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Alan Brownstein

President/CEO, The American Liver Foundation
Statement on Hepatitis C

liver disease research has continued to grow, although it has grown only modestly. The Fiscal Year 1998 total of $190,950,000 represents an increase of 7.1% over the Fiscal Year 1997 total. We believe that Liver Disease research funding should grow at an annual rate of 15% a year for the next five years in order to adequately address the many research opportunities identified by the NIH Research Action Plan. With regard to funding for hepatitis C research, the ALF believes that the research funding should grow much faster than this overall rate in view of the low hepatitis C current research funding levels and the very significant health care threat posed by hepatitis C.

There are many significant liver disease challenges—in addition to hepatitis C—that need to be addressed and we will mention only two as an illustration.

Pediatric liver disease is difficult to treat because a child's immunological defenses and liver structure and function are immature. Due to the high incidence of liver disease in children - as high as 1 in 2,500 live births - there is an urgent need for more research into treatment and prevention of pediatric liver disease. There has been no specific attention given to this important area. There are also several liver diseases that disproportionately affect women. For example, primary biliary cirrhosis (PBC) is a chronic liver disease that causes slow progressive destruction of bile ducts in the liver, and once cirrhosis develops the only viable treatment is liver transplantation. Women are affected 10 times more frequently than men. Autoimmune hepatitis is a progressive inflammation of the liver, is chronic and usually increases in severity over time resulting in possible liver failure. Liver transplantation is the only treatment of choice at the later stages of the illness. Seventy percent (70%) of all cases of autoimmune hepatitis are women.

FIGHTING HEPATITIS B (HBV): INVESTING IN A HEALTHIER FUTURE

Current estimates suggest that there are nearly 150,000 new infections of hepatitis B annually and there are about 1.2 million people with chronic hepatitis B infection in the United States. In the United States, hepatitis B is spread predominantly through sexual contact, from blood to blood contacts, as well as transmission from infected mothers to their new born. However, in many cases, no known risk factor can be identified. The greatest number of reported infections for hepatitis B are in the young adult category, due to the sexual transmission of the disease as well as other youth-associated risk

factors. All across the country pilot programs vaccinating adolescents have been very successful. While the CDC, the American Academy of Pediatrics and the American Academy of Family Physicians have recommended that all 11 or 12 year olds be given hepatitis B vaccinations, CDC estimates that only 20% of the Nation's 4,000,000 11 to 12 year olds are being given hepatitis B vaccinations. This results in 30,000 new teenage infections each year.

Since last year's Subcommittee hearings, 5 states (California, Florida, Colorado, North Carolina and Wisconsin) have passed HBV vaccination requirements for adolescent's school admission. An additional 2 to 3 states are considering such laws and slow progress is now being seen. To further address this threat and accelerate progress, ALF recommends that CDC increase its internal program and support adolescent health coordinators at the state and local levels to work with physicians, nurses, public health care providers, schools, state legislators and others to increase the rate of compliance. This initiative will require an additional $5 million be made available to CDC primarily to support state programs.

NATIONAL SUMMIT ON HEPATITIS C

I would like to announce to you a new nationwide alliance to fight hepatitis. The American Digestive Health Foundation (ADHF) ALF Digestive Health Initiative Vital Hepatitis Education Campaign represents an alliance between lay, medical and scientific communities. Its purpose is to educate and inform physicians, patients, their families and the general public about hepatitis. Our goal is to improve the prevention, diagnosis, and treatment of hepatitis A, B, and C. We intend to reach the millions of people who have hepatitis C and may not know it, including people infected through blood transfusions prior to 1992, before the blood supply was made safe. In addition we want to ensure that hepatitis patients receive the most effective and up-to-date medical care possible. On February 24 1998, to launch this effort, we are bringing together in Washington 200 to 250 national health, human services and civic organizations to gain their help in informing their constituents across the country. These organizations represent African Americans, Hispanics, Asians, Native Americans, gay men, injection drug users, older Americans, teens, young adults, and parents. Armed with the Campaign's information and educational materials with messages targeted to their populations, they will spread the word through their

affiliates in local communities across the country. Mr. Chairman, we bring the National Summit to the Subcommittee's attention not to request your assistance for funding these activities but to demonstrate the very significant efforts of many private organizations to address this emerging national health epidemic.

UNFINISHED BUSINESS: NOTIFICATION AND EDUCATION OUTREACH TO THE 300,000 PEOPLE INFECTED WITH HEPATITIS C DUE TO PRE 1992 BLOOD TRANSFUSIONS

Mr. Chairman, prior to 1992 there were inadequate blood screening tests for hepatitis C and an estimated 300,000 Americans are now infected with hepatitis C due to receiving a pre-1992 transfusion of contaminated blood. In spite of full knowledge of this situation, the Department of Health and Human Services has yet to take action to notify or even attempt a public information outreach to those who may well be infected. We would urge the Subcommittee's assistance in prodding the Department to take appropriate action in this matter.

ALF RECOMMENDATIONS FOR FISCAL YEAR 1999 FUNDING

NIH and CDC: the HCV Consensus Development Conference Recommendations:

  • $56 million (CDC-$10; NIDDK-$17; NIAID-$23; NCI-$3; and NIAAA-$3).

NIH: the Research Action Plan for Liver Disease:

  • $28.7 million (this 15% increase would be allocated among the NIH Institutes based on the Research Action Plan to be submitted to the Committee by NIH).

CDC: HBV vaccinations, surveillance and epidemiological studies, and public health information:

  • $5 million to increase the rate of adolescent HBV vaccinations.
  • $2 million to increase the rate of epidemiological studies and surveillance for liver diseases.
  • $1 million to increase the public health information regarding hepatitis and other liver diseases ($5 million per the HCV Consensus Development Conference is also included above within the $56 million needed to implement the HCV Consensus Development Conference recommendations).

HRSA: Expanding the supply or organs:

  • $5 million to expand the Public Awareness Program to increase the rate of organ donation.