Coalition Press Release
November 2006

HARD SELL FOR MAJOR DEADLY DISEASE

Across the aisle at a crowded festival, a voice calls out to the passers-by.

“Do you know the risk factors for hepatitis C?”

Amid the t-shirt vendors, political booths and the aroma of food concessions, it’s a hard sell indeed.

“I do know,” says one man. “Let’s see...first, no unprotected sex, second, don’t share body fluids, third...”

“I think you need this card,” says Beverly Foust, and hands him a list of hepatitis C risks, for which sex is just about the least likely.

Foust is not your typical 55-year old grandmother. An RN who works part time at a drug detox clinic, her major job is chairing the Arizona Hepatitis C Coalition.

She also lives with hepatitis C, which she has had for nearly 20 years.

“How did you get it?” asks another person.

“I’m not sure,” she says, explaining that hepatitis C typically takes 15 or more years before there is enough liver damage to show symptoms. “It’s a blood-borne pathogen, so it could have been from a needle stick, or some other way. I used to wonder about it, but after a while, I decided that learning how to live with it is the important thing, not worrying where I got it.”

Before the AIDS epidemic of the early 1980s, nurses were not required to wear gloves, or even allowed to wear them except around patients with certain infectious diseases. But she does not rule out personal risks either, such as a small tattoo, a shared razor or other blood-to-blood contact.

Hepatitis C, formerly known as non-A, non-B hepatitis, was first recognized in the early 1970s.  The first antibody test for it came in 1989, and it was not until 1992 that a way was found to screen the blood supply for the virus.

November is Hepatitis C Awareness Month, and the proclamation by Governor Janet Napolitano is proudly displayed as the centerpiece of the coalition’s exhibit.

          Seeing the display, another passer-by proudly announces “I can’t get it. I was vaccinated.”

“There is no vaccine,” says Foust, handing out another card, pointing to the coalition’s website address www.hepcaz.net   “What you were vaccinated for is hepatitis A and B.” She turns to another coalition member and says “I think we need to put that on a sign.” It is a common response.

The next visitor has yet another variation. “I had hep A and B as a kid, so my doctor says I’m immune to hepatitis C.” Those at the table shake their heads. Hepatitis simply means an inflammation of the liver. Hepatitis A, B and C are unrelated diseases. Of the three, C is the hardest to treat, and often fatal. Many people believe that A, B and C are just progressive forms of one disease.

About 120,000 people in Arizona have hepatitis C, and only about half of them know it. Over 65,000 Arizonans have tested positive for the disease so far in just five years of offering screening, according to the Arizona Department of Health Services.

The Arizona Hepatitis C Coalition came into existence three years ago, and is a consortium of about two dozen non-profit and governmental organizations, along with many individual members. Some members have hepatitis C, some have affected family, and all work to help those affected by the virus.

Some, like founding member Christina Hurst (left**), a social worker and former ADHS staffer who now works on a Washington state program, managed to beat the disease. Others, like Foust, have gone through repeated unsuccessful treatments and remain hopeful. Drug treatment is expensive and unpleasant, and only about half of those who try it, beat back the disease. In some, the treatment will be permanent, and in others the virus may spring up again months later.

Hepatitis C is now the leading cause of liver transplants in the United States. Of those infected, about one-fifth can beat it on their own. About the same number will eventually develop liver cancer. A transplanted liver is not a “cure,” since the new liver will become infected as well, but will usually buy a decade or more of life.

Many of the coalition members also deal with HIV/AIDS, by far a better known disease. About 30% of those with HIV also have hepatitis C, which presents treatment challenges and much higher risks. Of those infected with HIV from unsterile needles, current federal estimates are that 90% have hepatitis C.

          “It’s so easy to prevent, and so hard to treat” says Foust. “This is why we are spending so much time educating people about the risk factors.” The HIV virus is a fragile one, and the hepatitis C is many times more infectious. It can exist for much longer outside the body, and at a wider extreme of temperatures.

People with hepatitis C face stigma, and are often afraid to admit they have the disease. Like those with HIV, some are needlessly afraid to shake hands with, hug, or eat at the same table with a hepatitis C infected person. Tales of such ignorance pop up frequently at coalition meetings, and members usually take them as a sign of how much work still needs to be done.

Living with hepatitis C is another important concern. Avoiding alcohol is the first rule. Another is finding out how each prescription drug, over-the-counter medication, vitamin or mineral supplement affects the liver. Some foods are better than others. “It is so important that people know the risk factors, and get tested.” says Foust. “Knowing you have the disease and making a few life style changes can help prevent the progression and the  spread of the disease.”

Not all coalition education is aimed at the public. Hepatitis C is a major concern for police and fire department people who run the risk of being stuck with infected syringes. Captain A.G. (“Sonny”) Leeper of the Albuquerque Police Department, who lectures on clean syringe access programs, says that the average accidental needle stick costs police departments about $30,000 per person in prophylactic hepatitis C and HIV treatment, not to mention the cost in anxiety to police personnel and families.

Though Pima County Health Department has a syringe exchange program, it is the only county in Arizona to offer this. Though the coalition is not interested in running a syringe access program, Leeper’s training lecture is part of their educational program for police, fire departments, student nurses and pharmacists. Arizona, like many states, does not require a prescription for clean needles, though currently about 90% of pharmacies will not sell to those who they suspect may use illegal drugs.

Victor Pawlak, 57, an ASU graduate student with a long history in public health education, coordinates that program. “There is no typical person with hepatitis C,” he says. “Older people have it from previous blood transfusions and operations. Vietnam veterans have it from battlefield injuries. Hemophiliacs have it from donated blood. So do drug users who share needles, and people who get prison tattoos.” The fact is that hepatitis C exists across all incomes, ethnicities and ages. “The more people realize this,” he says, “the less stigma there will be, and the more progress we will make.”

Still, it’s a hard sell. One small non-profit group, along with a desperately underfunded Hepatitis C Program at Arizona Department of Health Services, is trying to make headway against what they call the state’s biggest “silent epidemic.”

Hepatitis Facts:

Hepatitis A: Primarily spread by fecal matter, or fecal-oral. Many get it, few die.

Hepatitis B: Mostly spread by fluids, sex, blood, food. Can be chronic and serious, but treatable.

Vaccines are available for hepatitis A and B, and these are recommended for those with hepatitis C.

Hepatitis C: Spread blood-to-blood only. No vaccine available. Treatment is effective in under 50% of cases. Fatal in 20-25% of cases.

 
HEPATITIS C FACTS

 Who Has It?
Over four million Americans have hepatitis C, including an estimated 120,000 Arizonans of every age, income level and ethnicity. About 170 million worldwide are infected. Those with immune compromised systems are at higher risk due to other diseases, lack of proper nutrition, poor access to medical care.
 

 How is is Transmitted?
Any blood-to-blood contact may transmit hepatitis C, by an open wound, needle stick, using unsterilized tattoo or piercing equipment, sharing razors, etc. Sexual contact must involve blood-to-blood in some way. Sharing toothbrushes may be a risk factor. The virus in tiny amounts of blood may stay alive for hours on a doorknob or other object.

 
Know The Risk Factors:
- Received blood, blood products and/or organs prior to 1992
- Shared items to inject or snort drugs
- Received kidney dialysis treatment
- Born to a hepatitis C positive mother
- Needle stick exposure
- Contaminated tattoo needles and ink, body piercing equipment
- Had sexual activity that involves contact with blood
- Veterans (especially Vietnam War Veterans- 65%)
- Shared personal care items with an infected person

 
How to Get Tested:
Tell your doctor if you think you might be at risk. He can order a simple blood test.  Health departments in every county except Maricopa do free testing. In Phoenix,Terros offers free testing for those at high risk. Call 602-685-6086 for more information.

How to Get Treated:
Hepatitis C treatment is expensive, and not all those who have it are good candidates for treatment. Your insurance may cover all or part of this. AHCCCS covers treatment if your doctor recommends it. Those who are co-infected with HIV/AIDS are usually covered.

 
Contact:

Arizona Hepatitis C Coalition  (www.hepcaz.net)
P.O. Box 48
Phoenix, AZ 85001
(602-769-1004

Volunteers are needed!

also

Arizona Department of Health Services
Hepatitis C Program
http://www.azdhs.gov/www.azdhs.gov/phs/oids/hepc/index.htm

**Photo:  Arizona Hepatitis C Coalition founding member Christina Hurst, dressed as a blood borne pathogen for Halloween 2006. Chris, who now works in Washington State, won the Clallam County Health and Human Services costume contest for her design.