By Annette Gaudino
Governor Andrew Cuomo’s March 16 announcement committing New York State (NYS) to ending the hepatitis C virus (HCV) epidemic was the culmination of years of advocacy on a path that paralleled—and is built upon—the state’s nation leading efforts to end the HIV epidemic.
The HCV burden in NYS, and in the U.S., is high and is growing, with the concurrent opioid epidemic driving a 290% increase in the number of new cases between 2010 and 2015. In NYS this translates into 14,745 new HCV infections in 2016, as compared with 2,881 new HIV cases in the same year.
Prior to these recent spikes, the majority of people living with chronic HCV infection were “baby boomers,” a fact recognized in the January 1, 2014 implementation of a state law requiring providers to offer an HCV antibody screening test to all patients born between 1945 and 1965. Given the eye- popping price of breakthrough direct-acting antiviral (DAA) cures, it should be no surprise that New York State’s remains the only HCV screening law in the nation.
That same year, NYS Medicaid Director Jason Helgerson secured significant supplemental rebates for the most commonly used HIV antiretrovirals, creating the conditions for Governor Cuomo’s launch of the End the Epidemic initiative. This bold action is a testament to the political power of the HIV movement and came a mere two years after Charles King and Mark Harrington brainstormed a call to end the epidemic after their arrest at the White House during the 2012 International AIDS Conference.
In contrast, 2014 saw the American Association for the Study of Liver Diseases (AASLD) release clinical treatment guidelines recommending that only patients with advanced cirrhosis receive DAAs. Cost-based rationing of treatment for a stigmatized infectious disease? Activists had seen this movie before, and sprang into action:
October 2014: ACT UP/NY and VOCAL NY greeted participants at an AASLD/EASL special conference demanding changes to their restrictive treatment guidelines, which were also being used by Medicaid programs and commercial insurers to deny DAAs to people with past or current substance use. They confront Gilead Executive VP Gregg Alton, calling out his admission on drug pricing: “We didn’t base [the price] on our R&D costs, and we didn’t base it on our acquisition costs. We spoke to all the payers many times…so how can they be surprised?”
Late 2014: The NY State Hepatitis C Coalition founded by TAG, ACT UP/NY, VOCAL-NY, and National AIDS Treatment Advocacy Project, and quickly grew to include Housing Works, Harm Reduction Coalition, Hepatitis C Mentor and Support Group, Coalition on Positive Empowerment, BOOM! Health, and other community-based organizations. The Coalition successfully rolled back NY State Medicaid Drug Utilization Review Board restrictions over the course of a year-long campaign.
August 2015: Coalition members met with Lisa Landau, the Health Care Bureau chief for NY State Attorney General Eric Schneiderman, catalyzing the office’s lawsuit against seven private insurance companies, ultimately resulting in the removal of restrictions on DAA access.
March 2016: Coalition members met with State and New York City Department of Health officials to discuss a state-wide summit on eliminating HCV as a public health threat. Inspired by and loosely following the template created by the End the Epidemic Task Force, Working Groups were formed and met throughout the summer to draft initial recommendations across five overlapping areas: prevention; testing and linkage; care and treatment access; data, surveillance, and metrics; and social determinants of health.
November 28, 2016: The NY State Hepatitis C Elimination Summit Work Groups Meeting brought together 94 stakeholders to discuss draft recommendations in context and began developing consensus on recommendations to be presented at the statewide Summit.
February 7, 2017: The NY State Hepatitis C Elimination Summit took place in Albany, the first jurisdiction to host such a meeting. Over 250 stakeholders attended the presentation of initial recommendations and a community consensus statement, and called on NY Governor Cuomo to appoint a state-wide Task Force to implement a blueprint to end the HCV epidemic.
December 2017: Members of the Summit Steering Committee, including TAG, Housing Works, Harm Reduction Coalition, VOCAL NY, Hepatitis C Mentor and Support Group, and Coalition on Positive Empowerment, launched the NY State HCV Elimination Campaign, calling on Gilead, AbbVie, and Merck to offer volume-based discounts for DAAs to Medicaid and the Department of Corrections.
January 2018: The HCV Elimination Campaign called on Governor Cuomo to publicly commit to volume-based discounts and other measures to dramatically increase the number of people treated for HCV. Representatives from Merck revealed that the company made an initial offer of volume-based discounts to Medicaid and the Department of Corrections in fall of 2017.
February 5, 2018: Three hundred people participated in HCV Advocacy Day in Albany, highlighting the State’s failure to commit to HCV elimination. Citing reported declines in the number of Medicaid recipients treated for HCV between 2015 and 2017, they demanded $10.8M to fully fund HCV prevention, linkage to care, surveillance, and programs in jails and prisons.
February 12, 2018: Activists testified at the Joint Budget Hearing on Health and Medicaid in support of their budget ask and legislative platform. In response to ranking Health Committee Member Senator Gustavo Rivera, Director Helgerson announced a potential path to scaling up treatment, stating “We already have statutory authority to look at volume-based discounts [for hepatitis C treatment]. [W]e’re going to…look at possibly utilizing that statutory language to see if we can’t get ourselves an even lower price, which makes it even easier for us to actively promote the treatment.”
March 16, 2018: New York State becomes the first U.S. jurisdiction to commit to eliminating hepatitis C as a public health threat. Advocates welcome the breakthrough, and fight on to fully fund a comprehensive, evidence-based plan to end the HCV epidemic.
|Consensus Statement on Hepatitis C Elimination in NYS
The Consensus Statement consists of five pillars to guide the statewide elimination plan:
1. Enhance HCV prevention, testing, and linkage to care services for people who inject drugs, people who are incarcerated, MSM, and other populations disproportionately impacted by HCV infection.
2. Expand HCV screening and testing to identify people living with HCV who are unaware of their status and link them to care.
3. Provide access to clinically appropriate medical care and affordable HCV treatment without restrictions, and ensure the availability of necessary supportive services for all New Yorkers living with HCV infection.
4. Enhance NYS HCV surveillance, set and track HCV elimination targets, and make this information available to the public.
5. Commit NYS government and elected officials, public health professionals, HCV experts, and industry partners to leadership and ownership of the NYS Plan to Eliminate HCV alongside community members living with and affected by HCV.
Read the full consensus statement
- Centers for Disease Control and Prevention (U.S.). Surveillance of Viral Hepatitis – United States, 2015: Summary of Trends in Viral Hepatitis. Atlanta: Department of Health and Human Services (U.S.), Centers for Disease Control and Prevention. https://www.cdc.gov/hepatitis/ statistics/2015surveillance/commentary.htm
- Department of Health (New York State). Communicable Disease Electronic Surveillance System. Albany: Department of Health (New York State), Viral Hepatitis Section. 2017 May. Department of Health and Mental Hygiene (New York City). New York City: Bureau of Communicable Disease, Viral Hepatitis Program. 2017 May. https://www1.nyc.gov/assets/doh/downloads/pdf/cd/hepatitis-b-and-c-annual-report-2016.pdf
- Department of Health (New York State). HIV/AIDS Surveillance Annual Report 2016. Albany: Department of Health (New York State), Viral Hepatitis Section. https://www.health.ny.gov/diseases/aids/general/statistics/annual/2016/2016_annual_surveillance_report.pdf