President/CEO, The American Liver Foundation
Statement on Hepatitis C
Mr. Chairman and Members of the Committee, thank you for giving the American Liver Foundation the opportunity to present testimony to the Subcommittee this year as you begin to consider funding priorities for Fiscal Year 1999. We very much appreciate the leadership of Mr. Porter and the other members of the Subcommittee which has resulted in significant growth for biomedical research and a continuing and insightful guidance to the NIH and to the other agencies of the Public Health Service in addressing the health needs of the nation.
My name is Alan Brownstein and I am the President and Chief Executive Officer of the American Liver Foundation. I am joined by Debbie Delgado-Vega, Founder and President of the Latino Organization for Liver Awareness (LOLA). Mr. Chairman, we are aware of the Committee's five minute rule and will not exceed a total of five minutes.
The American Liver Foundation (ALF) is a national voluntary health organization dedicated to the prevention, treatment and cure for hepatitis and other liver and gallbladder diseases through research and education. ALF has 26 Chapters nationwide and provides information to 200,000 patients and families. Over 70,000 physicians, including primary care practitioners and liver specialists and scientists, also receive regular information through the ALF scientific newsletter, Liver Update. ALF was founded 22 years ago by the American Association for the Study of Liver Diseases. In recent years ALF has provided over $6 million to support liver research with guidance from our medical advisors.
The ALF Board of Directors is composed of scientists, clinicians, patients and others who are directly affected by liver diseases. Every month ALF receives approximately 15,000 calls requesting information about hepatitis and other liver diseases. Ninety percent (90%) of the calls are about hepatitis with more than fifty percent (50%) of those calls requesting information about hepatitis C (HCV). This distribution of calls reflects both the significant health threat posed by the emerging hepatitis epidemic that faces the nation and the public's interest in learning more about this health threats.
For Fiscal Year 1998 we applaud the leadership of this Subcommittee and your colleagues in the Senate which resulted in a 7.1% or $907 million increase for NIH. We were also very pleased that an increase of $500,000 was provided to HRSA's Division of Transplantation for a Public Awareness Program to increase the rate of organ donation.
Mr. Chairman, the ALF supports the Congressional leadership committed to doubling the NIH budget in five years. To reach this goal the ALF supports a 15% increase for NIH in Fiscal Year 1999 and believes that as the Subcommittee increases funding for NIH and CDC, appropriate increases should also be provided for staff at the CDC and NIH as well.
The programs and the biomedical research conducted by NIH and CDC make an important contribution to the health and lives of all Americans. In addition to the funding provided, the Subcommittee also provided important leadership and guidance with report language and statements by the Chairman on the House Floor on liver disease research and associated public health initiatives. Most specifically the Committee provided the following guidance. NIH was encouraged to:
- submit an Action Plan for Liver Disease Research
- to the Committee along with the Fiscal Year 1999 budget request;
- place high priority on research to prevent, cure and better treat liver disease;
- provide a special focus on the needs of pediatric liver disease;
- initiate the research suggested by the hepatitis C Consensus Development Conference held in March,1997 in a fully coordinated manner with the involvement of all the appropriate institutes with leadership from the Office of the Director.
HRSA was urged to support research to ensure that the organ and bone marrow campaigns can be effectively targeted and sustained over the long term.
Additionally, the Committee concurred in Conference in the language of the Senate which added the additional guidance, as follows. NIH was encouraged to:
- give priority consideration to initiating the research recommendations of the hepatitis C Consensus Development Conference in a manner responsive to the professional judgment funding levels;
- disseminate the hepatitis C Consensus Conference recommendations among health care providers to heighten awareness with regard to effective treatments that are available, and lifestyle changes necessary to modify the progression and transmission of the disease;
- strengthen its outreach to the liver disease research community and its coordination and information program regarding liver disease research.
CDC was encouraged to:
- work with physicians, nurses, public health care providers, schools, and others to increase the rate of compliance with the hepatitis B vaccination program;
- give priority to developing the necessary epidemiological information regarding trends in chronic liver disease;
- expand in Fiscal Year 1998 its support of a hepatitis and Liver Disease Information Center to a level that would meet the need for public information on hepatitis and liver disease.
The significant progress made since last year's Subcommittee hearing, most particularly in response to the Committee's guidance, includes:
- NIH liver disease research is projected to total $190,950,000 million in Fiscal Year 1998, up $12,655,000 or 7.1% from Fiscal Year 1997;
- NIH did convene a symposium of extramural leaders in the field of liver disease research to begin development of the Research Action Plan for Liver Disease, a landmark document, which will soon be submitted to the Committee;
- the NIDDK and NIAID Institute Directors, the NCI Deputy Director and the NIH Office of the Director did meet with the ALF to access the necessary response to the new research recommendations of the hepatitis C Consensus Development Conference;
- the White House announced in November a series of new initiatives to increase the rate of organ donation;
- the CDC did enter into a cooperative agreement with the ALF to assist in better meeting the public's need for information about hepatitis and other liver diseases.
This is important progress, and we thank the Subcommittee for your leadership and the NIH, CDC and HRSA leadership for their excellent cooperation.
Mr. Chairman, in spite of our progress, much remains to be done. We are delighted that the NIH is developing a first ever Research Action Plan for Liver Disease and we are delighted that NIH recognized the seriousness of hepatitis C by convening a Consensus Development Conference on hepatitis C. The development of research recommendations and Research Action Plans are significant only if they are implemented.
SOME FACTS ABOUT HEPATITIS AND OTHER LIVER DISEASES