Reflections of a HIV advocate: ‘Why I’ll keep showing up to protest Gilead’s pricing on Hepatitis C drugs’

November 11, 2014

 

Globally an estimated 185 million people have Hepatitis C (HCV). Each year, nearly 500,000 die of HCV-related complications. But Hepatitis C is curable with the right treatment. However life-saving treatment, sofosbuvir (Sovaldi) and lepidasvir can only be just that if it is affordable, accessible and available to the millions of people who need it. Gilead has priced sofosbuvir at US$84,000 for a 12-week course of treatment. Gilead controls generic competition, and though it recently announced a voluntary licensing agreement with Indian drug manufacturers, patents and licensing regulations continue to block access for those in high –income and middle income countries, where 46% of those needing treatment live. This excludes 73 million people from access to affordable life-saving treatment. Hep C activists are organizing, agitating and taking action to demand access to new life-saving hepatitis C virus meds, from community based organisations in India filing patent oppositions, to global advocates forming a Hep C World Community Advisory Board to develop global strategies.

 

Loon Gangte, the International Treatment Preparedness Coalition (ITPC) South Asia Regional Coordinator and other local activists staged a direct action at Gilead’s recent press conference in New Delhi. Here are his reflections.

 

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Photo Credit: Shailly Gupta, MSF

 

We knew it wasn’t going to be easy to protest at the recent Gilead Press Conference in New Delhi, held on 15th September 2014. The press conference was in a posh, five-star hotel. So we thought we’d do a silent protest, to get our message across to Gilead, Indian pharmaceutical companies and the local press that Gilead’s refusal to allow generic versions of the drug Solvadi (which can cure Hepatitis C) in some countries is unacceptable.

 

We were a group of local activists, from across organizations in India, numbering about 10 people. When we arrived at the hotel, we found the press conference room and set-up the protest at the entrance. We pulled out a large banner, and sat down at the main entrance gate. We did not shout or make noise – we just stood there in our HIV Positive t-shirts with our posters. After about 30 minutes, the security men said, ‘that’s enough’ and told us to take down our banner and leave. We politely refused. Suddenly, I saw two of my colleagues from the Delhi Network of Positive People (DNP+) being manhandled by security as they attempted to drag them out of the room.  

I didn’t think this was right, so I ran towards them and wrapped my body around them, locking our hands and feet together and forming a kind of human chain. Now the security men tried to pull us out of the room one by one, but we were too strong to break apart. They called for more men, and gradually because they greatly outnumbered us started lifting us off the floor. I had been silent, but now I began to yell, ‘Why are you doing this? We are here fighting for our lives.’

As I was yelling, about five men descended upon me and yanked me out of the room by my hair. They threw me on the ground outside of the exit gate. I was stunned, and angry. I found out later that someone from the press conference barred journalists from taking photographs or shooting videos of the protestors outside the venue.

Looking back, despite the physical harm, I’m still proud that we pulled off the protest. At the Delhi Network of Positive People (DNP+) and ITPC South Asia, we don’t use protests as the first option for conveying our message. But if repeated letters and meetings have no effect – as is the result with Gilead, who refuses to engage with us – then we have to take our campaign public. We show up for a protest because we have no other options.

But despite Gilead’s attempts to cover up our protests, we are not going anywhere. The HIV treatment movement cannot ignore Hepatitis C; we have seen more and more people diagnosed with the disease among our friends. We have watched them suffer or die because they cannot afford the cost of treatment. Now that there is a cure for Hepatitis C on the market, we have even more incentive to fight to access it – otherwise all of our hard work and investment in HIV treatment will be in vain.

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Activists demand affordable access to new, life-saving hepatitis C virus medications

March 25, 2014

by Karyn Kaplan, Director, International Hepatitis/HIV Policy & Advocacy, Treatment Action Group (TAG), New York

“If the prices (of new HCV treatments) were to be unaffordable once more in history, it would be one more scandal around inequity of access to health care.”

— Michel Kazatchkine, the United Nations Secretary General’s Special Envoy on HIV/AIDS in Eastern Europe and Central Asia
On 22-25 February 2014, treatment advocates from 22 countries came together in Bangkok, Thailand, for the “1st Hepatitis C Virus (HCV) World Community Advisory Board (CAB)” meeting to strategize for increased access to hepatitis C virus (HCV) diagnostics and treatment. Thirty-eight activists met with six originator pharmaceutical companies that produce pegylated interferon (PEG-IFN), the current standard of care (SOC) for treating HCV in most of the world, and/or HCV direct-acting antivirals (DAAs), which constitute the new SOC in the US and Western Europe. New DAAs are safer, less toxic, and more powerful, and are demonstrating cure rates of up to 100% in clinical trials. Pegylated interferon, on the other hand, on average cured only 50% of people with HCV.

Globally, about 185 million people are infected with HCV, or six times the number of people with HIV/AIDS, and 350,000 people die each year of HCV-related complications. Annually, three to four million are newly infected. Yet, only a small fraction of people with HCV is aware of their status. Due to the high price of PEG-IFN (up to US $20,000, even in lower middle-income countries (LMICs)), many countries have been unable to prioritize HCV testing, treatment and prevention programs, even where national prevalence is high.

Egypt, with the world’s highest HCV prevalence (15%), recently gained attention for its successful negotiation with PEG-IFN producers, Roche and Merck, for a price of US $2,000 per treatment course, a ten-fold price reduction. Egypt was able to achieve this price in part because a local company could produce a similar version of PEG-IFN cheaply. Roche and Merck wanted to maintain large shares of the Egyptian market, so they brought down their price.

“We want these new and coming HCV drugs as soon as people in rich countries can access them. Poor people’s lives count too, but obviously not in the eyes of these greedy pharmaceutical companies who care only about profit. None of the six companies we met with offered a plan that would help LMICs access affordable treatment,” said Jirasak Sripramong, an HCV educator and advocate with the Thai AIDS Treatment Action Group (TTAG) and participant at the HCV World CAB.

Eighty-five percent of people with HCV live in LMICs, but at current prices, there is no hope of treatment access for them –Gilead’s recently-approved sofosbuvir, which is expected to replace PEG-IFN as the new backbone of HCV treatment, for example, costs US $84,000 per treatment course in the U.S. and needs to be used in combination with other drugs. “Most people cannot afford HCV treatment—nor can their governments,” explains Paata Sabelashvili of the Georgian Harm Reduction Network. “My government, like others in the Eastern European region, is launching a national treatment program, but astronomically high prices will limit it. How can governments and donors effectively address HCV if Pharma refuses to drop drug prices?”

“All six companies claimed to have learned the lessons of the HIV/AIDS epidemic, but in fact refused to commit to price reductions or promote access to generic competition that will allow affordable access in LMICs. Abbvie, BMS, Gilead, Janssen, Roche, and Merck are holding people with HCV hostage to their corporate greed, and many will die waiting for treatment unless we fight back.” said Karyn Kaplan, an organizer of the meeting.

HepC activists continue to engage in numerous advocacy activities to increase access to affordable HCV treatment, including community education and mobilization, working with governments and pharmaceutical companies to negotiate lower drug prices, and lodging patent oppositions in courts to challenge the validity of new HCV drug patents where relevant (as in the recent I-MAK pre-grant patent opposition against sofosbuvir, in India – ruling still pending).

What can the general public do to support HepC activists?
The general public can participate in campaigns, such as our upcoming global advocacy campaign to get originator companies to bring down the price of new HCV DAAs, through signing onto petitions or joining solidarity actions in their cities. The price reduction campaigns are based on the right to health and recent studies that have shown true production costs of these new drugs are estimated at only a couple of hundred dollars per drug per treatment cost. We are questioning the methodology of how the companies decide on their final market price and their companies’ lack of a moral and ethical commitment to equitable access balanced with fair profit.
For further updates check out the Global HCV campaign website: http://www.hepcoalition.org

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