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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HIV Advocates ask: Is Sexuality a Crime?

October 14, 2014

 

The International Treatment Preparedness Coalition (ITPC)’s efforts to ensure all people living with HIV access the treatment they need include focusing on key populations. ITPC is an advocacy partner in Bridging the Gaps – Health and Rights of Key Populations (hivgaps.org)– a program to achieve universal access to HIV/STI prevention, treatment care and support for sex workers, LGBT people and people who use drugs.

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Key populations often face criminalization, discrimination, stigma and other human rights violations that affect their health. Through Bridging the Gaps, ITPC has supported community-based organizations in 14 countries to advance treatment access for key populations. One of these countries is Pakistan, where HIV primarily affects key populations. Pakistan had an estimated 98,000 people living with HIV by the end of 2009, but only 5,256 PLHIV had registered in the country’s 17 ART centers by the end of 2011.

Akber is a health and human rights activist in Karachi who works with ITPC through Bridging the Gaps, and he recently shared his thoughts on LBGT issues in his country (as originally published in HIV Gaps – http://www.hivgaps.org/blog/sexuality-crime/

When I heard about the signing of the anti-gay law in Uganda, I felt like they were hanging my brothers without reason. This is governance without leadership; this is dictatorship. As if they were saying “leave it or die”. Is sexuality a crime? And what happens when homosexuals have a sexually transmitted infection and want to get medicine to lead a healthy life? We are all the same, made of flesh and blood; we live on earth, eat food, drink water, and breathe air.

In the anti-gay law of Uganda, homosexual behaviour is compared to animal sex. How can a government decide to have such a law against homosexuality? For me, sexual rights are human rights. So, in short, we should ask the government of Uganda to have physical check-ups of animals, to identify homosexuality (haha). This is insane!

In my country, Pakistan, LGBT people also face disapproval and criminalisation. Article 377 of the Pakistan Penal Code states: “Whoever voluntarily has carnal intercourse against the order of nature with any man, woman or animal, shall be punished with imprisonment […] and shall also be liable to fine”. This article affects the health and human rights of LGBT directly and indirectly.

Just imagine how an unmarried gay man living with HIV, or another sexually transmitted infection, feels when he wants to visit a health clinic. He might face shame, denial, self-labelling, stigma, and discrimination. This can result in lower self-esteem – leading to mental health issues, feelings of revenge, and even suicide. Who will take responsibility for his death: the government, society, you, me?

In my country, Pakistan, LGBT people also face disapproval and criminalisation

My organisation PMHS is playing a vital role in changing the law. We network in communities, and implement advocacy activities within society and among government officials. PMHS also has a project that gives the LGBT community easy access to health service delivery points, without discrimination. Our doctor and psychologist are trained to treat sexual transmitted infections and to offer voluntary counselling and testing, keeping in mind confidentiality in accordance with organisational and international criteria. These services are free.

However, although Pakistan is an Islamic state, the government accepts sexual minorities. The government is not providing services themselves, but they at least give a chance to non-profit organisations to do so. Men who have sex with men can get HIV treatment and voluntary counselling and testing through non-governmental and community-led organisations. And recently the government gave jobs to transgenders, which is important because transgender people often face discrimination in the workplace. A restaurant in Lahore, ‘Andaz’, has also given jobs to transgenders, which was an eye-opening experience for me because it shows everyone has a role to play. This is what we call empowering the community

 

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From Miss to Hit: How ITPC keeps its eye on the target of ending AIDS

February 17, 2014

The International Treatment Preparedness Coalition (ITPC) provides community driven grant making to organizations working on HIV/AIDS issues around the world.

ITPC’s HIV Collaborative Fund supports community based advocacy and education, empowering civil society to make funding decisions that work towards ‘health for all’ amongst some of the most marginalized populations. This short video chronicles the work of ITPC supported projects in East, West and Central Africa, where ITPC funding is provided to community-based organizations such as Action Sante Plus and Amepouh in Abidjan, Cote d’Ivoire and Maritime Life Precious Foundation in Takoradi, Ghana, Secours Avicole et VIH/SIDA (SECAV) in Kinshasa, Democratic Republic of Congo and Uganda Young Positives in Kampala, Uganda.

In East West and Central Africa, only 40% of those needing HIV treatment are receiving it. This means that for many, a HIV diagnosis equals death due to financial and socio-cultural barriers, weak and inadequate health care systems and widespread stigma and discrimination. In a time when leaders on the global stage trumpet the possibility of the end of AIDS, this statistic shows us the stark reality.  We have the scientific and medical know how to end AIDS, but this cannot be realized whilst universal treatment remains a distant goal. At risk populations, including youth, women, men who have sex with men (MSM), commercial sex workers (CSWs), and People who use Drugs (PUDs) are denied access and information to HIV prevention and treatment services due to legal and socio-cultural barriers which force them underground and isolated from health care services.

The ITPC Small Grant Making program is one of the largest community-driven funding mechanisms for HIV. In East, West and Central Africa more than US$5 million in small grants has been awarded to 250 community organizations providing HIV treatment access, literacy and advocacy. The video provides a snapshot of peer-based prevention and treatment programs, where People Living with HIV (PLHIV) and affected communities are given advice and support on leading full, productive, enriching lives and empowered to passing on their knowledge and experiences.

Community based organizations are best suited to serve the needs of their people, and address the barriers that impede access to universal treatment and HIV prevention services. For the ‘invisible populations’ that fall through the cracks, these organizations are critical for survival. It is only by investing in communities that we can begin to envision the end of AIDS.

Sylvere B. Bukiki ITPC Regional Director, West Africa says that by using small grants, big things are able to be accomplished. Until we come to a time when the Alma Mata declaration of ‘health for all’ is enshrined in national law and effective implementation mechanisms are enforced, the all-important work of community-based organizations is critical to saving and improving lives.

To keep up-to-date with the work of ITPC network members, join their mailing list at http://www.itpcglobal.org/it or follow them on Facebook or Twitter.

 

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