Yupa, 46, from Lamphun, Thailand, is advocating for women to have more choices and control over their own sexual and reproductive health and HIV treatment.
Interviewed by Gemma Taylor.
“A woman’s HIV treatment must be her own business,” says Yupa.“Too often other people are deciding what they think is best for women, without knowing an individual’s situation or needs.”
Yupa was tested for HIV when she was 8 months pregnant. The test was compulsory. “I remember how out of 20 expectant mothers, I was the only one called back.”
“One minute I was looking forward to my baby arriving, the next I was full of fear. I had no way to act on the news I’d just received.”
“My husband presumed he was HIV positive too but refused testing. What was the point? It was 1994 and there was no treatment available. He died from ‘unknown causes’ when my daughter was 6 months old. I was just 20.”
“Would I have chosen to be tested, had I been given the choice? Actually, yes. But it should have been my decision not forced upon me. I’m still glad I knew, as I started to get information.”
“In 1997 a nurse recommended that I joined some activities run by the Thai Network of People Living with HIV (TNP+). I’m a farmer, so at the beginning, I didn’t understand a thing. They talked about HIV and how to stay healthy, and about drugs that were available in other countries.”
From farmer, to treatment activist fighting pharma
“At first I’d be glad to get back home to the vegetables, something I did understand!
But I knew I needed to learn more about HIV and was happening with me so I could look after my child. So I persevered. I became the TNP+ coordinator for Thailand’s northern region.” (Yupa later stepped back to spend more time at home but continues to work for TNP+ and support HIV groups).
Seven years after testing positive for HIV, Yupa started treatment. “In 2002 Médecins Sans Frontières (MSF) had a quota of treatment that they were making available to activists.”
“It was life-saving. I could plan my future. Over the years, like so many other people, my treatment had caused significant side-effects, but still, naturally, we were just so grateful.”
“We are still grateful to be alive. However, as treatment has developed and improved, it is no longer enough to demand treatment, but to demand the best. If optimal treatment exists why should one person receive it but not another? Optimal treatment can add years to peoples live and improve those years.”
“Personally, I would like to have the option of a dolutegravir (DTG)-based combination. Researchers I know have told me about the positive results observed, even in very difficult cases, and also for children.”
“DTG is important because it is harder to develop resistance to. It can make life, travel and daily activities more flexible, as it can be taken just once a day and without such strict timings. For me, the fact that it has fewer side-effects means it is the better pill to take for the rest of my life.”
“Thailand has been waiting a long time to access DTG, we are behind many other countries.
As treatment activists we know about the benefits and we were also informed about the potential risks.”
Yupa is referring to the, now further interrogated, safety concerns which were raised back in May 2018 when initial studies highlighted a possible link between DTG and birth defects in infants born to women using the drug at the time of conception. New data from two large clinical trials comparing the efficacy and safety of DTG and EFV in Africa have since expanded the evidence base. WHO states that the risks of neural tube defects are significantly lower than what the initial studies may have suggested.
In July 2019, based on new evidence assessing benefits and risks, the WHO recommended the use of the HIV drug dolutegravir (DTG) as the preferred first-line and second-line treatment for all populations, including pregnant women and those of childbearing potential.
This recommendation means that countries are now able to amend their national guidelines using these recommendations as a basis. Thailand is expecting the national guidelines to reflect WHO advice this year (2020). “I’m really looking forward to having DTG, especially for the long-term benefits,” says Yupa.
Yupa is concerned with ensuring that health workers have up-to-date information and can advise women, and all people, of their options accurately.
“TNP+ organises training on new medicines and new recommendations. Often we have the information before local practitioners. Some are very open to receiving the information from us, whereas others don’t like that we know first.”
“Due to previous concerns with DTG, it is important that women aren’t receiving old information – and therefore old drugs as a result.”
“Even before the evidence-base was expanded and findings updated, it was never OK to deny all women of reproductive age. WE can decide if we are planning families, or at risk of unplanned pregnancy, we don’t need that deciding for us.”
More affordable drugs = more people treated = more profit
Yupa believes the government needs more choices itself when it comes to procuring optimal drugs at fair prices. “The government needs to introduce more competition in order to have more choices itself, which it can then pass down to individuals.”
“DTG is not affordable. For it to be available for everyone via the Universal Health Coverage (UHC) scheme [Thailand’s national health system] the price has to come down. I’d make the argument to a pharmaceutical executive, that if the price is lower the demand will go up, so overall the company’s profits would increase.”
“Until all these things are in place – affordable treatment, non-discriminatory services for people living with HIV, and sexual and reproductive health rights – women still do not have complete control to make the decisions that are right for themselves and their families.”
“I gave birth isolated. Now I’m a community leader for people living with HIV.
The daughter I gave birth to is now 23 and has graduated as an engineer.
I hope her generation will have the choices that we didn’t. The future generation will have less fear, be better educated, and have better treatment.”