Donna Cryer Testifies before Presidential Advisory Council on HIV/AIDS (PACHA)

PUBLIC COMMENT

by
DONNA R. CRYER, JD
PRESIDENT AND CEO
GLOBAL LIVER INSTITUTE

before the 54th PRESIDENTIAL ADVISORY COUNCIL ON HIV/AIDS (PACHA)

SEPTEMBER 5, 2014

Good morning, my name is Donna Cryer. I am President and CEO of the Global Liver Institute (GLI), the innovation and collaboration platform for the liver community worldwide. At GLI we work to (1) identify and accelerate the adoption of best practices in liver disease prevention, education, community engagement, and health system design and (2) expand the number and type of collaborative partners engaged and invested in liver health.

This is a unique moment in history when we have both a public health emergency and a public health opportunity.

I will be making four points in the brief time allotted today.

1. Names Matter: While I am grateful to the President’s Advisory Council on HIV/AIDS for picking up this issue, I wish I were speaking to the President’s Advisory Council on HIV/AIDS and Viral Hepatitis. In recognition of the scale and impact of viral hepatitis I would request that there be a systematic review of offices and titles throughout the administration to better reflect the current and future focus.
2. Budgets Matter: When liver patients like myself repeatedly hear clinical recommendations trumped by cost concerns, trust in our government, our health care systems, and communities is eroded. Budgets are constructs that reflect our choices and our values as a nation. Refusal to appropriately fund viral hepatitis surveillance programs for all 50 states, DC and the territories, or treatment for all HCV infected patients who would benefit according to the medical guidelines in all federal programs is a choice that can be undone.We urge PACHA to advise the president to increase the budget recommendations related to viral hepatitis for 2016. Specifically, to support the CDC Professional Judgment Budget which states that $170.3 million is needed in FY16 to address the epidemic and to establish a Viral Hepatitis Innovation Fund in the Office of the HHS Secretary which, like the Minority AIDS Initiative, will allow HHS agencies to compete for funds to support innovative hepatitis prevention and treatment projects for at-risk communities.That said, there is a great role and opportunity for public/private partnerships that can amplify government efforts and ensure the scalability and sustainability of initiatives. We have successful models for this in the Red Dress Campaign initiated by NHLBI and then expanded far beyond those agencies, nonprofits, and companies directly involved in heart disease. I would request the PACHA members from innovator companies to share their ideas for working collaboratively to increase the number of people who know their HCV status.
3. Testing Matters: We need to move beyond cohort testing and even beyond currently known risk-based testing to universal testing for Hepatitis B and C. If you have a liver you are at risk for liver disease. Universal testing, including rapid testing, which has been shown to dramatically reduce loss to follow up and facilitate linkage to care, would more accurately capture all cases, improving the quality of our surveillance data, destigmatize HCV, and introduce liver health awareness early, providing opportunities to reduce risk or progression not only of viral hepatitis but fatty liver disease which is also rising with rates of obesity.
4. Treatment Matters: There is a role for this council to ensure that all federal and federal/state programs in which HCV patients are enrolled, whether Medicare, Medicaid, VA, prisons, or plans under the ACA, operate in a non-discriminatory fashion regarding both patients and treating clinicians.Plans and programs should be prohibited from requiring that patients have advanced liver disease before being treated, as several state Medicaid plans have recently announced. This is as if we required cancer patients to advance to Stage IV or have their disease metastasize before being deemed eligible for care. We would never contemplate that with cancer patients. We should not tolerate that for liver patients.  Likewise, unequivocally barring  IDUs, or erecting other clinically invalid barriers to treatment should be banned. It is against public health and public policy, as we know that HCV testing and treatment are cost effective as per the CDC and reduce rates of transmission, progression to liver cancer and the need for transplant.We should encourage the hepatology community to work with infectious disease specialists, primary care doctors and other providers to quickly expand the number of clinicians with expertise sufficient to treat the majority of patients. Advanced liver patients will continue to require referral to hepatologists, oncologists, and other appropriate specialists. Scalable models like Project ECHO should be considered for accelerated expansion and replication.

We urge PACHA to convey in its recommendations and actions that Liver Patients Matter.

Thank you for your time and consideration.