the horror of HIV leave their community.  These groups rightly focused on awareness-raising, prevention, and testing.   And while the benefits of PrEP have been increasingly noted globally, especially among KPs, PEPFAR has only begun to support these groups for this critical prevention area.  And as studies have increasingly documented that undetectable virus means no new transmissions (U=U), this puts the onus on KP CBOs and communities to support dedicated efforts toward treatment success in a paradigm shift for groups that have often focused solely on prevention and referral.  

Who is being left behind?  Global HIV prevalence rates have gone down as a result of the unparalleled response to HIV.   Yet KPs continue to bear a disproportionate burden of HIV prevalence.  UNAIDS shows that as national responses go down, the proportion of new cases attributable to KPs and their partners rises.   In concentrated epidemics, those with less than 1%, UNAIDS estimates that 85% of new infections will come from KPs and their partners.  Do PEPFAR’s investments match this?  And when we consider that HIV prevalence is 1-2% within an increasing number of SSA countries, such as Nigeria and Ethiopia and numerous in West Africa, we need to give pause and reconsider PEPFAR’s investment.  In countries within SSA, where overall HIV rates have decreased, UNAIDS and global experts have estimated that the proportion of new cases from KPs, particularly from sex workers and MSM and their partners, is at least 46%.  But PEPFAR’s investment does not match this changing epidemiology.  Even in generalized hyper-epidemic contexts such as those in southern where cases attributable to KPs and their partners are smaller, the attribution of new cases from KPs and their partners is at least 25% — for example Barel et al., has estimated that in South Africa new cases from sex workers and their partners is 18% and another 8% attributable to sex between men.    

What does PEPFAR’s commitment mean to this dynamic?   Will focus on treatment without targeting KPs specifically give impact to decreases in new infection rates or will they be left behind?

About GBGMC

Founded in 2018, Global Black Gay Men Connect is a group of Black, gay, bisexual and same-loving men forming a movement internationally to empower our communities, foster resilience against oppression and initiate an ever-growing platform for our collective voices to be heard.

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