Strengthening community participation is crucial for ending AIDS

Beryl Osindo, CNS Correspondent, Kenya
Photo credit: Beryl Osindo
HIV/AIDS remains an epidemic in several countries, but major milestones are yet to be reached. In order to achieve the ambitious 90-90-90 targets of UNAIDS by 2020 and to eventually end AIDS by 2030, many countries have incorporated plans that address evidence based studies, systematic scientific findings, and training programs that include people from diverse backgrounds. Notably, key messages around the infection have been shared.

These include treatment as prevention through use of anti-retrovirals (ARVs) to suppress the viral load, PrEP (pre exposure prophylaxis) to protect HIV uninfected people from acquiring the infection, behavioural changes, and stigma reduction. This integrated approach to help bring down new infection rates is being used by healthcare personnel to create awareness about HIV and help sustain viral suppression in those living with the disease.

While scientific efforts are underway to find newer tools for protection, including a vaccine, the comprehensive plan seems to fail to take cognizance of the inputs from key affected populations. Apparently, they are treated only as part of the statistics, and not included directly at the negotiation table of decision-makers. We wrongly assume that everybody is on the same page as we discuss the importance of various tools to prevent the spread of HIV infection. Are we reaching out to the audio/visual-impaired people to inform them well enough? Who addresses the needs of the LGBTQ (lesbian, gay, bisexual, transgender, queer) community and the mentally-challenged people?

It is common knowledge that if left unattended, the HIV virus weakens the body’s immunity, and increases the possibility of acquiring opportunistic infections like TB. For people living with HIV (PLHIV) who acquire multi drug resistant TB (MDR-TB), disability becomes a serious concern, as side effects of the highly toxic MDR-TB medication could lead to sight and hearing losses.

There are serious direct as well as indirect consequences of HIV, especially for the uninformed and high risk populations. This was brought out very clearly at a webinar recently organised by CNS on ‘More needs to be done along with 90-90-90 to end AIDS’. Sowmya, a noted transgender  activist, outlined some trans issues that must be addressed by India to reach the UNAIDS 90-90-90 goals.

“We need to provide livelihood to transgender women. Nearly 70% of the transgender women in India are engaged in sex work, in the absence of other employment opportunities. So be providing suitable employment to the trans-women community we can prevent HIV. We need to design programmes keeping in mind the needs of the transgender community; eliminate stigma and discrimination so that they can access HIV services like ART, and improve adherence”, said Sowmya.

It is high time to generate productive and inclusive conversations that will drive policymakers and governments to embrace a change. Marginalized groups must not be left behind. Their rights must be echoed in the narratives around ending AIDS so that stigma ends and access to medical services increases.

Another webinar panelist Amruta Soni, a transgender PLHIV, urged for a single window system where the community could access ART and other services easily—“We still face stigma and discrimination at the ART centres because many services are still not easily accessible for us. Many transgenders take hormonal replacement therapy (HRT) as well as ART together, but at times even doctors too not aware about the medical consequences of this, including side effects. Stigma is such that they are not ready to talk to us. Community needs to speak now and ART centres need to speak with the community”.

Community-based workers have been playing a key role in advancing 90-90-90 goals. These groups are essential in promoting inclusivity, especially when a multi-sectoral approach is needed in the administration of healthcare services. But this will only cover part of the 90-90-90 programme if the disabled and mentally-challenged people are neglected.

As the world changes rapidly, people are changing conversations. Audiences are highly informed and interactive, but this mostly applies to the majority that does not have any impairments. Those who are illiterate or need some form of translation or interpretation seem to be left behind. It is vital to find out what the affected community groups feel about the costs of prevention tools, and their level of awareness about the treatment regimen. Conversations around ending AIDS should also include those that are differently abled if the reality of providing sustained ART to 90% of the PLHIV globally is anything to consider by 2020.

This issue cannot be left to the policymakers alone, because many of us have been affected in one way or the other by this disease. We all know how it feels to lose a loved one, and if we care enough, then we should be compelled to involve, and include inputs from, the marginalized populations in decision-making processes.

Beryl Osindo, Citizen News Service - CNS
December 12, 2018