A nearly five-month long waiting game for a response from the World Health Organization (WHO) regarding advocates’ concerns about its confusing and inaccurate statement on the relationship between some forms of hormonal contraception and HIV ended on April 5. Sadly, the response starts a new waiting game, since the long-awaited letter promised action on some, though not all, of the points raised in the original letter (sent November 12, 2015), with no timeline or process described for taking that action. (Wheels may be turning, as the link to the October 2015 statement no longer goes to the full statement.)

By way of background, in October 2015, the WHO, without warning, posted a new statement on hormonal contraception and HIV on its website. The statement claimed to be a clarification of the existing, expert-reviewed guidance on the topic. However, it contained a range of inaccurate and confusing statements that contradicted or muddied the clarity of the statement it sought to simplify.

On November 12, 2015 an international coalition of organizations wrote an urgent letter to the WHO requesting immediate action on the statement. Citing the confusion that the new statement caused in terms of the mixed evidence showing that DMPA, aka Depo-Provera, impacts women’s risk of HIV, advocates asked for the statement to be taken down so that the existing note would continue to be the main point of reference for the field. The letter was sent by the International Community of Women Living with HIV Eastern Africa (ICWEA), co-convener of a civil society working group on contraception and HIV, and AVAC. (You can read the original sign-on letter here, and see a table below that outlines the requests in that letter with the WHO response).

The letter wasn’t officially acknowledged until some months later, when ICWEA wrote requesting an update. And the response did not come in until April 5. In summary, WHO agreed to:

(1) revise the statement to correctly characterize the evidence;
(2) revise the statement to specifically reference women’s right to know about the uncertainty regarding DMPA and HIV risk.

WHO stated that it will not add reference to additional prevention methods beyond male and female condoms, even though the technical guidance refers to a range of methods. This is particularly disappointing given WHO’s strong recommendation in September for the offer of oral PrEP for “all people at substantial risk of infection”.

ICWEA and AVAC will work with partners who signed on to the original response to develop a response in the coming days. Please be in touch with ideas and reactions.

Below is what we asked for and what WHO said, in detail:

Brandon Harrison is a New York City based HIV advocate and a graduate of 2014 class of the Black AIDS Institute’s African American HIV University. He has held positions at both Callen-Lorde and the Black Leadership Commission on AIDS, providing technical assistance and support for community engagement and new HIV prevention methods.

In February at the Conference on Retroviruses and Opportunistic Infections (CROI), the Centers for Disease Control and Prevention released new data that suggest the lifetime risk of HIV diagnoses in all Americans is one in 78. More alarming than that, the analyst estimated that one in two or 50 percent of all black gay, bisexual and other same gender loving men are projected to be diagnosed with HIV in their lifetime.

While we know this population and those of the trans-experience continue to have the highest new infection rates among all other populations, these new estimates have created a state of emergency among members and leaders of this community. This is a call for action. We must save ourselves, we can no longer sit back and watch our friends, family and community members fall victim to a new HIV diagnoses. It’s our responsibility to ensure that the black community is not without the knowledge and access to the proper prevention tools or understanding of antiretroviral medications.

Lack of education and access to healthcare, cultural trauma and stigma are all part of a vicious cycle that has caused not only HIV but other health and economic disparities to continue thriving in black communities. Researchers have worked hard to development major advances in preventing and treating HIV, but unless these discoveries are appropriately delivered and implemented among those who need them most, black communities will continue to be affected negatively, greater than our counterparts. It is ultimately our responsibility to take control of our health. As Black History Month has come to an end, I reflect on how much affliction our community has faced and overcome. HIV is just another one that we can fight.

As we continue fighting to end this epidemic among black communities, I have been honored to stand here at CROI thinking about the way the people inspire me with their breakthroughs. I reflect back on the Martin Delaney Panel Discussion, one of the early plenary sessions, that discussed the need to engage men of color in clinical research. I felt the passion and heart from this session was an answer to so many pieces about the other things that act as barriers in the lives of men of color. I look at this conference and the science coming from it and think we have to figure out how to guarantee access to this new promising research. You have to be able to engage these at-risk folks and keep them in the study because whatever strategy you develop has to work for them. I leave you with the words of Harriet Tubman, “If you hear the dogs, keep going. If you see the torches in the woods, keep going. If there’s shouting after you, keep going. Don’t ever stop. Keep going. If you want a taste of freedom, keep going.”

Stephen Chukwumah is an AVAC collaborator in Nigeria, working on biomedical HIV prevention with key populations. Here he reflects on the need for an African LGBTIQ Youth leadership movement. (This blog first appeared on Alturi).

“Imagine if we had a movement that is led by young LGBTIQ Africans addressing the issues in Africa and doing research on how homosexuality has always been in African cultures,” says Stephen Chukwumah as he addresses his frustrations with the journey towards equality. “Then, a young person would have the right to say that he or she is gay.”

Stephen Chukwumah is a regional and international human rights activist working on issues affecting lesbian, gay, bisexual, transgender, and intersex (LGBTI) youth from Nigeria, his home country, and beyond. But in terms of age, how does the international human rights community define a young person, and more specifically, a young LGBTI person? Stephen may argue that this question and the issues at stake for the community need to be primarily addressed by youth like him.

At the age of 19, Stephen began his journey as a youth activist when he moved to eastern Nigeria to help form Improved Youth Health Initiative, an organization concerned with educating key populations like LGBTI youth on issues of sexual health and rights. Stephen grew up in the city of Lagos, to the west, where he was trained as a peer educator by the Lagos state government through their National Youth AIDS Program. He quickly began to develop an understanding for the needs of LGBTI people at home and felt that LGBTI Nigerians in the eastern part of the country, particularly young people, were facing a lack of resources in support of the same type of trainings and advocacy present in Lagos and the capital city Abuja.

While Stephen got his start as an activist for sexual and reproductive health rights at the local level in Nigeria, he has used his platform and knowledge to advocate for LGBTI youth at the regional and international levels as a member of the Global Forum on Men who have Sex with Men (MSM) & HIV’s Youth Reference Group and as an International Youth Activist for Advocates for Youth. One of the most pivotal moments for youth activists in Africa happened at the 2015 Changing Faces, Changing Spaces Conference in Kenya, where Stephen was invited last-minute to sit on a panel discussing issues affecting young LGBTI people. During this panel, young LGBTI Africans decided that their community needed a formal organization that could be a collective voice on a wide-range of issues affecting their youth-centric movement.

A major discussion point during the panel was the need to “change the narrative that is happening in Africa where they are saying that young people are being influenced into homosexuality,” says Stephen. “To let them say that no, that is not the case, young people are not being influenced into homosexuality, they are just now being given the opportunities, support and the space to talk about the issues that affect them.” The African Queer Youth Initiative, the organization formed as a result of these discussions, hopes to rewrite the painful and often dangerous narrative surrounding LGBTI youth across the region.

The initiative’s advisory board members and newly engaged young activists will hold their first organizing meeting on the margins of the Pan Africa ILGA Regional Conference in May 2016. While a main goal of the meeting will be to establish an organizational structure, Stephen says that it will also act as a forum for young LGBTI Africans to express the community’s greatest adversities. “Young people are turned away from their homes because their parents reject the idea of homosexuality, or they don’t feel comfortable staying home because it affects their mental well being,” says Stephen, addressing a multitude of intersecting factors. Stephen also says that it is important to remember that these issues become magnified if a young person is largely dependent on his or her family for economic survival or is HIV positive.

In addition to issues of homelessness, Stephen expects his fellow advocates to address how LGBTI youth in Africa are dealing with a wide-spread, multi-front battle against discrimination at school and in the home, HIV/AIDS, free access to condoms and lube, and drug addiction.

An overarching challenge faced by the African Queer Youth Initiative will be to dismantle the pervasive myth within the LGBTI community that young people are not responsible and professional enough to operate successful organizations and campaigns in their home communities.

“On a regional or local level, there is a competition for the little funds that are available to LGBTIQ communities in Africa,” says Stephen. “So activists already working on these issues don’t want the youth to interfere.” Stephen believes that young people need to be supported by the rest of the LGBTI community so that the movement as a whole can work towards securing fundamental human rights in Africa.

Stephen says that there is a popular saying in Nigeria: “It’s he who wears the shoe that knows where it hurts.” The LGBTI community at large may possess the willingness to work with their younger counterparts, but they must begin to build an inclusive atmosphere that gives the up-and-coming activists the space and encouragement they need to lead their grassroots movement, he believes.