Kularb’s story: Optimal treatment would reduce HIV-related stigma

Interview by Gemma Taylor.

“I was told I’d have to wait for 10 more people to die before I could get treatment.” Kularb found out she was living with HIV at the same time that she was expecting her baby. “My husband’s parents were so afraid of becoming infected that they tried to force me out of their house.” 

“Soon after my son was born they succeeded. When my husband was working away they made me leave. I had no money. All I was carrying was my newborn – their grandchild. I carried him to the hospital where I was given some money to travel to Wat Phrabat Nampu, it’s a temple famous in Thailand for people living with HIV with nowhere to go. I hitch-hiked and caught buses with my baby to get there.”

Kularb, now 47, doesn’t blame her in-laws. “They were acting out fear. There was so much stigma at the time. It has got a lot better, but it still exists and there’s more to do.”

Kularb (left) with Noi and Jupa, who are also regional coordinators with TNP+. Noi (centre) agrees there is a link between optimal treatment and stigma and discrimination. “It’s not just stigma from others, but self-stigma also improves when you have less pills to take and there are less side-effects.” Bangkok, Thailand.

Kularb was diagnosed in early 2004 during “an era of fear”. This was fuelled by the fact that antiretroviral drugs (ARVs) were not yet available via Thailand’s national health programme. It would be another year before they were, and Kularb wasn’t to know that at the time.

What she also didn’t know, was that while she was at the temple her husband was looking for her. He asked around finally found her. “He loved me regardless,” she says. “He told me we should move out of his parents and we rented a house.”

Once they were in their own house “it lifted my spirit a lot”, says Kularb, but over the next year her health deteriorated significantly. “I was so ill. I had TB and constant diarrhoea. This meant I was weak and lost a lot of weight, which also meant I lost my job.” When Kularb should have been settling in to life as a new mother, instead she recalls: “I was thinking I would die.”

“A health worker told me that the district hospital had a quota of ARVs to prescribe so I went along.” She discovered that the quota available was for just 30 people. “I was placed 40th on the list. That meant I would have to wait for 10 more people to die before I could get the treatment.”

“When you are very ill you don’t think about stigma and discrimination. You just stay in bed, hoping to get better, but worrying about death.”

Kularb began treatment almost a year later. “I think it’s really important for a person’s recovery that they can go back to society. Yet, it’s only when you are well enough to go back to the community that you realize people have been gossiping.”

Treat people right

“After starting treatment my illness was still very visible. I couldn’t hide it from people in my village.” Kularb makes a strong connection between the side-effects of her treatment and the stigma she experienced.

She was initially prescribed GPOvir S30. Kularb’s health was improving but the treatment itself was resulting in muscle wastage. “My face totally changed. That’s why you can see my cheekbones still now as I lost the muscle here,” she says pointing. “The side-effects mean people really look. Whereas if people know you can live a healthy life, it not only improves someone’s life physically but stigma decreases too.”

“It wasn’t just neighbours and people in the town, I also experienced stigma at the healthcare centre. I saw how nurses treated children whose parents have HIV. That’s when I thought, ‘I have to survive to take care of my kid, so that I can protect him from this!’. I started seeking out information on what I could do to take better care of myself.”

Not all treatment is equal

Kularb sought advice from the Thai Network of People Living with HIV (TNP+) and was soon passing on the advice she received to others. Over the past 15 years the network has been “like a family” and since 2007 she has been the provincial coordinator for TNP+ for the Lopburi area, and regional coordinator of Thailand’s central region since 2018. Where previously, Kularb used to experience stigma when accessing medical services, she is now a volunteer at the hospital providing support to people living with HIV.

As a treatment activist she believes that in Thailand, and globally, the goal must be for the best treatment. “You achieve three things if you have optimal treatment – better quality life for people living with HIV, you reduce new infections, and you reduce stigma.”

Treatment was a turning point

“When I started recovering, that was a turning point with my family. The treatment changed their attitude. What changed was that my family no longer had fear of HIV and AIDS like in the past. My husband is free from HIV infection which proved to people that we can live together happily and healthily,” says Kularb. “I had a good relationship with my in-laws. They passed away recently and I took good care of them.”

“The drugs work. My CD4 count was 15 when I started and now it’s 1400, my doctor tells me that I’m stronger than him! I’m healthier, but why stop now? A HIV patient should be able to receive the best treatment available.” Kularb is concerned about the side-effects as she gets older.

Kularb’s current treatment regimen is TDF/FTC/EFV. “The ongoing side-effects are a concern, especially as I get older.” Kularb lists diabetes, high cholesterol and losing bone mass as her main concerns. “If the side-effects are bad for me, then it must be worse for the younger generation who, if they started treatment as infants, will have been on medication for longer. The side-effects often mean that you can’t work or study, and the fear of the personal impact is enough for some people not to start treatment at all or to give it up.”

There are more optimal treatment options available, one treatment option, depending on individual circumstances, could be dolutegravir (DTG) based regimens, but it is not yet available in Thailand. “More waiting,” says Kularb. “We need DTG in Thailand. If it is available in other countries it should be available here.”

“DTG has a very high efficacy so it will quickly reduce viral load. It means patients, like me, are less likely to become ill again. Also when your viral load is undetectable the virus is untransmittable (U=U). There are less side-effects too.”

Barriers to access

DTG is on the World Health Organization’s (WHO) list of essential medicines for first, second and third-line HIV treatment. The originator company (ViiV Healthcare) has not filed a patent in Thailand, which means generic versions are allowed to enter. Registration of a generic has been filed by Mylan and approval is expected by the end of 2019. After which there will be an additional waiting time, while procurement and processes are put in place, before it gets to the point where people could choose to receive DTG- based regimens on prescription.

Currently in Thailand, due to the originator company’s price, DTG is recommend for third-line only. The price was based on Thailand being a middle-income country. “I don’t agree with the logic,” says Kularb. “At that price it can’t be included in the universal health coverage (UHC) scheme, and individuals cannot afford to pay 10,000 baht a month.”

AIDS Access Foundation and TNP+ are therefore fighting for three things in advance of DTG becoming a treatment option in the country:

  • Advocating for DTG to be included in the national list of essential medicines for first, second, and third-line treatment so that by the time DTG enters the country it is an option for everyone who needs treatment.
  • Encouraging the pharmaceutical company (Mylan) and the government to only settle on a fair price, so the country can afford to achieve universal access.
  • Treatment activists in Thailand are also lobbying to keep the Universal Health Coverage scheme in tact, hoping that following the recent elections (March 2019) UHC is still a government commitment.

“We have hope that if we work hard enough DTG will be available within the next two years.,” says Kularb. “I don’t want younger people go what I went through. It is not necessary when the drug exists.”

“My son is 15 now, he’s tall and handsome. He is very proud that I’m a HIV activist. As a kid he would remind me, ‘it’s time to take your pills mum’.”

“Ending the national HIV epidemic depends on this. I believe we will achieve this. There is a saying Thai: ‘Jit Pen Nai Guy Pen Bouw’. It means the mind is the master of the body, and so if you are in good spirits you can achieve and deal with anything’.”