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

Gilead’s pricing of their HCV medications. Gilead willing to provide additional discounts based on an increased volume of patients.

    3) May 2015: Had a conference call with OHIP senior staff. The Office of Health Insurance Plans (OHIP) of New York State’s Department of Health (DOH) is responsible for negotiating drug prices with pharmaceutical companies, and has authority as far as what is added to the Medicaid fee-for-service formulary. They basically told us they were waiting for competition to increase and push prices further down. They specifically mentioned the awaited approval of a new treatment from Merck in early 2016, which they expected could give them the opportunity for a “better deal”. (Gilead reported on April 28, 2016, that the entry of Merck’s product into the market did make them renegotiate some agreements and increase the rebates.)

  4) August 2015: Met with Lisa Landau, head of the Health Care Bureau, New York State Office of the Attorney General. We asked her to brief the Attorney General on the restrictions to access in New York State. Recently, we were informed that this meeting “started the ball rolling”, and it contributed to the lawsuit by the AG, which ended with the agreement announced last week by the AG himself, Eric Schneiderman, in which 7 insurance companies agreed to remove restrictions on access to Hep C medications.

 5) March 2016: Met with AIDS Institute and DOHMH on eliminating HCV in New York State. Agreed that we need to develop a very strong document that very clearly highlights what it is we want to do, and what is needed to achieve it. Make sure there really is a concrete plan. The next step are planning sessions and a summit of stakeholders to finalize the plan (See Plans section below).

* January 2016: Co-sponsored and participated in a Town Hall meeting at the LGBT Center on Ending the Hep C Epidemic in New York State.

 * February 2016: Completed and presented the New York State Hepatitis C Coalition 2016 Budget and Legislative Platform at the hepatitis C Lobbying Day in Albany. The asks included 6 million for HCV programs, plus legislation to decriminalize syringe possession, authorize pharmacists to administer HCV rapid screening tests, and establish HCV prevention programs in every state prison.


n the near future, we will continue pressure on:  1) Gilead and other companies with HCV products to reduce the price of their drugs; 2) NY State Medicaid office to eliminate remaining restrictions; and 3) the Medicaid MCOs to follow the guidelines approved for fee-for-service and remove all restrictions.

As important, as part of the NYS Hepatitis C Coalition, we will be holding planning sessions for a summit later this year of hepatitis C advocates from across New York State. The goal of both the initial planning sessions and the wider summit is to figure out what the hepatitis C-affected communities need to do, with respect to state and local governments and health departments, drug companies, and third party payers, in order to end the hepatitis C epidemic in New York State.