27 May 2021
In our first ‘View from the board’ article INHSU board member Tracy Swan explains how the treatment of hepatitis C in people who use drugs has evolved in the past two decades, discusses how research played a core part in making Direct-Acting Antiviral (DAAs) accessible and explains that – despite these advances – there is still a long way to go.
For thirty years, I have worked to advance social justice through the right to health – although I never planned it that way. It began in 1991 when I began doing street outreach and HIV testing at a walk-in clinic for gay, lesbian, bisexual and transgender youth; most were homeless, involved in sex work and were using drugs. At the time, we did not have much to offer for prevention – or treatment. I was frustrated by these limitations and decided to learn about HIV research, although it seemed unlikely that I would flourish at anything related to science. I’d had very strange teachers, including one that had us dissect frogs and fetal pigs once a week for months. But it turned out that I loved learning about research and how it could generate evidence to change policies – and improve access to and quality of prevention, care and treatment for people living with HIV.
In 1998, I got a new job with an absurd title – Substance Abuse Coordinator. I was providing HIV education and prevention, counselling and testing, at inpatient and day drug treatment centres, HIV clinics, homeless shelters, methadone clinics and a syringe exchange. During my second week, someone said “we’ve had HIV education for years, we already know about it. But all of us have hepatitis C, what can you tell us about it?” My reply was “…nothing today but whatever I can find out by the end of the week.”
I quickly learned some key facts:
- Nearly everyone I saw at drug treatment programs and methadone clinics had hepatitis C, but nobody was doing anything about it
- Most doctors were reluctant, or unwilling, to offer hepatitis C treatment to the people I was working with, because they had recently used or were still using drugs
- The treatment for hepatitis C was primitive. It involved a year of weekly injections and daily pills which had severe side effects, and did not work for everyone – especially not for people who needed it the most, including people who had HIV and hepatitis C
- Better drugs were supposed to be in development
Giving people who use drugs the right to choose hepatitis C treatment
As I learned more, the irony struck me – I was fighting for access to treatment that many people actually wouldn’t want. But they deserved the right to turn it down, instead of having it withheld for no good reason. I had no idea what would be coming in the future, or that the standard of care would be transformed to just eight to 12 weeks of once-daily oral treatment that cured nearly everyone with barely any side effects. But it took about fifteen years to get there.
My background as an HIV activist enabled me to discuss hepatitis C drug development with pharmaceutical companies, which was often frustrating. As hepatitis C clinical trials began to offer better treatment, more people sought to get access to them, including people who use drugs. Yet they were barred from them.
With other activists, we pushed for this to end. We were told that people who use drugs were too ‘unreliable’ and could not be counted on to take their study drugs. We countered, explaining that people who use drugs have a better understanding of adherence than anyone else, and we asked what criteria was used to determine reliability. Apparently, there was none. We told them that their strategy was not evidence-based, that it was discriminatory, and that it would limit the market for their products, since doctors would continue to insist on evidence from clinical trials to support treating people who use drugs. Similar arguments continued, with little progress.
Fortunately, a handful of pioneering researchers were doing hepatitis C treatment trials in people who use drugs. Their collaborations on, and track records of successful interferon-based trials, eventually persuaded pharmaceutical companies to support oral, direct-acting antiviral (DAAs) trials in people who were using drugs. These trials demonstrated proof-of-concept that people who use drugs could be safely and effectively treated. It was these same people who started INHSU.
The role of stigma and discrimination against people who use drugs
Unfortunately, DAAs were priced out of reach, and stigma and discrimination created additional barriers to HCV treatment for people who use drugs. Activists continued the fight for access to DAAs for people who use drugs, by working to remove non-evidence-based abstinence requirements and by lowering DAA prices, both of which were used as a rationale to justify withholding HCV treatment. Researchers provided key evidence to support this work, including that:
- Cure rates from DAA treatment were similar, regardless of drug use
- Curing people from hepatitis C lowered their risk of progressing to liver cirrhosis, liver cancer and liver failure, as well as non-liver-related illness and death from heart attacks, strokes and type 2 diabetes – all of which would reduce suffering and healthcare expenses
- DAAs simplified and streamlined treatment, eliminating the need for invasive, expensive pre-treatment testing, reducing on-treatment monitoring, and enabling non-specialist providers to successfully deliver HCV treatment
- Scaling up harm reduction coverage and access, along with the offer of HCV treatment, could dramatically lower HCV transmission among people who use drugs
- Generic DAAs could be profitably mass-produced at low prices, making it affordable for countries to scale up HCV treatment
But even this evidence was not sufficient – after DAA prices dropped significantly in many countries, the full extent of the discrimination against people who use drugs was revealed. Unfortunately, in many countries, access to hepatitis C treatment, especially for people use drugs, remains limited or non-existent.
We still have a lot of work to do
Fighting for HCV treatment access is one step towards upholding the human rights – including the right to health – among people who use drugs. But being cured of HCV, while a very good thing, does not remove the legal, social, economic and structural barriers faced by people who use drugs.
A comprehensive strategy is called for, including – but not limited to – decriminalizing drug use and possession for personal use; ending arbitrary detention for non-violent drug offenses and compulsory, coercive drug treatment; expanding low-threshold harm reduction services; ensuring a safe drug supply and including people who use drugs in the design, implementation and oversight of policies, programs and services that have an impact on their health, well-being and survival.
For more information, see In the time of COVID-19: Civil Society Statement on COVID-19 and People who use Drugs.