Advocacy Resources

 
 
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This page contains resources for federal and state-level advocacy efforts as well as legal advocacy around HCV treatment access.

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Federal Advocacy Resources

The American Journal of Managed Care Special Issue: Hepatitis C  May 4, 2016
In early May, the American Journal of Managed Care released a special issue on hepatitis C. This issue highlights groundbreaking research on important issues, such as access to curative therapies, impact of high out-of-pocket cost sharing on patients and the public health and economic value of curing patients now. 

  • NVHR’s Executive Director, Ryan Clary, published a commentary in this issue titled It’s Time to End Insurance Restrictions on Life-Saving Hepatitis C Treatments. In this commentary, Clary highlights the shortsightedness of insurance restrictions on life-saving hepatitis C treatments, and calls for private insurers and Medicaid programs to give everyone with hepatitis C access to a cure.

  • To view the video feed and the four presentations from the event, click here.

ADAP Crisis Task Force Statement on Upcoming Negotiation with Industry Partners  April 15, 2016
On March 31, 2016, the ADAP Crisis Task Force met with AbbVie, Bristol-Myers Squibb, Gilead Sciences, and Merck & Co. to negotiate pricing of curative DAA HCV medication. These negotiations are part of the Task Force’s commitment to ensuring that all ADAP clients in need of HCV treatment are able to access these breakthrough, life-saving, curative treatments. Manufacturers offer substantial discounts to ADAPs for HIV medications, and the Task Force encouraged them to offer comparable discounts on curative HCV treatments.

"Science, Not Stigma, Must Drive Hepatitis C Treatment Decisions"  November 12, 2015 
This press release was issued by the AIDS Institute, NVHR, and Project Inform in response to statements made by Medicaid Health Plans of America CEO, Jeff Myers, who made stigmatizing statements to the media.

"Assuring Medicaid Beneficiaries Access to Hepatitis C (HCV) Drugs."  November 5, 2015
This advisory letter was sent to state Medicaid Directors from the Centers for Medicare & Medicaid Services addressing utilization of DAA hepatitis C treatment. (See NVHR press release in response to this communication.)

Letter from Presidential Advisory Council on HIV/AIDS (PACHA) to President Obama  June 9, 2015
This letter from PACHA was written regarding current public and private insurance practices for the diagnosis and treatment of hepatitis C virus, which PACHA highlights as restrictive.

"The Hepatitis C Treatment Access Crisis"  May 22, 2015
This presentation, by NVHR Executive Director Ryan Clary, was made to the Presidential Advisory Council on HIV/AIDS (PACHA) Committee on HIV, Viral Hepatitis, and STD Prevention and Treatment (CHAC). In it, he highlights missed opportunities, challenges, and limitations concerning hepatitis C treatment access.

NVHR Position Statement – Hepatitis C Treatment Access  January 2015
NVHR released a statement supporting the position that all people living with hepatitis C deserve lifesaving treatment, and called for immediate action for significantly expanded access to address the largest blood borne viral epidemic in the United States.

"The Cost and Value of Biomedical Innovation: Implications for Health Policy"  October 1, 2014
The 
Engelberg Center for Health Care Reform and the USC Schaeffer Center for Health Policy and Economics hosted a half-day forum to discuss the serious coverage challenges that accompany breakthrough DAA treatments. Researchers presented economic modeling simulations that illustrated the value and long-term effects of such treatments; and explored potential policy solutions for financing biomedical innovations.

Community Sign-on: All People with Hepatitis C Deserve Lifesaving Treatment  August 2014
In response to the escalating crisis in access to new, lifesaving hepatitis C medications, a coalition of organizations and medical providers developed the following sign-on statement. This statement calls on all stakeholders to work together on a solution that ends the current practice of rationing hepatitis C treatment and sends a strong statement that all lives are worth saving.

State Level Advocacy Resources

Stand with Mumia Abu-Jamal: Demand Hepatitis C Treatment Now  September 7, 2016
NVHR and a coalition of others living with hepatitis C, advocates, health educators and medical providers stood in solidarity with those demanding immediate hepatitis C (HCV) treatment for Mumia Abu-Jamal, as well as for all people living with HCV in the Pennsylvania prison system.

NVHR Webinar on Hepatitis C Treatment Access: State-Level Advocacy Successes  June 17, 2016
NVHR held this webinar in June of 2016 to highlight the work of four advocates who have led successful efforts to expand access to hepatitis C treatment in their states. They shared their strategies, lessons learned, and advice for advocates in other states.

St. Joseph’s Medical Center Letter to AHCCCS  May 3, 2016
St. Joseph’s Medical Center in Arizona wrote to their state Medicaid, a system entitled Arizona Health Care Cost Containment System(AHCCCS), about treatment access restrictions.

"Lawsuit Challenges Exclusion of Coverage for Cure to Hepatitis C Virus"  February 18, 2016
This press release was issued by Columbia Legal Services, Sirianni Youtz Spoonemore Hamburger, and the Center for Health Law and Policy Innovation at Harvard Law School regarding a class action lawsuit against the Washington State Health Care Authority.

"Assuring Medicaid Beneficiaries Access to Hepatitis C (HCV) Drugs"  November 5, 2015
This advisory letter was sent to state Medicaid Directors from the Centers for Medicare & Medicaid Services and addressed the utilization of DAA hepatitis C treatment for Medicaid beneficiaries. Read the NVHR press release in response to this communication.

"Template and white paper for State Insurance Commissioners re: HCV Tx Access"  November 2015
Advocates can use this template to reach out directly to their State Insurance Commissioner about removing illegal restrictions to access to hepatitis C treatment.

Project Inform and NVHR Letter to California Department of Healthcare Services  June 2, 2015
Project Inform and NVHR drafted this letter to the California Department of Health Care Services after they released an updated draft utilization and treatment policy for hepatitis C. Project Inform and NVHR applauded certain items in the draft utilization and submitted questions and concerns about the draft.

Project Inform Letter to California State Department of Health Office of AIDS  May 15, 2015
The California State Department of Health Office of AIDS updated its treatment authorization policy to allow coverage of hepatitis C treatment for all ADAP patients with hepatitis C, regardless of stage of fibrosis. Project Inform drafted this letter asking the department how this policy would apply to patients who could not use Viekira Pak, the preferred drug under this policy.

"Hepatitis C Cure For All Pennsylvanians”  January 2015
This fact sheet was created by Hepatitis C Allies of Pennsylvania (HepCAP) and the Community Liver Alliance to provide information on hepatitis C treatment access in Pennsylvania.

Community Sign-On Letter Regarding New York State Drug Utilization Review Board Hepatitis C Virus Clinical Criteria Review  October 6, 2014
New York community organizations, medical providers, and individuals drafted this sign-on letter on behalf of constituents at risk for and living with the hepatitis C virus (HCV) in response to the New York State Drug Utilization Review Board’s proposed clinical criteria for HCV treatment in New York’s Medicaid program.

Project Inform and NVHR Letter to California Department of Health Care Services  August 25, 2014 
Project Inform, NVHR, and other organizations, medical providers, and lay health and social service providers representing constituents at risk for and living with the hepatitis C virus (HCV) drafted this letter in response to the final “California Department of Health Care Services Utilization and Treatment Policy for Simeprevir and Sofosbuvir in the Management of Hepatitis C.” They list their grievances and concerns in this letter.

Project Inform Letter to California Department of Health Office of AIDS  June 20, 2014 
Project Inform drafted this letter in response to the California Department of Health Office of AIDS release of guidelines outlining the ADAP treatment policy for the lifesaving medications sofosbuvir and simeprevir. They outline their concerns about the draft policy here, citing its restrictions given the life-saving nature of new DAA medications.

Project Inform and NVHR Letter to California Department of Health Care Services  June 2, 2014 
Project Inform and NVHR drafted this letter in response to the California Department of
Health Care Services release of guidelines outlining the Medi-Cal treatment policy for the lifesaving medications simeprivir and sofosbuvir. They outline there concerns about the policy here, again citing its restrictive nature given the opportunity of DAA medication to improve health, save lives, and considerably reduce health care costs.

NVHR Letter to State Medicaid Directors  February 21, 2014
NVHR sent this letter to State Medicaid Directors regarding the AASLD/IDSA hepatitis C treatment guidelines.

Sample Letters Responding to State Medicaid Restrictions

Letter from HepC Alliance to Missouri HealthNet Department of Social Services Director 
January 20, 2016
This letter, from HepC Alliance, discussed Missouri’s restrictive prior authorization criteria and its clinical edits for new hepatitis C DAA treatment.

Letter from Legal Services of Eastern Missouri to Missouri State Medicaid Officials  January 13, 2016
This letter, from Legal Services of Eastern Missouri, discusses Missouri’s stringent prior authorization criteria for hepatitis C drugs.

Comment from Hep B United and NVHR to DC Medicaid Pharmacy & Therapeutics Committee  November 26, 2015
NVHR and 
Hep B United submitted this comment with regard to the District of Columbia Department of Healthcare Finance Pharmacy & Therapeutic Committee’s Preferred Drug List Review concerning hepatitis B and hepatitis C agents.

Letter from Vermont Legal Aid, Inc. to Department of Vermont Health Access Commissioner  November 20, 2015 
This letter, from Vermont Legal Aid, Inc., asked the Department of Vermont Health Access (DVHA) to change its criteria for authorizing treatment with direct-acting antiviral drugs for Medicaid patients with hepatitis C. Read DVHA's response here.

Comment from New York Community Groups to NY State Drug Utilization Review Board 
November 6, 2015
New York community groups wrote this comment in response to the Harvoni clinical criteria for hepatitis C treatment.

Letter from Project Inform and NVHR to California State DHCS  June 2, 2015
Project Inform and NVHR submitted this letter in response to the California Department of Health Care Services releasing an updated draft utilization and treatment policy for hepatitis C. Find the DRAFT Policy referenced in letter above here.

Sign-on Letter from AIDS Connecticut to Connecticut State Medicaid Officials February 19, 2015
AIDS Connecticut and a coalition of Connecticut organizations wrote this sign-on letter to the CT State Medicaid officials about the new clinical criteria for HCV treatment under Connecticut’s Medicaid program.

Letter from New Haven Legal Assistance Association to Connecticut State Medicaid Officials  February 3, 2015
New Haven Legal Assistance Association wrote this letter to Connecticut State Medicaid officials in response to the new clinical criteria for HCV treatment under Connecticut’s Medicaid program.