December 10, 2004



Mr. Joshua Bolton

Director

Office of Management and Budget, Room 252

Eisenhower Executive Office Building

17th Street and Pennsylvania Avenue, NW

Washington, DC 20503



Dear Mr. Bolton:



On behalf of the undersigned organizations we are writing to urge you to include
increased funding for federal programs to address the viral hepatitis C (HCV)
epidemic in the President’s FY2006 budget proposal. The FY2006 budget
represents an opportunity for President Bush to provide leadership in mounting
an effective campaign against this, the number one blood-borne viral infection
in the country. We urgently request increased federal resources for hepatitis C
prevention, medical management, treatment and research.



As you finalize the President’s budget proposal for FY2006, we ask that you
consider the following critical funding needs to appropriately address the HCV
epidemic:

Include $40 million for the Centers for Disease Control and Prevention’s
(CDC) Division of Viral Hepatitis (DVH) in the President’s FY2006 budget
proposal to increase the ability of state and local health departments to
provide hepatitis C counseling, testing and medical referral; to implement
chronic hepatitis B and C surveillance systems; and to educate the public and
medical providers on hepatitis C;
Include an additional $50 million for the National Immunization Program’s
(NIP) Section 317 Public Health Grant Program in the President’s FY2006 budget
proposal to support hepatitis A and B vaccination of persons living with
hepatitis C and those at risk of infection;
Increase funding to the community health centers where a significant
proportion of HCV infected adults seek their primary care;
Increase funding under the Ryan White CARE Act to support additional case
management, provider education and the coverage of HCV drug therapies under
AIDS Drug Assistance Programs (ADAPs); and
Increase funding to support NIH’s Action Plan for Liver Research.



Currently, approximately 4-5 million Americans are infected with hepatitis C and
at least 2.7 million are chronically infected, nearly 3 times the number of
people with HIV/AIDS. In addition, an estimated 30,000 new people were infected
in 2003. Many individuals are unaware of their infection until decades later
when chronic liver disease develops. Further, approximately one-third of
persons living with HIV/AIDS are co-infected with HCV and complications from
liver disease are emerging as the leading cause of death among people with AIDS
in many communities. In total, chronic HCV is responsible for 40-60% of liver
disease and is the leading cause of liver transplants in the United States.
Hepatitis C currently causes approximately 10,000 deaths a year, and the CDC has
predicted that number will double without increased resources for counseling,
testing and medical referral services.



It is critical that Americans know whether they are hepatitis C-infected in
order mitigate disease burden and to prevent transmission. These include simple
steps like abstaining from alcohol use, exercising and maintaining a healthy
diet. There are effective pharmaceutical treatment options available as well.


Prevention
In 2001, the CDC published the National Hepatitis C Prevention Strategy, a plan
to protect the public’s health by preventing and controlling HCV infection;
enhancing health decisions by providing credible information on HCV; and
promoting healthy living through strong partnerships with national, state, and
local organizations in both the public and private sectors. The Division of
Viral Hepatitis (DVH) within the National Center for Infectious Diseases (NCID)
at CDC has not yet received sufficient resources to appropriately implement the
HCV Prevention Strategy, and in fact has received level funding or budget cuts
annually since the Prevention Strategy was published in 2001. We appreciate the
difficulty of balancing public health funding priorities as our nation faces
many competing challenges but delaying action on this epidemic will cost this
nation severely in both human and economic terms.



DVH is currently provided $17.5 million to address hepatitis C, of which
approximately $4 million is used to fund the hepatitis C coordinator program.
This program provides funding to states to support a hepatitis C coordinator,
who is responsible for increasing hepatitis C awareness and education and
working with other public health programs to integrate hepatitis services into
existing public health settings. The average funding award for the coordinator
position is $77,000, which is precious little above personnel costs, leaving
little to no money for the provision of services. Unfortunately, due to the
funding rescissions by Congress, DVH has lost funding for the third year in a
row and will be unable to provide any increases to the coordinator program in
FY2005, which will significantly impact the public health prevention and control
efforts in states and localities across the United States. We urge you to take
action before the costs of chronic liver disease, including
liver transplantation, overwhelm our nation’s limited health resources. The
DVH needs, but lacks, basic infrastructure to monitor disease trends and the
impact of prevention on disease control.



The National Immunization Program provides discretionary funds to states to
support immunizations through the Section 317 Immunization Grant program. Some
states have used these funds to support the vaccination of high-risk adults
against hepatitis A and B. However, there are no dedicated funds to assist
states in closing the gap between the adolescents and children, who are all now
required to be vaccinated against hepatitis B, and the adults who remain
unvaccinated and at high risk.


Treatment
While there are no dedicated funding streams for medical management and
treatment of hepatitis C, low-income patients can and do seek services at
Community Health Centers (CHCs). We applaud your continued commitment to
increasing resources for CHCs. Fortunately, some low-income individuals
co-infected with HCV and HIV can seek services through the Ryan White
Comprehensive AIDS Resources Emergency (CARE) Act and because of that, we urge
you to provide increased resources for the CARE Act, particularly the state AIDS
Drug Assistance Program (ADAP). Currently only 20 state ADAPs cover the HCV
treatments that are significantly effective in combating some strains of HCV.
Increased resources to the CARE Act are needed to improve provider education on
HCV medical management and treatment, to cover additional case management for
patients undergoing treatment, and to allow more states to add HCV therapies and
HCV viral load tests to their ADAP formularies. Access to available treatments
and treatment support services are critical to combat co-infection morbidity.


Research
Finally, research is needed to increase understanding of the pathogenesis of
hepatitis C, improve HCV treatments that are currently difficult to tolerate,
develop clinical strategies to slow the progression of liver disease among
persons living with HCV, and develop a vaccine to prevent HCV infection. The
Liver Disease Branch, located within the National Institute of Diabetes and
Digestive and Kidney Diseases (NIDDK) at the National Institutes of Health
(NIH), has developed an Action Plan for Liver Disease Research. We encourage
full funding for NIH to support the recommendations and action steps outlined in
this Action Plan for Liver Research.



A strong public health response is needed to meet the challenges of this
infectious disease impacting over four million Americans. We welcome the
opportunity to work with you and your staff on this important issue. Please
contact Laura Hanen at the National Alliance of State and Territorial AIDS
Directors at 202.434.8091 if you have any questions or need additional
information.



Sincerely,



List in formation



The AIDS Institute, Washington, DC

American Academy of HIV Medicine, Los Angeles, CA

American Social Health Association, Research Triangle Park, NC

Hep C Advocate Network, Inc. (HepCAN), Longview, TX

Hepatitis C Caring Ambassadors Program, Oregon City, OR

Hepatitis Education Project, Seattle, WA

Frontline Hepatitis Awareness, Washington State

National Alliance of State and Territorial AIDS Directors, Washington, DC

National Coalition of STD Directors, Washington, DC

Positive Health Project, New York, New York

Roche Pharmaceuticals, Nutley, NJ

Title II Community AIDS National Network, Washington, DC

Treatment Action Group, New York, New York



cc: Barry Clendenin

Norris Cochran






Sandra Tara Balduf (Ane)

Frontline Hepatitis Awareness

Support for patients and educational materials

http://frontline-hepatitis-awareness.com

1-866-Hep-GoGo 866-437-4646




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