June 15, 2015
WASHINGTON (JUNE 15, 2015) —The O’Neill Institute for National and Global Health Law, part of Georgetown University Law Center, has been awarded a one-year fellowship from Gilead Sciences Inc. to support the O’Neill Institute’s new Hepatitis Policy Project. The Policy Project will explore issues and barriers to access for effective treatments for hepatitis C in the United States.
According to the U.S. Centers for Disease Control and Prevention, the vast majority of adults infected with hepatitis C are baby boomers (those born between 1945 and 1965) and most do not know they have it. Many were infected in the 1970s and 1980s when rates of the disease were highest and the longer people live with the disease the more likely they are to become sick. Already, hepatitis C-related deaths are on the rise as are rates of liver disease and liver cancer. Widespread onset of these diseases could greatly strain the national capacity to provide treatment for advanced liver disease and needed organs for transplantation.
The purpose of the O’Neill Institute’s Hepatitis Policy Project and the Gilead Fellowship is to support hepatitis C consumer education and advocacy organizations by providing legal and policy research on key issues. The Fellow will examine issues related to financing and extending access to Hepatitis treatment through the major public programs, Medicaid and Medicare, and through private health insurance plans, including both group insurance, which covers nearly half of the U.S. population, and new coverage provided through marketplace health plans under the Affordable Care Act (ACA).
“The recent FDA approval of highly effective curative treatments for hepatitis C infection has raised excitement over the prospect of seriously addressing a burgeoning health problem in the United States and around the world,” says the O’Neill Institute’s Jeffrey S. Crowley, who will lead the Policy Project. “However, the estimated numbers of people in need of treatment, and the cost of therapy have raised questions among public and private payers, and consumers over the affordability and viability of expanding access to Hepatitis C treatment.”
Crowley is Distinguished Scholar and program director of the O’Neill Institute’s National HIV/AIDS Initiative. He is a widely recognized expert on U.S. health policy, HIV/AIDS policy, disability policy, with significant expertise related to pharmacy management issues.
He says in order to achieve a successfully outcome, the fellow will seek to establish working relationships with key organizations and coalitions conducting hepatitis C education and advocacy, and representatives of hepatitis C care providers to understand the current policy issues they are addressing and seek to provide background analysis and support.
“One of the challenges that many of these organizations face is lack of capacity to adequately understand or analyze legal or policy issues that arise in seeking to broaden access to key services or to make federal programs more responsive to persons at risk for or living with hepatitis C,” Crowley explains.
He says hepatitis C consumer education and advocacy organizations play an important role in the domestic policy dialogue around screening, prevention, access to care, and treatment.
“Critically, they also often represent a real world consumer perspective that has proven essential to generating public support for addressing health issues such as Hepatitis C and ensuring that new treatments and services are made available to all in need, including persons in marginalized or underserved communities,” Crowley says.
While Gilead has provided the funding for the fellowship, the O’Neill Institute will exercise full control and discretion over the content including reports and policy statements developed and distributed.