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ACTION ALERT

 

 

 

Urge Your Members of Congress to Fund Hepatitis C Prevention In Their Appropriations Request Letters

 

 

 

 

Earlier this month, President Bush started the Fiscal Year 2008 appropriations process with the release of his budget proposal.  The President's FY2008 budget flat funds the CDC Division of Viral Hepatitis (DVH).  Silence on this issue will result in further cuts to an already small hepatitis C (HCV) allocation of $17.6 million at DVH.  A small increase of $11 million can make a big difference.

 

 

 

 

In the next few weeks, all Senators and Representatives will write their “programmatic appropriations request letters,” which asks members of the Appropriations Subcommittees (who put together the federal funding legislation) to support funding for their priorities. These letters play a crucial role in educating key lawmakers about the importance of hepatitis-related public health programs.

 

 

 

 

 

The first thing you can do this year to fight for HCV funding is to contact your elected representatives and ask them to include funds for hepatitis C prevention programs in their programmatic appropriations request letter. Please take a few minutes to make these important phone calls!  We can do this. Our request is reasonable.  The infrastructure exists for the funds to be distributed and spent wisely by our state Adult Hepatitis Coordinators.  We can make an impact, but only with action from you.

 

 

 

 

 

How you can help:

 

 

How: Contact your Senators and Representative today!  We have just three weeks left to educate House Appropriators about the inadequate funding for hepatitis C programs. Whether you speak to this person live or leave a message, tell them:

 

 

 

“My name is ____________ and I live in City/State. I am calling to urge Representative/Senator________________ to include funding for hepatitis C in his/her Fiscal Year 2008 appropriations request letter.  Below is sample language that your representatives can use when writing their request letters.  OFFER TO EMAIL OR FAX IT TO THE STAFF PERSON.

 

 

 

 

When: Right now!  Members of Congress need to hear from you by March 16 for your U.S. Representatives and by April 13 for your two U.S. Senators.

 

 

Sample Language:

 

 

FY08 Appropriations Request for Hepatitis C

 

 

 

 

Mr. Chairman, as your Subcommittee begins work on the Fiscal Year 2008 appropriations bill for Labor/HHS/Education, I want to call your attention to the very real needs of Americans living with hepatitis C.  An estimated 3 to 5 million Americans have been infected with the hepatitis C virus (HCV) making it the most common, chronic, blood-borne disease in the United States .  At least 2.7 million people in the U.S. are chronically infected with HCV.  Many people with chronic hepatitis C are unaware that they are infected because HCV is often asymptomatic until advanced liver damage develops.  I respectfully request that you include the following language in your programmatic appropriations requests:

 

 

 

CENTERS FOR DISEASE CONTROL AND PREVENTION (CDC)

 

 

Hepatitis – The Committee is concerned that an estimated 75% of the 3 to 5 million Americans with hepatitis C are unaware of their condition, and therefore urges a campaign of public announcements in collaboration with national health organizations for appropriate screening and medical follow-up of target populations. The Committee also recognizes increasing rates of hepatitis A and B infections among select adult populations, and the alarming rate HIV/HCV co-infection.  The Committee includes in the appropriation a $11 million increase to specifically support the implementation the National Hepatitis C Prevention Strategy.   The Committee urges that this funding be used by CDC/DCH to expand the capability of state health departments, especially to enhance resources available to state Adult Hepatitis Coordinator and to expand HCV screening initiatives.

 

 

 

 

HEALTH RESOURCES AND SERVICES ADMINISTRATION (HRSA)

 

 

Bureau of Primary Health Care

 

 

Consolidated Health Centers – The committee recognizes the important role of the consolidated health centers in caring for people living with or at risk for hepatitis C.  The committee encourages the Bureau of Primary Care to increase health centers' capacity for delivery of medical management and treatment of HCV by implementing training and technical assistance initiatives, so that health centers are able to increase hepatitis C counseling and testing, and medical management and treatment services to meet the healthcare priorities of their respective communities.

 

HIV/AIDS Bureau

 

 

Ryan White Modernization Act – The Committee is concerned that at least 25% of persons living with HIV are co-infected with HCV, and that HCV-related complications are the leading cause of death among persons with HIV/AIDS.  The Committee requests that HRSA provide more guidance to grantees on providing services to co-infected individuals, and more education and training to medical providers treating HIV/HCV co-infected persons.

 

 

NATIONAL INSTITUTES OF HEALTH (NIH)

 

 

National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK)

 

Action Plan for Liver Disease Research –The Committee is pleased that NIDDK, in collaboration with leading scientific experts, has prepared and published a comprehensive Action Plan for Liver Disease Research.  The Committee urges that steps be taken to implement the plan immediately and submit a report to the Committee prior to next year’s hearings detailing accomplishments to date and future plans with a specific timeline for implementation of the balance of the plan.

 

 

 

 

National Institute of Mental Health (NIMH)

 

 

Hepatitis – The Committee urges NIMH to conduct and/or facilitate research to explore the etiology and effective therapeutic management of neuropsychiatric symptoms and disorders associated with chronic hepatitis C and interferon-based antiviral treatment.

 

 

SUBSTANCE ABUSE AND MENTAL HEALTH SERVICES ADMINISTRATION (SAMHSA)

 

 

Center for Substance Abuse Treatment

 

 

Hepatitis – The Committee recognizes that states receiving HIV set-aside funds within their Substance Abuse Prevention block grants are well positioned to offer viral hepatitis prevention services to high risk clients, and encourages set-aside dollars to be used to support such activities.  The Committee recognizes that most new HCV infections are related to drug use and asks SAMHSA to encourage all grantees to incorporate viral hepatitis prevention services such as hepatitis C screening into existing drug treatment programs.

 

 

 

  
"Hepatitis Breakthrough at University of Washington "   
Seattle Times, (01.23.2007)   Warren King

 

After making headlines last June as the first scientists to isolate human liver stem cells, the ancestors of all liver cells, Dr. Nelson Fausto and colleagues at the University of Washington have used those cells to devise a new way to grow hepatitis C virus (HCV) in the laboratory. The advancement is considered an important step in the quest for a vaccine and improved treatment for the blood-borne virus, which infects around 170 million people worldwide.

While other scientists have grown HCV using cancerous liver cells or using a virus from a patient with a rare case of rapidly advancing hepatitis, Fausto's team was able to grow HCV in normal liver cells, keeping the virus reproducing for at least two months. This length of time enabled HCV to infect liver cells, where it does major damage.

"We'll be able to better see what damage is done to cells, and it will provide a way to test antiviral agents… and help develop a vaccine," said Fausto.

HCV becomes chronic in the majority of patients. After 20 to 30 years, one-fifth of HCV patients have scarring of the liver that can lead to cancer. HCV is the leading reason for liver transplantation.

The new lab culture took about four years to perfect, said Fausto. The researchers injected the liver stem cells into a culture with HCV genetic material. The viruses then reproduced into the culture, the culture itself was mixed with more cells, and those cells became infected as well. The team also mixed the blood of patients infected with different HCV strains into the culture of liver stem cells. Again, HCV thrived and replicated.

The next step is to determine whether laboratory animals can be infected with the laboratory-grown HCV, further establishing the viability of the culture as a way to study the virus, said Fausto.

The study, "Hepatitis C Virus Replication in Transfected and Serum-Infected Cultured Human Fetal Hepatocytes," was published in the American Journal of Pathology (2007;170:478-489).

 

 

 

Barb Wood, Editor

 

Michigan HIV & STD News

 

 

Midwest AIDS Prevention Project

 

 

home office: 734-973-6066

 

fax: 734-477-5082

 

www.mihivnews.com

 

bwood@mihivnews.com

 

 

 
Study: Health Care Provider Communication and HCV Patient Adherence

Are you happy with your medical care for hepatitis C?

Help us find out how your doctor's communication might affect your care and enter to win a $25 gift card to any Target store by taking a brief, anonymous online survey.

This survey will ask you questions about how you follow your healthcare provider's advice and how you feel about your health care provider's communication.

The data you provide will be recorded anonymously and your participation and responses will be held in the strictest confidence. By University regulations, this informed consent statement will be filed separately from your response, so no one will know that the responses you provide are yours. The study involves no foreseeable risks or harm to you.

Although the study will not benefit you directly, it will provide significant insight into how healthcare providers must communicate with hepatitis c patients in order to ensure better outcomes for their patients. You can ask questions about the research study or about being a participant in the telephone interview component of this study at any time by calling me, Emily Leonard, at 732-278-9084 or via e-mail at s0561879@monmouth.edu. In addition, for any research questions, please contact Deborah Smith of the Monmouth University Institutional Review Board (IRB) by phone at (732) 263-5726 or via e-mail at irb@monmouth.edu.

To take this survey click here:  

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Caregiving: Lawford says get tested -- 3

By ALEX CUKAN
UPI Health Correspondent

ALBANY, N.Y., Jan. 4 (UPI) -- Many don't get tested for hepatitis C, or HCV, because of the stigma of the way many contract the disease -- illegal drugs, sex with more than 10 partners, tattoos.

But there are other ways to catch the disease.

Because HCV is transmitted blood-to-blood, a person can also be infected by: blood transfusion, blood products, or organ transplant prior to HCV screening in 1992; unsterilized dental equipment that might contain blood; shared personal equipment that may contain blood like a razor and recreational sports injuries.

But judging from the mail this series of columns on HCV has generated, quite a few people in healthcare are insensitive, rude or downright insulting when a patient discloses he or she has HCV.

No one knows better than I that someone can get hepatitis via unexpected routes. In college, I was part of a group of seven students who served in student government at the University of Buffalo. We were very close. We saw each other every day and spent our evenings and weekends together.

Rick said he was tired a lot and not feeling well for most of our senior year. It slowed him down, but he didn't miss school or any big event. But who wasn't tired?

Rick was checked by doctors and nothing was found; his condition was chalked up to the rigors of applying to law school. He did very well on the LSATs and was accepted to Georgetown Law School.

When he went to Washington in the fall, he wrote me a letter each week and he didn't complain much about feeling ill. That next summer I saw him several times and while he looked skinnier, he seemed OK. It was at spring break of his second year in law school that I was shocked to see that he was very thin and looked jaundiced. Something was clearly wrong.

He was later diagnosed with liver cancer. Rick died the next spring. Rick had no risk factors for HCV of hepatitis B.

While many have said that baby boomers were party animals and "everyone was experimenting with drugs and alcohol" back then, our little group did not. We did not take drugs, did not have sex and no one had a tattoo. We drank a few beers and ate potato chips in Rick's basement for his end-of-semester party twice a year. His parents and grandparents were upstairs. Looking back, we seem to have bypassed much of the excesses of the '60s and '70s. What we did not understand is why someone age 23 would die of liver cancer.

Rick might have had hepatitis B or C -- both can lead to liver cancer, but my guess is was hepatitis C. He had a summer job in the county medical examiner's office and it's my guess he had some contact with contaminated blood. This was before AIDS and universal precautions and before HCV was confirmed in 1988.

But it really doesn't matter how a person gets infected; once infected treatment should be sought -- because you can die from this.

Christopher Kennedy Lawford had risk factors for HCV, which he details in his memoir, "Symptoms of Withdrawal: A Memoir of Snapshots and Redemption."

The 51-year-old actor and author tested positive for HCV in 2001 some 15 to 20 years after he had been infected -- the disease can lie dormant for a couple of decades.

He is sharing his experience of being diagnosed and successfully treated for HCV as part of a national education campaign called Hep C STAT! for Stop, Test And Treat. The campaign encourages individuals to stop and consider their own risk factors, get tested and, if infected, talk to a liver specialist about available treatment options.

Lawford suggests getting tested if a person has a risk factor, but a reader who leads a support group for people with HCV thinks everyone should get tested.

I agree. Since it is believed that the transmission of HCV may be possible through the inhaling of illegal drugs such as cocaine and crank when straws are shared among users, it is possible that a one-time use of cocaine in the 1980s could cause an infection 20 years later.

Although the majority of cases of HCV are believed to be contracted through illegal drug use, sex and tattoos, it doesn't really matter how a person gets infected, it matters that they get treatment and that they get treated with dignity and respect.

There wasn't much treatment for Rick, but today those with HCV have options.

 
 
Hepatitis C Motivation
& Well-Being Study
 
Free Press editorial writer and columnist Jeff Gerritt has been examining the worsening state of health care in Michigan's nearly 50 prisons for months. Medical and mental health care in prisons costs taxpayers $280 million a year, but misdiagnoses, delayed treatment and a host of other problems plague the system, in some cases turning prison stays into death sentences.

Depending whether you believe the state or outside experts, Michigan prisons hold 7,000 to 18,000 inmates infected with hepatitis C. That's 14-40% -- and most of them don't even know they have the disease.

Contagious and potentially fatal, hepatitis C attacks the liver. The prison epidemic affects everyone. Practically all of those infected -- more than 95% -- will go home, carrying their infections and health problems with them, and in some cases spreading them. As a public health problem, the level of hepatitis C in the prison system demands the attention of not only the Department of Corrections but also the Department of Community Health and the Legislature.

Lawmakers, however, have made a bad problem even worse. They cut most of the $5.9 million that Gov. Jennifer Granholm requested in 2004 to test and treat hepatitis C in prisons, and this year whacked the funding altogether. By not routinely testing for hepatitis C, the state is failing to meet U.S. Centers for Disease Control guidelines.

"They don't test regularly enough to find people before they have a permanently damaged liver," said David Santacroce, a University of Michigan law professor who filed a class action suit in 2003 on behalf of infected inmates. "We're seeing more and more cases of people who are too sick to be treated, and they're going to die.

"It's a death sentence."

Up to 40% of the nation's prisoners have hepatitis C, compared to 2% of the general population. The infection is spread through blood, and can be passed by needles shared to inject drugs or in tattooing, through unprotected sex and, before blood screenings began in 1992, by transfusions.

Truth be told, prison administrators don't want to know everyone who has hepatitis C, because that would pressure them to treat more inmates. Drug therapies with interferon and ribavirin cost more than $10,000 for each patient, though not every infected prisoner needs them. Still, the number of inmates getting drug therapies in Michigan prisons is ridiculously low -- only 125 inmates enrolled this year. Hundreds, possibly thousands, more need it. Left untreated, the only option is a liver transplant, which costs about $250,000 and is not done in Michigan prisons.

Prison officials say they treat everyone identified as needing it. The department regularly evaluates 2,500 inmates known to have hepatitis C, said spokesman Russ Marlan. Still, medical records and lawsuits show dozens of cases where inmates were denied testing or treatment or not even notified that they had the disease.

In one case handled by Santacroce, inmate Jeffrey Muller, now dead, was taken off a liver transplant list in 2001, after he supposedly tested positive for marijuana. But law students tracked down Muller's urine sample and, using DNA, found that the sample was not Muller's.

Inmate Lionel Stewart, 54, serving 35-75 years for armed robbery, is another example of the oke-doke inmates say they get when trying to get treated. A college graduate, Stewart never made it to law school because he got hooked on heroin and robbed to feed his habit. He's up for parole in two years.

Stewart said that his levels of ALT -- an enzyme produced in higher amounts when the liver is inflamed -- were high enough early this year to qualify for drug therapies, but then the department stopped testing him. Another prison doctor, he said, is trying to get him in treatment.

"She said that, if I don't get it, I'll die," Stewart told me last week in the visiting room of Deerfield Correctional Facility in Ionia.

Another Ionia inmate, Randy Rodgers, 46, who's serving 7 to 20 years for home invasion and breaking and entering, said doctors predict he will die in two years from hepatitis C, which he may have contracted from injecting drugs or tattooing more than 20 years ago. Rodgers has been in and out of jail and prison six times, all for nonviolent offenses related to alcohol and drug abuse.

Rodgers has undergone two unsuccessful treatments in Michigan prisons for hepatitis C and wants to try a low-dosage drug therapy, but he said prison administrators wouldn't permit it.

"I've got nothing to lose," Rodgers said. "If I die, I die."

Rodgers is also trying to get a medical parole and ought to get it, especially considering his nonviolent record.

No doubt, prison medical administrators have a tough job, trying to contain an epidemic without enough money. Still, Michigan's prison system should at least routinely test all high-risk inmates, especially injection drug users, and treat those with life-threatening symptoms. Blood tests for hepatitis C cost only $35.

"Thousands of people in prisons are left to die without treatment," said Dr. Bennett Cecil of Louisville, Ky., a national expert on hepatitis C in prisons. "Cirrhosis of the liver is just as deadly as breast cancer, and we don't say we're not going to pay for that."

The prison system could be the spot where the state starts to get a handle on hepatitis C by testing and treating inmates before they get out and return to their communities. But that's not going to happen with policies that are more focused on hiding than healing.

JEFF GERRITT is a Free Press editorial writer. Contact him at gerritt@freepress.com or 313-222-6585.
 
New Hepatitis C Support Group Meeting in Greater Detroit
August 21, 2006.
 
Beginning September 12, 2006 a new Hepatitis C Support Group meeting will be held in the Detroit suburb of Huntington Woods Where: Huntington Woods Public Library & Cultural Center (Friends Room) Address: 26415 Scotia When: 7 - 8:30pm Info: 248-489-5400 or www.liverfoundation.org/michigan.