Afya Bora, Utu na Kinga (Positive Health Dignity and Prevention in Swahili)

“Positive Health Dignity and Prevention (PHDP) is an empowering concept that has managed to bring together the diverse networks of people living with HIV (PLHIV) in Tanzania to work towards one important goal that we are passionate about,” said Sammy Musunga, of the National Council for People Living with HIV and AIDS (NACOPHA). Speaking at a board meeting of the Global Network of People Living with HIV/AIDS (GNP+), held in Cape Town early in April, Musunga described some of the challenges and successes introducing Positive Health Dignity and Prevention (PHDP), a new HIV prevention framework developed by people living with HIV, into his country.

But first some background on Positive Health Dignity and Prevention. This new framework emphasising the human rights and health of people living with HIV evolved partly as a response to “Positive Prevention” an earlier attempt by public health officials to engage HIV-positive people in HIV prevention efforts. Many people living with HIV felt ‘positive prevention’ placed the responsibility for HIV prevention almost entirely upon those who had tested HIV-positive — as if they were solely to blame for HIV transmission and needed to be ‘controlled’, often via punitive measures.

“We held an international technical consultation in Tunisia in April 2009, where people brought examples from various regions, of the kind of messaging that is in their country around Positive Prevention”, said Georgina Caswell of GNP+. “The messaging said things like: ‘PLHIV should not have sex, or ‘PLHIV need to be careful’.”

Such messaging from public health officials is very destructive at a time when HIV-positive people are being treated as criminals in some countries, and being prosecuted for not explicitly disclosing their HIV status prior to high-risk behaviour, or even for actions, such as spitting, that would be extremely unlikely to expose others to HIV infection.

At the 2009 technical consultation in Tunisia, the activists concluded that prevention programmes must emphasise that HIV prevention is a shared responsibility (in other words, in the context of consenting adults, that everyone has a responsibility to take precautions to protect themselves) and not simply place the burden on people living with HIV. In addition, the framework describes a number of better ways to support HIV-positive people so that they help others avoid becoming infected.

These include ensuring that there is a supportive and protective legal and policy environment with the decriminalisation of HIV non-disclosure, exposure and non-intentional transmission — and making certain that there are programmes that support people, so that they know their rights and have access to legal services when those rights have been violated.

Other human rights protections are needed for key populations at risk of HIV, with steps including repealing sodomy laws persecuting of men who have sex with men, removing criminal sanctions on sex work and allowing the provision of evidence-informed harm-reduction programmes for people who use drugs — as well as increasing access for these populations to health services and support. Women’s rights and access to the full range sexual and reproductive health services must be established.

Countries must take other steps to fight stigma and discrimination against people living with HIV including making housing and employment discrimination against people living with HIV illegal. HIV-positive people should be empowered and engaged in the development of HIV support services and prevention programmes.

Finally, health promotion, with access to HIV testing with reliable linkages to care and treatment, including ART for all those needing it for their own health are essential for the health of the individual, and a number of studies recently have noted that effective treatment has public health benefits, in terms of reducing HIV transmission.

“Positive Health Dignity and Prevention argues that if you improve and if you maintain the dignity of the person living with HIV, and if you support the individual living with HIV around their broad health needs, this will result in a range of benefits including a reduction in the likelihood of new infections,” said Caswell. 

Musungu said that in early discussions with key partners – UNAIDS and TACAIDS in Tanzania –  the participants were impressed by the richness of PHDP.

“In particular, we’ve embraced the concept of regaining our dignity, that the responsibility for HIV prevention is shared — whether HIV-positive, HIV-negative or unaware of your status — and that we people living with HIV need to take leadership in defining HIV Prevention, as it relates to PLHIV and AIDS,” he said.

In line with GNP+’s Leadership Through Accountability programme, the next step planned to move PHDP forward in Tanzania was expected to be operational research — similar to what the previous blog post on Kenya described — to assess the ‘health, dignity and prevention’ needs of people living with HIV in Tanzania. So the activists adapted a questionnaire into the local language and developed the study methodology. They planned on engaging young people living with HIV as data collectors, with training supplied by the Population Consul using Personal Digital Assistants to collect data from 580 interviews. Then they sought ethical approval from the National Institute of Medical Research (NIMR) in Tanzania. Unfortunately, here there was a hitch in the plans. “We are still waiting for ethical approval, one year later, because of bureaucracy it’s not easy to get approval within a short period of time.”

Unlike well-funded biomedical research, community research efforts are not always prioritised by local authorities, and HATIP would like to call on anyone with influence with NIMR to contact them, and urge them to allow this survey to move forward, as it is needed to help show NACOPHA and other activists where to focus their efforts. The research is also needed to establish a baseline to monitor and evaluate the activist’s effectiveness and the government’s responsiveness.

“But what does it mean? Having not done research doesn’t mean that the advocacy work should wait until we gather the data,” said Musungu. “No, we need to keep on sustaining the momentum with GNP+ and UNAIDS on advocacy work.”

So following consultations with PLHIV, NACOPHA held a broad stakeholder meeting to discuss the development of operational guidelines for Tanzania, with the PLHIV Networks (there are 10 national networks of PLHIV and there are 80 established PLHIV district clusters), TACAIDS (Tanzania Commission for AIDS), the NACP (National AIDS Control Programme) and the UNAIDS Country Office to discuss the development of operational guidelines for PHDP in Tanzania.

At the meeting, they discovered that the government had already developed draft guidelines on Positive Prevention. NACOPHA then was able, with the help of a letter from UNAIDS, to convince the local authorities that Positive Prevention was an outdated concept that had been replaced by Positive Health Dignity and Prevention, and to incorporate the key components of PHDP into the Tanzanian plan.

“Some agencies already developed or had ‘positive prevention’ plans in place with activities narrowly focused on condom distribution and STI treatments. And the danger is that they just change the name from ‘Positive Prevention’ to ‘Positive Health, Dignity and Prevention’ but when you look at the content they still reflect ‘Positive Prevention’ issues. So at least now we can say — although it’s still a challenge — at least there’s been some shift in thinking. People are thinking in terms of PHDP. So what we have to do now is to translate their thinking into practice,” he said. “But the Government is taking the concept very seriously because of the advocacy and a culture of engagement of PLHIV in HIV and AIDS Prevention.”

Next, the activists hope to develop a monitoring tool.

“We are thinking of developing a monitoring tool on how to operationalise Positive Health, Dignity and Prevention in the field, and to monitor how the shift in terms of thinking from PP to PHDP affects practice,” he said.

He stressed however that ethical approval for the operational research is needed to move forward, as “the results will help us develop indicators to monitor how Positive Health, Dignity and Prevention is implemented in Tanzania, and how it impacts on the lives of PLHIV in Tanzania. And in the meantime, we are thinking that the guidelines that we have developed in Tanzania also is going to contribute to the global guidelines being developed by GNP+ on PHDP.

Caswell agreed and although things didn’t go exactly as planned in Tanzania, in terms of starting off with operational research, she said “one of the things that we’ve learnt from NACOPHA, is how you just need to continue and have a different understanding of evidence as well. Because the meetings held, the information gathered from the consultations and from the stakeholder meetings — that is evidence as well. Also, the partnerships that have been developed in the process, all of that really helps to drive forward advocacy at national level.”

She added that similar efforts have been successfully moving forward in other countries, such as Vietnam, Zambia and Namibia.

“In Zambia, they have used the data from the stigma index, from all the tools, to inform the actual content of the Zambian National Operational Plan. So it’s been really exciting to see it. In a way, we need to move fast because right now a lot of national strategic plans are under review. And what the networks are doing is saying to their governments, ‘’Look this is what is being discussed internationally. So if we don’t put it in now our plan is going to look outdated.’ And each country is sort of learning from the other country about the kind of activities that can be incorporated. And our operational guidelines on this will definitely help this programme.”

Of note, although USAID has come under fire for, perhaps inadvertently, funding initiatives that have contributed to the criminalisation of HIV in parts of Africa, PEPFAR has developed now a website to provide people living with HIV with prevention resources. The listings here are particularly rich, and contain the final draft of Positive Health, Dignity and Prevention: Technical Consultation Report. With so many national strategies reviews underway, PEPFAR’s provision of these resources is fortuitious.

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