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VA HEPATITIS C PROGRAM

ALAN P. BROWNSTEIN, PRESIDENT AND CHIEF EXECUTIVE OFFICER, AMERICAN LIVER FOUNDATION

July 12, 2000

Statement of the American Liver Foundation By: Alan P. Brownstein, MPH American Liver Foundation President and Chief Executive Officer

The American Liver Foundation

Mr. Chairman and members of the Subcommittee, my name is Alan P. Brownstein and I am the President and Chief Executive Officer of the American Liver Foundation (ALF). Thank you for giving our organization the opportunity to submit testimony regarding the vulnerability and risk of veterans to hepatitis C infection and the response of the Department of Veterans Affairs.

ALF is a national voluntary health organization dedicated to the prevention, treatment and cure of hepatitis and other liver and gallbladder diseases through research and education. ALF has 30 Chapters nationwide and provides information to more than 300,000 patients and families. More than 70,000 physicians and scientists, including primary care practitioners and liver specialists, also receive information from ALF.

The ALF Board of Directors is composed of scientists, clinicians, patients and others who are directly affected by liver disease. Every month, ALF receives approximately 15,000 calls requesting information about hepatitis and other liver diseases. Over 90% of those calls are about hepatitis.

ALF was founded 24 years ago by the American Association for the Study of Liver Diseases. In recent years, ALF has provided more than nine million dollars to support hepatitis/liver disease research and more than ten million dollars to promote public awareness about hepatitis.

Applauding the Committee's Leadership

On behalf of the American Liver Foundation, we applaud the continued leadership of this Committee to bring appropriate focus and attention to hepatitis C and liver disease problems that exist among the veteran population. With your leadership, we believe that much progress has been made. We also applaud the efforts of the Department of Veterans Affairs as we believe both nationally and at the VISN's across the country a commitment to this problem is evident. We would note, however, that the Department of Veterans Affairs has consistently under-spent its budget that has been made available by Congress. For example, in FY 1999 $46 million was made available for hepatitis C funding, but only $27 million was spent. In FY 2000, $195 million has been made available, but only $ 100 million has been spent. The House Appropriations Committee has recommended and the full House has supported spending $340 million in FY 2001.

We applaud your leadership, but believe much remains to be done. We would encourage the Committee to focus it's attention to the continued under-spending by the Department of Veteran's Affairs on the hepatitis C crisis that exists among the veteran population.

ALF's Veterans Hepatitis C Liver Disease Council

Since testifying before this Subcommittee last year, ALF has formed the Veteran Hepatitis C Liver Disease Council to address the issue of hepatitis C and liver disease in the Veteran population. This council brings together representation from Veteran Service Organizations, Veteran Health Administration officials, the nation's leading medical authorities on hepatitis C, and ALF leadership to identify and implement the most expeditious means to increase the rate of testing and treatment for hepatitis C for at risk veterans. This Council stands unified in its firm commitment to help meet the needs of veterans affected by the hepatitis C virus.

The Council has identified four major goals of this campaign:- Raise awareness of hepatitis C infection risk factors/prevalence among veterans- Motivate veterans who may be infected with hepatitis C virus to seek testing and as appropriate, seek treatment- Provide credible, up-to-date hepatitis C information and education to at-risk veterans and those receiving treatment- To achieve the above goals through education and advocacy.

Following the Council's first inaugural meeting on June 15, 2000, two major campaigns are currently underway to help raise awareness of hepatitis infection risk factors. First, during the celebration of Independence Day last week (July 3-9), the Council's first initiative helped over 1,500 at-risk veterans get tested free of charge for hepatitis C through a nationwide promotion using an FDA approved home testing and counseling service (manufactured by Home Access Health Corporation).

Secondly, ALF has developed a veteran hepatitis C information brochure that is to be accompanied with a letter signed by the VA's Deputy Undersecretary for Health, Dr. Thomas Garthwaite and sent out to the 3.6 million veterans that use the VA health system. This letter with the ALF brochure is being printed and will be mailed to veterans in the near future.

The Prevalence and Impact of Hepatitis C in the United States and Among Veterans Hepatitis C, designated by the CDC, as an "emerging infectious disease" is one of the most serious public health problems that the United States will face as we enter the 21" century:

- Four million Americans have been infected with hepatitis C and most don't know it.- Ten thousand people die every year from Hepatitis C, and this amount is projected to triple in the next 10- 1 5 years.- Hepatitis C is the leading cause of liver transplantation.

Hepatitis C is a democratic disease that affects everyone - all races, men, women and children. It mirrors mainstream America ... doctors, lawyers, teachers and even soccer moms, not just those who received blood transfusions prior to 1992 and illegal injection drug users. However, it is important to recognize that some populations are more vulnerable to chronic hepatitis C than others. For example:

-1.8% Overall U.S. population-8-10% Veterans-3.5% Overall population between the ages of 35-55-1.5% White-3.2% African-American-2.1% Mexican-American.

Clearly, hepatitis C is a well-documented major health challenge for U.S. Because hepatitis C is a "quiet" virus, the vast majority of veterans with hepatitis C do not have symptoms, and thus, are unaware that they are affected. This combined with the prevalence of hepatitis C, and the fact that it is a serious, potentially life-threatening condition, underscores the importance of identifying those veterans who are infected. And further, new studies show that treatment succeeds in about 40% of patientswho are suited for treatment. And even for those who do not respond to treatment, it is important that they become aware, because there are interventions that can significantly slow down the progression of hepatitis C damage to the liver - for example, by abstaining from drinking alcohol, and making sure they are immunized to protect them from hepatitis A and B.

Veterans Health Administration Response

As stated in the Department's budget documents, hepatitis C has particular importance because of its prevalence in the VA's service population. The Administration's Fiscal Year (FY) 2001 budget proposal requests $340 million to support efforts to test and treat veterans with Hepatitis C. This is $145 million more than the $195 million made available in FY 2000 for this purpose. As noted earlier, while the budget requests and expenditure levels have increased, there has been a significant spending shortfall below amounts made available.

To address needs of hepatitis C positive veterans, VA designated medical centers in Miami, Florida and San Francisco, California as "Centers of Excellence" to serve as research and education lynchpins in VA's 5-point strategic initiative to respond to hepatitis C. The 5-point strategic initiative includes: 1) patient education; 2) health care provider education; 3) epiderniologic assessment; 4) treatment; and 5) research.

The Centers of Excellence have also developed risk factor and counseling recommendations for all VHAs, as well as treatment guidelines for the care of veterans with hepatitis C. These treatment guidelines will be updated periodically, and as there is a greater experience of clinical care, they can be broadened to be more inclusive. Management guidelines, such as the need of vaccination against hepatitis A and B, have also been distributed throughout the VHA system.

In collaboration with the Centers of Excellence, ALF has developed ten fact sheets on hepatitis and live disease for veterans. These educational materials have been widely distributed throughout the VA system.

Significant progress has been made, but more needs to be done. The recommendations of the ALF follow.

ALF RECOMMENDATIONS:

Challenges for the VA Hepatitis C Testing, Diagnosis & Treatment Program While it is clear that the commitment and significant budgeted support is in place to launch a public health campaign directed at hepatitis C among U.S. veterans, many challenges lie ahead. If these challenges are not addressed, it will not be possible to spend anywhere near the $340 million that has been budgeted. Some of the challenges facing this major public health undertaking are identified below along with the identification of some public and private sector partnership opportunities.

Challenge #1 - Infrastructure Development

In order to meet the increased demand for hepatitis C services, additional medical, psychological and managerial personnel will be needed at the VA's VISNNAMC Network.

- Public Sector Efforts Needed: Additional funding support needs to be identified and dedicated to support the additional personnel that will be needed over the next 4-6 years to meet the demand for hepatitis C treatment.

- Private Sector Efforts Needed: Methods for training primary care personnel to manage hepatitis C patients in consultation with specialists need to be explored. One such model being developed at ALF involves a program to increase the "Quantityand Quality of Health Care Services Provided in the Management of Chronic Hepatitis C Through the Expanded Use of Nurse Personnel." This plan has the potential for developing a training module coupled with a recruitment strategy to bolster the supply of hepatitis C certified nursing personnel available for employment within the VHA Network or through some external contract mechanism should the expansion of FTEs not be feasible. Developing and implementing this recruitment and training initiativecould be done for $1.5 million over two years.

Challenge #2 - Health Provider Education

- Public Sector Efforts Needed: The designation of "VA Hepatitis C Centers of Excellence" and the National Hepatitis C Symposium (June 3-4, 1999) are excellent examples of how VHA is seeking to educate its personnel. It appears that VHA is seeking to make sure information on hepatitis C is communicated to its health personnel on an ongoing basis.

- Private Sector Efforts Needed: ALF has been running an ad "Combating a Crisis" in numerous primary care journals. It is also using this ad in conjunction with mailings to primary care physicians through health departments. This ad, which provides succinct information for primary care practitioners about hepatitis C, can be easily adapted to be specific for VA primary care practitioners. ALF would be pleased to do this in consultation with VA hepatitis C leadership and have it distributed throughout the VA system.

ALF is currently exploring ways in which it could assist in training primary care practitioners through its nationwide network of chapters and their medical leaders, many of whom are involved in their local VISNNAMCs. There are numerous ways in which public and/or private resources can be used for this purpose.

Challenge #3 - Veteran Education and Outreach

Educational materials and outreach strategies must be employed to stimulate the vast reservoir of unmet needs among undiagnosed veterans with hepatitis C.

- Public Sector Efforts Needed: Ongoing communications between VHA and VSOs. Development of educational materials through the VA Hepatitis C Centers of Excellence.

- Private Sector Efforts Needed:

ALF is currently working with its chapters to develop these programs targeted to veterans:

- Meet the Researchers - ALF's educational series featuring leading liver specialists. Working with local VISNNAMCs, ALF plans to hold up to 36 symposiums the first year throughout the U.S. focusing on issues specific to veterans. These half or full dayconferences will be sponsored by both ALF's local chapters and National Office. The symposiums will provide veterans with access to current information on treatment and disease issues that might not otherwise be readily available.

- Support Groups - ALF chapters will be forming support groups targeted to veterans. Support groups provide a forum to share concerns about diagnosis and treatment, discuss coping issues and provide support from other veterans. These support groups also provide another opportunity for education as local health care providers are invited to participate by speaking at these meetings. Over the next year, ALF expects to form 30 support groups meeting monthly through local chapters. A health care professional will be hired to coordinate and facilitate each group.

- Outreach - ALF has developed cultural "blueprints" targeted to different racial and ethnic populations for hepatitisawareness. These efforts and materials need to be developed and implemented in culturally appropriate ways.

For all the challenges listed above, it is important that accountability mechanisms be established by the VA that include the following:

- performance measures for testing, diagnosis and treatment- performance measures for outreach and education- establishing a database to measure performance- annual reporting of results.

The hepatitis C liver disease problem facing veterans is not a one-year campaign. Instead, it will require a long-term commitment from the public sector and the private sector. It will also require a comprehensive use of different medical, psychosocial, and economic supports if it is to be successful in the long term. The ALF Veterans Hepatitis C Liver Disease Council represents the long-term commitment and unification of government and advocacy groups to face this epidemic.

ALF stand ready to work in collaboration with the VA and other in any public and private models to accomplish these goals. Again, we thank you for your leadership on these important matters.