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Message - July 8, 2001
The Grave Threat of HCV

By Kathy and Lusting, executive director of hepatitis C support project, Santa Barbara.

The 106th Congress ended in October with one major victory and one major setback. We got the first piece of major federal legislation with a title for hepatitis C virus (HCV). The HCV title is in the children's health care act of 2000 which often authorizes the Centers for Disease Control and Prevention (CDC) to establish national surveillance of chronic hepatitis C and education programs for health-care professionals and the public. The next step is to get Congress to give the CDC money specifically for the HCV surveillance and education program.

Within the same halls of Congress for Republican and Democratic leadership joined forces to develop the children's health care act, a planned national HCV Alert was dropped. The commerce committee and Surgeon General David Satcher had planned to send a letter to every American household alerting the public to the risk of HCV. Satcher had previously declared hepatitis C and epidemic and a "grave threat" "to the American public's health. But when push came to shove Satcher and the commerce committee backed down from sending the letter, saying it could not go out because there was no money to pay for the postage. As a result, what should have been a sincere effort at public education will probably remain on the Surgeon General's desk through the end of this presidential administration.

The letter experience -- and the HCV title in the children's bill -- is unfortunately characteristic of other federal responses to the hepatitis C epidemic by this administration. The food and drug administration has repeatedly postponed a huge blood look back program to notify people who had received the blood transfusions potentially contaminated with hepatitis C virus. The looked back was launched three years ago, but the original intent of the advisory committee on blood safety and availability remains only partially implemented.

There are several other examples of this neglectful pattern. The Secretary of health and human services HHS announced an HCV initiative in January 1998 that, in addition to launching the looked back, gave the CDC responsibility for general public education campaign on hepatitis C. The CDCs budgets in recent years have included roughly $1 million a year for public education on this disease. However, there is little evidence of any of their general public education efforts. A pilot public education program the CDC launched into cities Washington and Chicago and fiscal year 1999 was discontinued in fiscal year 2000 after spending only $70,000. And recent work plans have mentioned only education initiatives targeted to high-risk groups.

The department of Veterans Affairs (VA) announced a high profile initiative on hepatitis C in January 1999 in response to an estimated infection rate of 8 to 10 percent among veterans. (Note from Lloyd. Vietnam era veteran have a 65 percent infection rate). Congress followed by providing the VA an additional $350 million for hepatitis C testing and treatment in fiscal year 2000. While 179,000 veterans have already tested positive in the VA, the VA had stated it expected to treat only 9.750 of them in fiscal year 2000. As of the end the first half of the fiscal year 2000, only 1100 veterans had received treatment and only 39 million of its HCV funds were spent. Although the VA's commitment to this initiative seems sincere, its failure to implement it is disturbing.

The CDC also has responsibility for surveillance of infectious disease and for providing information on the incidence and prevalence of disease in the population. Despite the initiative announced that HHS Secretary in 1998, the CDC has continued to instruct the states not to report cases of chronic infection. In doing so, they have ignored recommendations for surveillance for the Secretary's own advisory committee on blood safety and availability and from the council of state and territorial epidemiologists. Instead the center has continued to use estimates of prevalence from data collected in 1991, before an accurate blood tests for HCV was available, and to rely on incident data from a few "sentinel counties". There is no national surveillance system that can accurately inform public health officials about the incidence of prevalence of this infectious disease in their communities.

I marvel at this administration's failure to notify the public or respond with an effective screening or treatment initiatives. An estimated 4 million Americans are infected with HCV today -- most of them infected before a blood test was available -- and at least 70 percent of these remain unaware of their illness. A disease that is four times as prevalent as AIDS, and that is projected within the decade to kill more people each year than AIDS, seems to me to be sufficient cause for major public education initiative.

The Secretary's advisory committee on blood safety and availability summed it up when it stated in a resolution adopted on Aug. 25th 2000:

"The committee believes that the public has not been adequately informed of the risk factors of HCV and approximately 4 million Americans may be infected with HCV, many of whom are unaware of their infection."

"The committee feels that this possesses a threat to the safety of the blood supply. Therefore, the committee recommends that the Surgeon General send a letter to all U.S. households, notifying the public about the risk factors for HCV and appropriate testing treatment options."

And on a state level, in the fall of 2000, Gov. Gray Davis signed California's first hepatitis C bill Polanco SB -- 1258. The Bills started off with a $7 million price tag to implement testing and education in the state of California. It was reduced to 5 million, and then went to Gov. Davis desk at 2 million. Gov. Davis reduced it to 1.5 million; with half going to veterans whom already have funds budgeted for hepatitis C. Another portion was given to the Department of Corrections to reproduce a report on hepatitis C.

Several years ago, the Department of Corrections gave back significant funds for hepatitis C because it had failed to use the monies. It is estimated that close to 50 percent of the states incarcerated are infected with hepatitis C. The states potentially infection will be lucky to see $500,000, which amounts to about 1 dollar a patient for testing and education.

According to the CDC, 1.8 percent or 500,000, of Californians have been exposed to the hepatitis C virus. Many of the states experts agree, along with insurance actuaries, that projected numbers from the CDC are low and that they are actually closer to four percent of the population who have been exposed to HCV or 1in 25, with 70 percent of the infected unaware they carry the disease. This author, along with other area public health officials, last spring participated in several meetings in Sacramento with the Department of Health Services in California on a hepatitis C strategic planning committee. This plan outlines how teaching and education shall be implemented with the state. This plan has yet to be put out into final draft form after almost one year.

In 2000, there were approximately 16,000 people on the liver transplant list in the U.S., with the majority of cases caused by complications of HCV. Only 4500 received livers. Experts predict, knowing the natural history of this disease that the number awaiting the new livers will triple over the next 10 years, with organ donations remaining the same. It is clear to this author that, with an approximately $25,000 price tag per patient and a 37 percent success rate for treatment, that sometimes includes difficult side effects, officials are slow to begin diagnosing patients. With no state or federal funds available, many County officials and public official departments find this overwhelming task to tackle. Patient advocates would like to see a more aggressive effort to educate the general public about risk factors in transmission routes, encouraging and providing free testing, and establishment of referral in case management services.

Last week, experts on hepatitis C converged in Santa Barbara for a daylong educational event targeting health-care providers. This event was organized by the back to life Hepatitis support project, with co-sponsors Santa Barbara city colleges continuing education department, Santa Barbara County public health and County alcohol drug and mental health services. Clearly the full arena of more than 100 shows the interest in magnitude of this disease's impact on our health-care system. Experts referred to the hepatitis C epidemic as a tidal wave off the coast of California.

Also last week was the first successful meeting of the hepatitis C task force, which was attended by representatives from impacted agencies, health-care providers, and community-based organizations and was held at the Santa Barbara public health department. Attendees listen to speakers from other organizations that have hepatitis C educational and testing models already in place in other parts of the state. The purpose of this task force is to set of a strategic plan modeled after the state Department of Health Services plan to implement testing, education, and management of hepatitis C into existing services.


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