In our November blog, Karyn Kaplan tells the story of how one hepatitis C infection led to a national advocacy movement in Thailand.
“So, how’s your hepatitis C?”
I will never forget this interaction, in 2004, between my partner, Paisan, a HIV-positive activist from Bangkok, and a doctor he saw at the Tom Waddell Health Center in San Francisco. Paisan had fallen sick at a meeting we were attending, and a colleague had made him an appointment to have some tests.
“You aren’t aware you have hepatitis C?”
Paisan is a leading HIV activist in Thailand. Diagnosed with HIV in the early 1990s, Paisan had a very slow-progressing form of the virus, and at the time still did not need treatment. We first met in 2001 at the UN General Assembly Special Session on HIV/AIDS in New York. Soon after, we co-founded Thai AIDS Treatment Action Group (TTAG). Before that, Paisan was founding chairman of the Thai Network of People Living with HIV/AIDS.
How was it possible, I wondered, that one of Thailand’s leading HIV activists, with a history of injection drug use, had never heard of the hepatitis C virus? That blood-borne virus is extremely common in people who inject drugs, particularly where there is inadequate access to clean injecting equipment. Thailand did not support harm reduction or evidence-based HIV prevention for people who inject drugs, and they were considered criminals and neglected by the healthcare system. Paisan, as an injector, was a victim of those discriminatory policies. He believed he contracted HIV – and now, he assumed, hepatitis C– while in prison in northern Thailand.
Thailand’s HIV epidemic was legendary, peaking in 1991 with >140,000 annual new infections. For years, Thailand had the highest HIV prevalence in Asia. Among people who inject drugs, an estimated 50% had been HIV-infected. Hepatitis C was even more prevalent than HIV among people who inject drugs with an estimated 90% of them being infected. Yet, just like Paisan, as we later discovered, almost none of the people who inject drugs with whom we worked had ever heard of it!
Why would an HIV doctor withhold such important information about a positive hepatitis C diagnosis from his or her patient?
In Thailand, some doctors told us, that they chose not to inform their patients of their hepatitis C. This was largely because it was 1) hard to treat, due to the treatment’s side-effects, 2) expensive (treatment with pegylated interferon and ribavirin cost US$20,000 in Thailand at that time), and 3) it required expensive diagnostics, monitoring, treatment and side-effect management, almost none of which was covered under the government healthcare scheme.
I guessed Paisan’s doctor thought the HIV diagnosis was enough for him to deal with. Possibly, he didn’t think Paisan would live long enough to see his hepatitis C develop into a significant health concern (symptoms can take decades to develop). This was not an irrational belief. At the time of Paisan’s HIV diagnosis, there was no antiretroviral treatment available in Thailand and the average life span of a person with HIV was seven years after diagnosis.
Though Paisan was eventually treated and cured of his hepatitis C through a donation from a physician friend in the US, his relationship with the virus did not end there. He thought about all his friends who inject drugs and living with HIV/AIDS in Thailand who, like him, had little to no hepatitis C knowledge, despite their high risk. Paisan decided to make hepatitis C education and advocacy a core component of TTAG’s work moving forward. It made sense to integrate hepatitis C education into its ongoing harm reduction service provision and advocacy, which ranged from running a harm reduction drop-in center and needle and syringe program to conducting policy work to decriminalize people who use drugs.
Ultimately, TTAG spearheaded a national-level hepatitis C advocacy movement that effectively convinced the Thai government to prioritize it by:
- Putting pegylated interferon medication on the national essential medicines list (to improve its affordability and access);
- Updating national HIV guidelines to improve access to testing and treatment for people living with HIV/AIDS co-infected with hepatitis C, and,
- Covering the cost of hepatitis C treatment under the government’s universal healthcare scheme.
Globally, 185 million people have been infected with hepatitis C virus; 85% of them live in low and middle income countries. Each year, hepatitis C kills 500,000 people and 3-4 million are newly infected. An estimated 5 million are co-infected with HIV and hepatitis C. Most new hepatitis C infections occur among people who inject drugs. The good news is that there are highly-effective new treatments called direct-acting antivirals that radically improve the chances of getting cured, even for people considered “harder to treat” due to advanced liver disease, HIV-coinfection, or their hepatitis C genotype.
Yet, the cost of these treatments, which cured up to 90% of people in clinical trials, is exorbitant. Gilead’s sofosbuvir (Sovaldi), now considered the backbone of the new hepatitis C standard of care, costs US $84,000 in the United States, or US$1,000 per pill. Experts have shown that sofosbuvir can be mass-produced generically for about US $101 for a 12-week course, if patents were not a barrier.
How direct-acting antivirals will be priced in low and middle income countries remains to be seen. Yet, if Gilead’s recent licensing agreement with seven Indian generic producers is an indication, access for most of the world’s people with hepatitis C will be severely limited. Gilead’s license (to allow access to affordable generic versions of their hepatitis C drugs) covers countries with only 54% of people with this infection globally. It excludes Thailand, though it is one of the top 20 countries with the world’s highest hepatitis C prevalence. It excludes China, where nearly 30 million of the world’s people with hepatitis C live.
Today, Paisan and I are part of a dynamic global coalition of people with hepatitis C and their allies who are fighting for equitable access to information, affordable testing and treatment, and supportive, evidence-based policies at the national and international level. With numerous direct-acting antivirals on the market and a cure within reach, we are more motivated than ever to help grow this movement and fight for affordable generic treatments for all who need it.
Without treatment, Paisan might not be alive today. And, without a treatment donation, he would never have been treated. While on an individual level, it was invaluable, for majority of the world’s 185 million people with hepatitis C, donations are not the solution. Empowerment of marginalized communities and access to affordable generics are!