executive director of hepatitis C support project, Santa
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
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
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.