Lawfords comments re HCV

[Guest guest]

This is an excellent letter that a friend shared with me that I wanted to share with all of you. She wrote to the reporter of the story. If you have thoughts on what she wrote please share them. I will make sure that she gets them. Please write the reporter your thoughts as well.

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Sent: Saturday, December 30, 2006 2:30 PM

Subject: Lawfords comments re HCV

Dear Cukan,

I am so tired of hearing about IV drug use and sexual transmission as the main modes of transmission for HCV.

It is no wonder that more people aren't tested and those that are positive keep their condition a secret.

I hold a support group in a small rural town in upstate New York. People with HCV are afraid to be open about their disease for fear of discrimination and stigma. One local doctor informed a woman's husband about her condition before informing her--he contacted her husband to tell him his wife must have been using drugs or sleeping around because that was the only way she could have gotten the virus. When she came to my group she was distraught as she had done neither.

As long as efforts to raise awareness re HCV consist of telling people that if they used drugs, had more than 10 sexual partners (what about 9?), tattoos or the only really mainstream acceptable route -- transfusions --- they might be at risk; the majority of people will continue to consider HCV a lowlife disease that they can't possibly have.

I have trouble accepting that the average citizen does not know what only blood borne means. I rarely hear mention of all the other methods of transmission if a virus can only be contracted through blood. It's much easier to continue to stigmatize the virus by mainly connecting it to unacceptable practices than explaining what blood to blood transmission means.

Veterans have had to fight for anyone to even entertain the idea that immunizations could have given it to them. People who have no idea how they got the virus aren't offered the possibility of medical or dental procedures prior to knowing about sterilization for more than bacteria. Plasma products that aren't whole blood such as injections for RH factor are never mentioned but are possible transmission routes.

Most knowledgeable people don't consider sex a main route of HCV but as time passes I've noticed that in anecdotal stories such as Lawfords sex seems to have become a known route of transmission.

How can we say the methods most mentioned are the main methods and then in the same breath say that there are more people walking around with the virus that don't know they have it than those that do?

I'm suggesting that screening for HCV become part of a routine health exam.

I can already hear the reaction about how that will raise our health care costs not the reaction that knowing and not spreading will help contain our health care costs. We already know that through no ones fault it was in our blood supply for years, being passed on in ways no one ever anticipated or understood until quite recently. Now that we know why don't we do more than ask everyone to look back over their lives and figure out what they might have done to expose themselves and then try to remember to get checked for something they don't even have symptoms of.

If you're still reading this diatribe thank you,

Yours' in good health,

Lillian

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Caregiving: Lawford says get tested -- 1By ALEX CUKANUPI Health Correspondent ALBANY, N.Y., Dec. 28 (UPI) -- Actor and author Kennedy Lawford wants people to know -- especially his fellow baby boomers -- that they may be at risk for hepatitis C virus, or HCV, even if they've only had a few snorts of cocaine.

"If you fall in any of the major risk factors -- illegal drug use, blood transfusion(s) before 1992, 10 or more sexual partners, dialysis or have had a tattoo -- you should get tested for hepatitis C because you are not going to know by the way you feel," Lawford told UPI's Caregiving.

"There are a lot of people who didn't think they did anything particularly risky who are at risk for hepatitis C -- you share a dollar bill to snort a line of cocaine or get a tattoo -- but there are some 4 million people estimated with hepatitis C and 70 percent don't know it."

Lawford, perhaps best-known as having played the character Charlie Brent on the ABC-TV soap opera "All My Children" in the early 1990s and as the nephew of President F. Kennedy, was diagnosed with hepatitis C in 2001. He details the long list of illegal drugs he took from age 13 to 30 in his book "Symptoms of Withdrawal: A Memoir of Snapshots and Redemption," now out in paperback. He was treated and is healthy today. He calls himself one of the lucky ones.

It is estimated that most chronic HCV infections are contracted through transfusion of unscreened blood or via injected drug use, according to the CDC.

"You hear about hepatitis C and you think Pamela and it's one of those rock 'n' roll diseases and that it can't happen to you," Lawford said.

But HCV is the most common chronic infectious disease in Europe and North America, affecting an estimated 170 million people worldwide. It is transmitted by blood-to-blood contact, according to the Centers for Disease Control and Prevention in Atlanta.

However, studies have shown that the use of needles and syringes is not the only drug-related risk factor for HCV.

A study in New York City, published in 2001 in the journal Substance Use & Misuse, found a higher-than-expected prevalence of hepatitis C infection among non-injecting drug users.

In one study, 17 percent of the subjects who denied a history of injection drug use were found to be infected with HCV compared to a 2-percent infection rate in the general population. Among women from one of the study sites in East Harlem who reported use of non-injection heroin, the rate of infection was as high as 26 percent.

"If hepatitis C can be transmitted through the sharing of non-injecting drug paraphernalia such as straws or pipes, we need to include this information in public health messages targeted to this population," said Dr. Alan I. Leshner, director of the National Institute on Drug Abuse.

In another study in 2001, published in the American Journal of Public Health, researchers at the University of California at San Francisco found low-income women between the ages of 18 and 29 in San Francisco were infected with HCV at a level almost 2.5 times higher than the HCV infection rate for the general population in the United States.

"San Francisco had the highest HCV infection level, 4.3 percent -- nationally the level is 1.8 percent. Injection drug use is the strongest risk factor, but we were surprised to find that co-infection with herpes simplex virus type-2, or HSV-2, was also significantly associated with hepatitis C infection," said lead author A. Page-Shafer. "This suggests that infection with HSV-2 may be a co-factor for sexual transmission of hepatitis C."

One of the problems of treating hepatitis C is that the infection can be dormant for decades and people may not realize that something they did in their 20s can make them sick when they are in their 50s.

"Hepatitis C can stay dormant in your blood and liver before you develop any symptoms. I was tested for hepatitis C in 2001, but that might have been 15 or 20 years after I had contracted the illness," Lawford said.

"It's my intention to make people aware that a simple $40 blood test is a lot better than a having to get a liver transplant. This is a life-threatening disease, but there is a cure.

"But you must be tested -- people have to be proactive and ask for the test. I would be dead if I had not been tested."

Next: Hepatitis C treatment.

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Cukan is an award-winning journalist, but she always has considered caregiving her real work. UPI welcomes comments and questions about this column. E-mail: consumerhealth@...

http://www.upi.com/ConsumerHealthDaily/view.php?StoryID=20061228-124229-7388r