New York State Poised to Deny Hepatitis C Treatment to Thousands

FOR IMMEDIATE RELEASE | November 20, 2014

CONTACT: Matt Curtis, 646-234-9062,

People Living with Hepatitis C, Healthcare Providers, and Advocates Demand Medicaid Coverage for New Treatment Medications

NYS Medicaid placing arbitrary restrictions on hepatitis C treatment, denying the cure to thousands of low income New Yorkers.

More than 200,000 New Yorkers are living with chronic hepatitis C, which causes serious liver disease, including cirrhosis and liver cancer. New medications can cure the disease in as little as 8 weeks.

Albany, NY – Today dozens of people living with hepatitis C (HCV), healthcare providers, and advocates rallied outside of a New York State Department of Health meeting where the state discussed imposing onerous restrictions on how newly approved HCV treatments will be covered by Medicaid. More than 200,000 New Yorkers have chronic HCV, which causes serious liver disease including cirrhosis and liver cancer.

At issue is the breathtaking price that Gilead, which produces two new HCV medications, has set for them: $95,000 for a single 12 week course of treatment in the case of its newest medication, Harvoni. Advocates at once criticized the company for profiteering, noting that the cost of production is in the low hundreds of dollars, and New York Medicaid for excluding thousands of sick patients. Advocates are calling on the state to press negotiations with the pharmaceutical industry to reduce prices while making it easier for patients to benefit from the new drugs.

“Now that we can cure Hepatitis C, we need to make treatment access universal,” said Charles King, president of Housing Works and co-chair of a task force established by the governor to work toward ending the AIDS epidemic. “Anything less than that is both immoral and counter to the basic principles of sound public health policy.”

Liam Gibson, a resident of Suffolk County who provides hepatitis services at NY Harm Reduction Educators and is a member of the activist group VOCAL-NY, has been living with HCV for nearly 20 years. But he was recently denied treatment by Medicaid because his liver disease is not advanced enough. “I have a swollen liver, fibrosis, exhaustion and weakness, and mental effects,” said Mr. Gibson. “Just because Gilead is putting their profits before my life does not mean the state of New York can pretend I don’t exist. I need treatment now, not when I’m on death’s door.”

About 50% of HCV infections statewide are among people living Upstate and on Long Island. By the state’s own estimate, coverage criteria could exclude up to 60% of Medicaid patients with the disease – or nearly 40,000 people.

Hepatitis C is increasingly an issue that unites elected officials from both sides of the political aisle. Senator Phil Boyle (R-Bay Shore) stated that “as we seek treatment for the thousands of New Yorkers suffering from Hepatitis C,  we must ensure that effective medications are not put out of reach for those who need them,” said Senator Boyle.  “The entire purpose of the research and development of new drugs is to make all of those who are afflicted well, not just a select few.  As with any disease, we need to ensure that all treatments and medications are made available to as many as possible, as soon as possible.”

“New York’s pathbreaking commitment to ending the AIDS epidemic shows just how far we’ve come,” said Senator Gustavo Rivera (D-Bronx). “The same approach can control the hepatitis C epidemic, a life threatening – and curable – disease that affects communities across the state. The first step should be to simply ensure all doctors have access to the medication they need to adequately treat their patients.”

Tracy Swan of the Treatment Action Group made an analogy to healthcare that many have come to take for granted: “We don’t make HIV-positive people in New York wait for treatment until they have AIDS, we don’t tell people who eat meat that they can’t be treated for heart disease, and so we shouldn’t withhold HCV treatment from people who need it. New York should not backslide into unethical cost-cutting.”

“It is clear that Gilead’s prices for Sovaldi and Harvoni are excessive and have no relation to the cost of producing these drugs,” said Luis Santiago of ACT UP New York. “However, the decision of whom to treat must be based on science. Cost and budgetary considerations must be dealt with through negotiations between producers and payers. In no case should they be used to deny access to patients for whom the treatment is indicated.”

Medical providers are already seeing the effects of treatment restrictions. “I have applied for Medicaid and Medicare coverage for various treatments including Simeprevir, Sofosbuvir and Harvoni,” said Angie Woody, a hepatitis C patient navigator in New York City. “It is clear to me that the cost of these medications leaves patients beholden to their insurers for treatment and that doctors and insurers have conflicting criteria for ‘necessary medical care.’ In just the last month, we have had four patients denied treatment due to their lack of advanced liver disease.”

Advocates also point to how treatment access is a necessary precondition to ending the epidemic. “With no restrictions to HCV treatment and a commitment from NYS officials and the governor we can eradicate Hepatitis C in New York State,” said Jules Levin of the National AIDS Treatment Advocacy Project. “This approach will provide access to a cure, save lives, prevent transmission, and ultimately avoid billions of dollars in medical costs for the state. Considering all the other costs associated with HCV disease, it is clearly cost effective.”

Pointing to the global impact of HCV drug pricing, Michael Tikili of Health GAP said that “placing these particular restrictions on who can access Harvoni is a crime against the most marginalized of our communities and will only allow the HCV epidemic to spread further. It is unacceptable that millions of poor people living with hepatitis C around the world are being priced out of treatment because of Gilead’s greed. We will fight for access in our own backyard here in New York State, and around the world, wherever Gilead’s price gouging is leaving people to die without access to a lifesaving cure.”

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