Htun Htun Aung: HIV patients should not be hidden away as if we bring shame on the community
Myanmar is among the world’s 30 high-burden countries for tuberculosis (TB), multidrug-resistant-TB (MDR-TB) and TB-HIV. Every day, The Union works to reduce the burden with a network of community-based volunteers who deliver medication, spread information and awareness, and assist with treatment adherence.
Htun Htun Aung is an active volunteer who works closely with this volunteer network specifically for people living with HIV (SPECTRUM PLHIV) in Mandalay and has first-hand knowledge of The Union’s Integrated HIV Care (IHC) programme, which delivers antiretroviral therapy (ART) and screens patients for TB.
“I was tested for HIV in 2004. The result was positive. I am HIV positive and always will be. But when I was first diagnosed, I didn’t know what to do.”
This diagnosis was traumatic on its own. But during his many early visits to local clinics and hospitals, Htun Htun realised he was not alone in lacking information and support to move forward into the best treatment schedule and care. “We were all trying to get on the ART programme but this is only suitable for patients whose CD4* count reaches below 200. But what if it didn’t? What to do until it did? I realised that I had more questions than answers at this point.”
Htun Htun made a decision to find out everything he could about living with HIV. “I was very curious about HIV infection and I wanted to help patients like me who did not have enough knowledge. HIV is a difficult disease to live with, but without proper information and support, it is impossible.” This was the start of an early volunteer network which began in 2005 and was organised by patients for patients. Htun Htun galvanised that process and led what was to develop into a major element of TB and HIV care throughout the region.
Htun Htun’s relationships with patients also became key to providing fundamental data on what they most needed. “They could talk to me because I was one of them – I understood what they were going through.” He quickly realised that care and treatment does not start and end at the clinic. “They wanted information that they could take home, show family members and refer to in the hours outside clinical appointments”. The Union’s now comprehensive concept of supporting home-based care, promoting information and sharing materials about taking medicines and living a healthy life, began here with Htun Htun’s conversations and interactions.
One issue that he identified early on was the social support needed by patients and, in 2007, he underwent drug adherence counselling training. ART is a life-long treatment and can have negative impact on families and their livelihoods – and the consequences of dropping out from treatment can be catastrophic. Counselling helps prepare the patient for the rigours of the regimen and shows the necessity of taking the medication consistently.
As Htun Htun says, “If a patient drops out, the danger is that the virus returns, takes a hold and the patient dies. A firm commitment to take the medicine - and to take it for life - is the only option. We’re not blaming patients for discontinuing treatment, but we have to show them the consequences should that happen.”
As a further resource for patients and in answer to increased demand, Htun Htun saw a need and set out to establish an information telephone hotline. This is a night-time service specialising in out-of-hours help and advice – and often reassurance. The service now takes an average of 100 calls a month from patients and their families, about any related topics. Problems with taking pills, questions about health care services, worries about day-to-day logistics all feature strongly.
One of the motivations for Htun Htun’s energy to keep working in the field and explore new ideas is he has experienced first-hand the impact of the public aversion shown to people who live with HIV/AIDS. In Myanmar, stigma and discrimination continue to be very real barriers to HIV treatment and support. “I wanted to do something about this. The disease is physically challenging, but it also creates shame. This is wrong. We are HIV sufferers but we are not to be hidden away as if we somehow bring shame on the community.”
Working inside the healthcare system and representing the needs of patients goes a long way to combatting these issues. But Htun Htun is also involved in health education awareness, working with workplaces and in schools. During these open sessions, he discloses himself as HIV positive so that those attending can meet a ‘real patient’ and ask questions. “I talk very openly about my condition. Nothing is off limits. I make it a part of the session on how to prevent infection and how to deal with HIV in the community. I think by talking frankly, people accept me – and then they accept other patients too. It’s about honest communication and education. I talk a lot!”
Dr Thet Ko Aung, who manages the HIV Programme for The Union in Myanmar, is emphatic on the difference made by the community outreach provided by the volunteer network, “Our volunteers are often TB survivors or people living with HIV, so they are well placed to advise people who need testing and treatment. They show great empathy because they understand. They are a vital link between clinic and patient – and they ensure that patients do not become isolated from either treatment or their community. Htun Htun is indispensable to the service and a role model in our community.”
Describing himself in a few words, Htun Htun said: “I can give you four. I am helpful, peaceful, reactive and, above all, optimistic. I believe that if governments and communities work together, we can achieve great things. We have proved this in Myanmar. Now we want the world to take note.”
The SPECTRUM PLHIV Network of volunteers in Myanmar are often TB survivors or people living with HIV themselves. These volunteers play an essential role in engaging the community in outreach programmes, conduct information sessions and encourage testing and treatment. The Union credits this network as being one of the primary resources for locating ‘missing’ patients and getting them in treatment.
According to the World Health Organization, the HIV/AIDS incidence in Myanmar is one of the most serious in Asia. Critical issues include the funding gap that prevents region-wide scaling up of ART and the often sporadic access to voluntary counselling support and testing. In 2015, it is estimated that 220,000 people are living with HIV, 106,490 on ART (47% coverage), 9700 AIDS deaths, 12000 new infections. These trends are declining. Source: aidsdatahub.org
Antiretroviral therapy (ART) is the combination of several antiretroviral medicines used to slow the rate at which HIV makes copies of itself (multiplies) in the body.
A combination of three or more antiretroviral medicines is more effective than using just one medicine (monotherapy) to treat HIV. It’s a life-long treatment that helps people with HIV live longer.
A CD4 count is a lab test that measures the number of CD4 T lymphocytes (CD4 cells) in a blood sample. In people with HIV, it is the most important laboratory indicator of how well the immune system is working and the strongest predictor of HIV progression.