HFI’s Legislative Areas of Focus

Improve Patient Care & Access

  • Health care access and delivery: Transforming our health care system to provide care that is appropriate, high-quality, equitable, and patient-centered. HFI is determined to help reduce health care costs and making care more affordable.
  • Viral Hepatitis Disparities – Viral Hepatitis is one of several health issues disproportionately affecting ethnic minorities. While hepatitis is preventable, minority groups encounter cultural barriers to receiving adequate and high quality health care from an array of factors that may contribute to the high incidence of hepatitis-related morbidity and mortality. Presently these identified underserved and uninsured communities receive healthcare rife with problems of disparities in access, costs, cultural obstacles and treatment.  HFI, along with its Stakeholders, develop key recommendations to address these disparities and their underlying causes to make meaningful progress toward disease elimination.
  • HFI calls on members of the House of Representatives to co-sponsor and advance the bipartisan Patients’ Access to Treatments Act. This important issue concerns the restrictions of the private insurance practice of specialty tiers, where patients with complex therapies are forced to pay a large percentage of the medications cost out-of-pocket. In these instances, the cost of (an often life-sustaining) therapy alone can create an insurmountable barrier to access.
  • HFI urges members of the House of Representatives to co-sponsor and advance the bipartisan Viral Hepatitis Testing Act. Knowing your status is the first step in being connected to care and support. Early intervention not only saves lives, it saves the federal healthcare system money by mitigating the need for more serious interventions, like organ transplantation.
  • Specialty Therapies – The cost of specialty therapies continues to increase significantly as the number of available specialty drugs grows rapidly. HFI knows it is crucial to evaluate the best techniques for managing cost, access, and quality of specialty therapies for our patient populations.

Congress Can Help

Advance Medical Science and Research

  • The 2015 Omnibus Bill largely flat-funded federal agencies of interest to the infectious diseases community. To this end, HFI will look towards the FY 2016 appropriations process to continue to engage on important infectious disease policy issues. Recent years of near-level funding have created significant challenges for NIH’s liver disease research portfolio and CDC’s hepatitis and diabetes-related public health activities. Congress should reinvigorate our national commitment to these programs while remaining mindful of the savings that can be generated through meaningful investments in these areas.
  • Providing the Division of Viral Hepatitis at the Centers for Disease Control and Prevention (CDC) with $62.8 million through the Fiscal Year (FY) 2016 appropriations process, an increase of $31.4 million over FY 2015.
  • Cosponsoring the bipartisan Viral Hepatitis Testing Act (H.R. 1101/S. 1287) by contacting the office of Congressman Brett Guthrie (R-KY-2nd) or the office of Congressman Mike Honda (D-CA-17th). In the Senate, please contact the office of Senator Mark Kirk (R-IL) or the office of Senator Maize Hirono (D-HI) to become a cosponsor of this important legislation.
  • Ensuring constituent access to innovative treatments and cures by supporting the bipartisan Patients’ Access to Treatments Act (H.R. 1600) and the bipartisan Part D Beneficiary Appeals Fairness Act (H.R. 2624/S. 1488). You can cosponsor H.R. 1600 by contacting the office of Congressman David McKinley (R-WV-1stor the office of Congresswoman Lois Capps (D-CA-24th). You can cosponsor H.R. 2624 by contacting the office of Congressman Hank Johnson at (D-GA-4th) or the office of Congressman McKinley. You can cosponsor S. 1488 by contacting the office of Senator Bill Nelson (D-FL) or the office of Senator Susan Collins (R-ME).

State Initiatives

HFI continues to advance legislation through our Patient Advisory Council and our state based patient advocates nationwide that are integral for passage of federal and state legislation that proactively addresses liver disease, hepatitis, harm reduction and increased access to testing, screening, prevention and treatment regimens.

Collaborative Coalition Advocacy

There is strength in numbers. HFI has joined with other organizations in advancing the following issues by either leading, as a member, or serving as a co-chair or steering committee member on the following issues:

  • Appropriations/Funding – Hepatitis Appropriations Partnership (HAP) is a national coalition based in Washington, DC and includes community-based organizations, public health and provider associations, national hepatitis and HIV organizations, and diagnostic, pharmaceutical and bio-technology companies dedicated to increasing public funding and support for viral hepatitis. HAP works with policy makers and public health officials to increase federal support for hepatitis prevention, testing, education, research and treatment.
  • BiosimilarsPatients for Biologics Safety & Access (PBSA), the patient-run coalition is dedicated to protecting patient access to safe and effective biologic medicines. PBSA members represent millions of patients living with serious, life-threatening and difficult-to-treat conditions, ensures adequate patient safety protections in place as the Food and Drug Administration (FDA) creates the regulatory pathway for so-called biosimilar medications.
  • CancerDeadliest Cancers Coalition– The Deadliest Cancers Coalition is a collaboration of national non-profit organizations focused on addressing policy issues related to our nation’s most lethal or recalcitrant cancers, defined as those that have five-year relative survival rates below 50%.
  • Coalition for Health Funding – Established in 1970, the Coalition for Health Funding is the oldest and largest nonprofit alliance working to preserve and strengthen public health investments in the best interests of all Americans.
  • Digestive DiseasesDigestive Disease National Coalition (DDNC) – The DDNC focuses on improving public policy related to digestive diseases and increasing public awareness with respect to the many diseases of the digestive system.
  • Maryland Hepatitis Coalition – MHC was founded in 2008 with a broad coalition of health care settings, healthcare providers, industry, patient advocates and dedicated to improving hepatitis services for those individuals at risk and infected with hepatitis B and C in the State of Maryland.
  • NVHRNational Viral Hepatitis Roundtable is a broad coalition working to fight, and ultimately end the hepatitis-B and hepatitis-C epidemics. We seek an aggressive response from policymakers, public health officials, medical and health care providers, the media, and the general public through our advocacy, education, and technical assistance.
  • Specialty TherapyCoalition for Specialty Therapy Access – as a unified voice within the specialty therapy community, the Coalition for Specialty Therapy Access connects policymakers and constituents to ensure the patient voice is well represented for key legislative and regulatory issues.
  • The Alliance for Safe Biologic Medicines (ASBM), is an organization composed of diverse healthcare groups and individuals from patients to physicians, innovative medical biotechnology companies, and others who are working together to ensure patient safety is at the forefront of the biosimilars policy discussion.  ASBM to serve as an authoritative resource center of information for policy makers, the healthcare community and the general public on the issues surrounding biologic medications.
  • Viral HepatitisHepatitis Disparities Stakeholders Consensus Meetings/Briefings – led by HFI, and comprised of a number of leading minority health professions and advocacy organizations, the Stakeholders annually address key strategic matters that serve to develop substantive policy recommendations across HBV and HCV topical areas including; education and training, local, state and federal policy, testing, diagnosis, patient responsibility, research, care and treatment, etc.

 

For additional information, or to participate in our advocacy efforts contact the Hepatitis Foundation International, please feel free to contact us at any time.

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