“[WHO's guidance] must be translated into clear, simple language that allows women to make genuinely informed decisions about family planning and HIV risk,” said Lillian Mworeko, East Africa regional coordinator of the International Community of Women Living with HIV/AIDS (ICW), in a statement that also called for UNAIDS to disseminate a comprehensive communications strategy. “Women at high risk of or living with HIV still have a right to informed consent, which includes the right to information that affects their health.”
Paula Donovan, of AIDS-Free World, also criticized WHO’s process and its communications. She accused the agency of using confidentiality agreements distributed at the original high-level meeting as “gag orders” that prevented the few women living with HIV present from reporting back to their networks on proceedings .
“The WHO believes that their job is to take information in… sort through it, decide what they think people should know and create the message,” she told IRIN/PlusNews. “It’s a very one-way information stream, and that’s simply not the way you communicate with women in order to solve the problems that women [face].”
“What they’ve done is say that hormonal contraception is perfectly safe, but what they’re really saying is that it’s perfectly safe if you use a condom,” said Donovan, adding that, in reality, most women opt for hormonal contraception because they are unable to negotiate condom use.
The state of play
In an effort to communicate their findings, WHO has translated its technical guidance into Spanish and French – official UN languages – and made special efforts to produce the document in Portuguese to cater to lusophone African countries, according to Mary Lyn Gaffield, a WHO epidemiologist who coordinated the high-level meeting. She added that a Russian translation is in the works, and there are options for groups wishing to translate the guidance into local languages like Swahili.
WHO’s next attempt at a communications strategy will take place this week in Geneva, according to Donovan, who added that she has received a completely revamped confidentiality agreement ahead of the talks. It should allow participants to communicate more about the proceedings – something WHO is banking on, according to Gaffield.
“We are definitely relying on others to help us communicate, because our role is the synthesis of technical information and then we work with others to help disseminate that,” Gaffield told IRIN/PlusNews. “We’ve heard from them loud and clear that this can’t just be a top-down process… We believe that civil society organizations have different avenues and better expertise in working with communities.”
But according to Warren Mitchell, the executive director of the global HIV prevention organization AVAC, the delay in getting information to women may be partly due to the nature of the message itself.
“I think that part of the challenge is that we’re fundamentally communicating uncertainty,” he told IRIN/PlusNews. “Usually when we’re communicating, we’re trying to convey nuance and understanding. Here, we’re trying to communicate complexity and relative uncertainty, and that may be where the greatest challenge lies.”
“We’re going to have to live in this land of uncertainty at least for a number of years without definitive research results…” Mitchell added. “What’s clear is that we need to expand the contraceptive method mix… and that doesn’t just expand magically.”
According to a survey conducted by the ICW, this uncertainty has led many healthcare providers to say nothing at all. While all healthcare workers surveyed were aware of the new guidance, none had begun communicating it to women, fearing that female patients might abandon the shot without considering other forms of contraception.
Despite the possible elevated risks of women on the shot transmitting HIV to partners, service providers also assumed all women seeking injectable contraceptives were HIV-negative.
In countries like South Africa and Uganda, which have used hormonal contraception to try to reduce unwanted pregnancies and maternal mortality, healthworkers fear that women will not be able to access or use other contraception, says Donovan.
“Some people have questioned whether we should withhold the information that this might be bad [or] might be good because they feel there’s nothing else women can do to prevent pregnancy,” she said. “They think, ‘If we say this is a rotten drug now and we find out later it’s great, then what if we scared women?’
“Yes, that would be terrible, but the answer isn’t to withhold information and coerce women into choosing contraception by only giving part of the answer,” she adds. “The answer is to have enough respect for women to assume informed consent is their right and that they need to know all the information that is relevant.”
The road to an answer
The world will have to wait more than four years for a definitive answer about whether contraceptives like Depo-Provera increase HIV risk, but scientists have wasted no time in attempting to formulate a roadmap to that answer.
An international team of researchers from South Africa’s Wits Reproductive Health and HIV Institute (WRHI), the US-based University of Washington Departments of Global Health and Medicine, and the nonprofit FHI 360 – with funding from the US National Institutes of Health – have begun formulating a concept note on a clinical trial that could be the world’s first to examine whether hormonal contraception does indeed increase HIV risk, according to Helen Rees, WRHI’s executive director.
The three research organizations are now developing possible clinical trial guidelines. Once the proposal is complete, they hope to approach various donors for funding. According to FHI 360′s Charles Morrison, the trial will likely randomize women to arms comparing hormonal injectable contraception to nonhormonal methods, such as intrauterine devices, following small studies from South Africa’s Eastern Cape province that have shown high levels of acceptability among women to such randomization of methods.
– Provided by Integrated Regional Information Networks.