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Hepatitis C activism and advocacy 2014-2016

ACT UP / New York

 Monday, May 2, 2016


* Summer 2014: Participated in 3 actions lead (or co-lead) by VOCAL, protesting Gilead pricing of Hep C drugs. These actions were held in three different Manhattan hotels. Members of ACT UP directly addressed leaders of the American Association for the Study of Liver Disease (AASLD), which at the time had an ambiguous position regarding the restrictions on the clinical criteria required to start treatment. (Later on, AASLD clarified its position that everyone with chronic hep C infection must be treated.)

* August 2014: Sent a letter to the Committee on Finance of the US Senate regarding their bipartisan investigation on Gilead’s pricing of Sovaldi. ACT UP demanded a 90% reduction on the price of Sovaldi, and, in the event that Gilead refused to grant it, that the government break the monopoly on sofosbuvir and make the drug available at a reasonable price. (In early 2016 the results of the investigation were announced. It concluded that “Gilead pursued a calculated scheme for pricing and marketing its hepatitis C drug based on one primary goal, maximizing revenue, regardless of the human consequences”.)

* Fall 2014: The New York State Hepatitis C Coalition is formed. Founding Members include ACT UP, COPE (Coalition on Positive Health Empowerment), Harm Reduction Coalition, HCMSG (Hepatitis C Mentor and Support Group), Housing Works, LCOA (Latino Commission on AIDS), NATAP, TAG, and VOCAL. The Mission Statement:

The New York State Hepatitis C Coalition is a diverse group of community, activist and advocacy organizations, and individuals. We fight for universal access to high quality hepatitis C virus (HCV) care, treatment and prevention. We take action to ensure that all people living with HCV in New York State are tested, diagnosed, and immediately connected to appropriate medical care and support services. We demand unrestricted access to affordable curative treatments. Our mission is to end the hepatitis C epidemic and eradicate HCV from New York State.”

* 2014-2016: Engaged in numerous meetings with a diverse set of stakeholders in order to advance the interests of people with hepatitis C in New York State. The following are the five (5) most important and consequential:

   1) Nov 2014, Feb 2015, others: Attended meetings of the Drug Utilization Review Board (DURB) and made public comments demanding the immediate dropping of any un-medical restrictions to treatment of Medicaid hep C patients. (Recently, Medicaid dropped the disease severity restriction, but it left in place the restriction based on concomitant drug/alcohol use).

   2) October 2014: Met with Gilead Managed Markets/Government Affairs/Public Affairs VPs. Reiterated our opposition to

Stop Gilead Price Gouging on Sovaldi/Sosfosbuvir


NEW YORK CITY – AUGUST 13, 2014 – Today ACT UP New York publicly challenged the U.S. Senate Finance Committee to negotiate with Gilead to reduce Sovaldi’s $1000 per pill price by 90% or more, a reduction that would save billions of dollars in U.S. health care spending, and could save hundreds of thousands more American lives, setting the groundwork for national and global eradication of hepatitis C.

Even before Gilead reported making $5.8 billion in sales on Sovaldi in just the first six months of 2014, activists, health policy experts and government officials had sharpened their criticism of the pharmaceutical company, which had previously had a relatively good reputation in the HIV community. The process by which Gilead arrived at a price for its hepatitis C drug is controversial, particularly because Gilead acquired the drug through the $11 billion purchase of the company Pharmasset, which had priced the drug significantly lower.