Samarn: Activists fought for my right to survive – and won

  • Samarn, 47 years old, is from the Thai Network of People Living with HIV/AIDS (TNP+), a Make Medicines Affordable partner. He and his wife, who is also living with HIV, coordinate the Klum-Peun-Wan-Mai” (literally translated as ‘Friends for New Days’) group, which supports over 400 PLHIV at Phu Kiao Hospital.
  • In an interview with Faikham Harnnarong, Samarn outlines how Thailand’s route to more accessible HIV, TB and Hepatitis C treatment – the fight of treatment activists – went hand-in-hand with his own journey for survival.

“Back in 1994, when I was in my early 20s, I fell ill while doing construction work in Bangkok. That’s when I found out I was living with HIV. At the time, there was no treatment available. I was told to prepare for death, so I returned to my hometown,” says Samarn.

© Chalermsak Kittitrakul

In 2002, the Thai Universal Health Coverage (UHC) scheme was rolling out, with the possibility of making HIV treatment accessible to all.

“I only discovered that HIV treatment was now a possibility because I had been hospitalised with tuberculosis (TB). A nurse invited me to join the local group of people living with HIV, which is part of TNP+,” recalls Samarn, who went on to become the group’s coordinator.

It took nine years for Samarn to finally receive his first antiretroviral therapy – ‘GPO-Vir S30’, a fixed-dose combination of three ARVs (NVP/D4T/3TC), produced by Thailand’s own Government Pharmaceutical Organization (GPO). It was instrumental to Thailand’s UHC system, enabling ARV scale-up, with treatment for less than US $1 per day per person [amfAR 2003].

“In 2007, five years after starting ARVs, I developed resistance to GPOVir. I was switched to second-line treatment with a soft-gel, heat-sensitive formulation of lopinavir/ritonavir (LPV/r), which I had to carry in a mini-fridge whenever I traveled. There were some side-effects, LPV/r gave me mild but continuous diarrhea. However, I was grateful to have access to it, access to LPV/r was limited due to the drug’s high price.”

Corporate retaliation

LPV/r was launched in 2000 by patent holder Abbott (renamed AbbVie in 2013), under the brand name Kaletra. It added to the World Health Organization (WHO) Essential Medicines List in 2002, and included in Thailand’s national HIV/AIDS treatment guidelines as an option for second-line Antiretroviral Treatment (ART). However, access to Kaletra was extremely limited due to the very high price of the drug.

By 2007, Abbott was selling Kaletra to Thailand for US$ 2,200 per person, per year (PPPY). Around 8,000 of the 500,000+ people living with HIV in Thailand needed Kaletra, but the national health budget could only afford to provide it to 500 of them. While people in need were going without it, Abbott made over US $1.1 billion annually from global sales of Kaletra.

The Thai government had negotiated unsuccessfully with Abbott. Eventually, with support from civil society, the government decided to issue a compulsory license (CL) for Kaletra in January 2007, enabling Thailand to import affordable, generic LPV/r (A CL is a viable, legal option under World Trade Organization regulations, to ensure that poor countries have access to quality, affordable patented life-saving medicines). Thailand’s CL brought retaliation: Abbott stopped registering all new medicines in Thailand, including Aluvia, a more heat-stable version of LPV/r that does not need refrigeration.

People have the (collective) power

After Abbott blocked access to Aluvia in Thailand, it was condemned by HIV/AIDS groups and civil society, including TNP+ and AIDS Access Foundation, who strongly supported the government’s CL decision. HIV/AIDS activists around the world organized actions across the world, denouncing Abbott’s actions in Argentina, Brazil, Canada, China, France, Germany, India, Indonesia, Japan, Nepal, Singapore, South Korea, the UK, and the US, in solidarity with Thailand.

In addition, a group of institutional investors representing about 1 million of Abbott’s 1.5 billion shares protested the company’s policies in Thailand. “I took part in the campaign,” says Samarn. “I was hoping that more people living with HIV could benefit from the treatment that I was receiving.”

Abbott announced a price-cut for around 40 developing countries to curtail its global PR debacle, offering to lower prices in Thailand if it revoked its CL. Thailand did not accept, and was, eventually, able to import generic Aluvia for 30% less than Abbott’s price, making it possible for the UHC to offer the drug to everyone who needed it.

“This was my first direct experience on how people’s power, collective and coordinated, nationally and internationally, can make expensive life-saving medicines affordable,” says Samarn. “People power influenced government policies and shed light on the unfairness of drug-pricing mechanisms.”

Hep C: Another long journey form diagnosis to treatment

In 2009, Samarn was diagnosed with hepatitis C virus (HCV) and early-stage liver cirrhosis. HCV treatment was not available under the UHC. “Again, I was sent home to wait.”

Three years later, HCV treatment – pegylated-Interferon and ribavirin (Peg-INF + RBV) – were added in the National Essential Medicines List and the UHC began to offer it to people living with HIV with HCV.  Although this meant that they should have been able to get HCV treatment since 2012, the reality was quite complicated.

The hidden costs that block treatment access

For Samarn – and many other people – the many steps and requirements for HCV treatment meant that they could not be treated at their local hospital, because provincial hospitals don’t have specialists or equipment for testing.

“I was referred to a regional hospital, 100 kilometers away from home.”

Regional hospitals are always over-crowded. “Even with appointments, patients have to wait half the day or longer to see a doctor – or they must come back if doctors don’t have enough time for everyone waiting,” says Samarn.

Although HCV treatment for Thai people is ”free” under UHC, there are many are hidden costs for patients, which are not included in cost-benefit analysis for policy-making.

In resources-limited environments, non-pangenotypic HCV treatment is cumbersome and expensive – blocking access.

“It should be no surprise that ‘time’ and ‘money’ are cited by many TNP+ members as among the main reasons why a lot of people in their communities did not get HCV treatment for many years while their HCV worsened – making a cure impossible.”

Access denied

By 2013, Samarn had done all pre-treatment tests.

“For the next three years, I saw my doctor every three months, who told me that HCV treatment was very expensive and unlikely to be available under the UHC system in the near future, but that I could be treated at a private clinic for THB 200,000 ($6,256),” explains Samarn.

“I knew, through TNP+ work, that Peg INF + RBV had been available free of charge for people living with HIV since 2012 – and that Thai AIDs activists were already discussing new, optimal treatment for HCV — an oral DAA (direct acting antiviral) called sofosbuvir (SOF) which could make interferon-based treatment obsolete. This fueled my frustration – I filed a formal inquiry into why I had been denied HCV treatment.”

In April 2016, seven full years after he was diagnosed with HCV, Samarn’s doctor put him on Peg INF + RBV. At the time, SOF was around US$ 23,000 for a standard 12-week course — too expensive for the UHC system.

12 months of sub-optimal treatment – at an affordable price

Samarn was on Peg INF + RBV for a year, a treatment that is notorious for severe side effects.

“I lost my hair and lots of weight. I couldn’t eat and I was constantly exhausted. After a few months, the side effects were so severe that I had to stop working – but I was determined to be cured.”

Unfortunately, interferon did not cure Samarn. “I was disheartened, but glad to gradually be recovering my weight and strength. I knew that activists had been working hard to make new, optimal HCV treatment affordable and available for Thai patients – and I believed their efforts would bear fruit.”

3 months of optimal treatment – at an exorbitant price

Sofosbuvir is highly effective (cures over 90%), reduces treatment time (from 48 to 12 weeks), and has minimal side effects. But SOF’s exorbitant price limited access. Gilead Sciences, a US-based pharmaceutical giant, priced it at US $1,000 per pill or US $84,000 for a 12-week treatment course (Thailand’s average annual household income is US $3,200), triggering global criticism and moral questions about drug-pricing mechanisms.

In 2014, Aids Access Foundation and TNP+ filed several patent oppositions against Gilead’s SOF-related patent applications in Thailand, while Thai civil society campaigned vigorously for access to optimal HCV treatment. They demanded that Gilead price SOF affordably and urged the government to make DAA-based treatment available for all through UHC.

© Chalermsak Kittitrakul

Samarn joined demonstrations in front of the Ministry of Public Health. “I knew from the ‘Lopinavir/Ritonavir’ campaign that outrageously expensive medicines should – and can be – affordable.”

In August 2017, Malaysia’s government was preparing to invoke a CL on SOF after unsuccessful pricing negotiations with Gilead, which expanded its voluntary licence (VL) for sofosbuvir and HCV DAAs to include Belarus, Malaysia, Thailand, and Ukraine, allowing them to buy much cheaper generic versions from certain generics companies. Gilead did this only because it feared that Malaysia’s CL would create a domino effect, with other countries following suit.

In January 2018, Thailand added SOF and sofosbuvir/ledipasvir (SOF/LDV) to its National List of Essential Medicines, making the drugs available free of charge through the UHC.

“I followed the situation, continuing to request new treatment from my doctor, who kept denying my request, each time saying: ‘The drug is too expensive, it’s not yet available in the system’. This was despite me informing him about the drug’s updated status.”

Unbelievably, it took two years for Samarn to receive SOF/LDV, a once-daily tablet which he took for three months – without side effects.

“In August 2020, during the first COVID-19 lockdown, the hospital called me to confirm that I had finally been cured of HCV.”

Empowered by community and hope

I met Samarn exactly one week after he found out his HCV was cured. I could feel his joy when he told the story. It had been 13 long years since he was diagnosed with the virus, with countless 100km-drives to the hospital to argue with the doctor, and many years of waiting without progress. But Samarn remained hopeful about curing his HCV because activists were fighting for access to treatment – and they had already succeeded in making expensive ARVs affordable.

I asked whether years of fighting for the rights to get optimal treatment had been very taxing. “Yes,” he said. “But it’s OK. Because I knew what I was doing was useful. Even if not for myself – if I had died before getting the treatment – then it would still benefit others.”

Samarn explained that TNP+ had been vital in supporting HIV/AIDS patients, both practically and emotionally.

“My generation of people living with HIV survived because we went through those times together as a group. Now that we are living with ARVs for the rest of our lives, we need to keep track of [progress in] treatment availability and accessibility. We are part of the group until we die.”

Pangenotypic treatment for HCV patients in Thailand – finally!

In January 2021, (three years after the WHO recommendation), years of campaign and advocacy work by TNP+ and AIDS ACCESS Foundation paid off: sofosbuvir/velpatasvir (SOF/VEL), a pangenotypic HCV treatment, was added into the National List of Essential Medicines.

Pangenotypic treatment enables the UHC system to streamline and simplify HCV treatment by eliminating genotyping and using a simple blood test instead of Fibros can to assess cirrhosis; a specialist is no longer required – internal medicine doctors at local hospitals can treat HCV.

This reduces months, if not years, between diagnosis and treatment and the burden of hidden costs that was a barrier to HCV treatment. Hopefully now everyone who is diagnosed with HCV will receive optimal treatment as soon as possible.

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