Noi, 48, is a regional coordinator for the Issan region of Thailand, with the Thai national network of people living with HIV (TNP+).
Using primary research, she is turning individual concerns about sub-standard HIV treatment into actionable evidence in order to “create demand and then demand the best!”.
“In 1995 I lost my husband and one of my children in the same year,” says Noi, 48. “My husband died from pneumocystis pneumonia (PCP). The doctors had a policy not to treat HIV positive patients as they were going to die anyway and they didn’t want to ‘waste resources’,” says Noi. Noi lost her whole family to a lack of treatment, her husband and two young boys.
Like many women at the time, Noi found out she was living with HIV during pregnancy. This was in 1992 and there was no treatment available in Thailand. It would be 10 years later, in 2002, before Noi received ARVs.
In the last 17 years, HIV treatment has significantly improved, and Noi, who first turned to TNP+ for support is now a regional coordinator and role model, supporting others.
Noi remarried and with the support and knowledge she gained from TNP+ accessed treatment that prevents parent to child transmission (PPTCT) and her third child is now a teenager. So why, what seems like a lifetime later, is it still necessary to be a treatment activist?
People are still dying
“After losing a family…” Noi says. “Well, no-one should lose a family. That continues to drive me.”
“Yes we have treatment, but people are still dying from lack of access or dying early due to sub-standard treatment.”
“I personally am not benefitting from the most recent advancements in treatment. I do not know anyone inThailand who is.”
Noi’s current treatment (EFV/FTC/TDF) is just one pill a day. To begin with, the side-effects were a struggle but she was advised to stay on course due to a lack of alternatives. “It improved, but I still have side-effects,” says Noi.
“When you develop side-effects the doctor doesn’t change the regimen but instead prescribes more meds. Meds for the diabetes, for the cholesterol, for the loss of bone mass, and then more pills for the side-effects of those pills!” says Noi.
“It makes me worried about the long-term.”
Noi says that if the choice existed for her she would switch immediately to dolutegravir (DTG). DTG has a high barrier to resistance, suppresses HIV viral load quickly, and is usually well-tolerated. In June 2019, the World Health Organization (WHO) recommended that all countries immediately adopt DTG-based regimens as the preferred first-line treatment for HIV.
“It’s a dream drug because it is so much more friendly to use,” says Noi. “Too many people are still on complicated cocktails with significant side-effects. Plus people are starting to hear about how it can work for people with resistance to other drugs.”
Big pharma: “detached from reality”
The price charged for DTG, by the originator company, ViiV Healthcare, has fluctuated from country to country. Despite ViiV not filing a patent in Thailand there have been no generic versions have been available either, and the high price tags elsewhere meant the Thai government recommended DTG only as third-line in order to keep demand and costs down for what was seen as an ‘expensive drug’.
Generic versions of DTG are expected to be accessible in Thailand this year (2020). Two generic companies have filed for registration (one approved and one pending at the time of publishing), although there is still a lack of clarity around pricing.
It is anticipated that the amended national health guidelines, which are expected to be published early 2020, will adopt the WHO recommendation to make DTG available for all people living with HIV. In order to achieve this, the price of DTG must be affordable.
A patent has been filed on a DTG combination drug, despite the same patent being rejected in the EU. If successful in Thailand, this would push the price of DTG up, threatening universal access. AIDS Access Foundation and TNP+ have filed two third-party observations to oppose this unmerited patent.
Six years after the drug was first approved, still no-one in Thailand is accessing DTG via the health system.
Noi believes the high prices are a factor in understanding why Thailand is late to access DTG.
When asked if she thinks pharma execs would still overprice drugs if they could walk in her shoes, if they could see her first husband and two babies die, she replies: “Oh, they know.”
“They know the damage, but they put business first. They detach from reality while mothers detach themselves from their children.”
“However, now the drug is anticipated in Thailand, we need to ensure it gets to everyone who needs it. It’s not just case of getting the drug into the country. The government needs to recommend that all people living with HIV have DTG available as an option. Ministries also need to work more with the primary care system, at all levels, to ensure that they really understand. In my experience, just because you have a national policy it doesn’t necessarily change at local level.”
Making Thailand ‘DTG-ready’
Noi and the rest of TNP+, in conjunction our partner AIDS Access Foundation and other allies, are making Thailand ‘DTG-ready’.
Noi has been collecting research from within TNP+’s 20,000 strong network.
“We already knew that side-effects from ARVs was a common issue. At the start we were working on a case-by-case basis, but we found that doctors can be reluctant to change a person’s treatment.”
Because of this, Noi reflected on how to change people’s experiences from something deemed as anecdotal into something actionable.
“I started collecting data. The aim is to collect quantifiable evidence, and use that to provide both the patients and doctors with increased treatment literacy and confidence – and change the system.”
“We need to change attitudes to change treatment options. My motto is ‘create demand, then demand the best!’.”