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FRED DE SAM LAZARO: Denise Carter may look healthy, but she’s battling a dangerous disease called hepatitis C. For years before she knew it the virus was scarring her liver with cirrhosis. Now, she may need a liver transplant within 10 years. Hepatitis C has left her too exhausted to work.
DENISE CARTER: I sleep as much as an infant. Fatigue is a huge problem for me, so I sleep anywhere from fourteen to sixteen hours a day. That’s naps and then twelve hours a night–twelve to fourteen. I need to look at my energy like a bank account, so if I have something planned next week, I need to start gathering my energy and resting and resting up for that activity.
DOCTOR: (examining Denise) Is there any tenderness here?
FRED DE SAM LAZARO: Like many other patients, Carter had no symptoms when she was diagnosed with hepatitis C in 1993. She got the news from a routine blood test. Now, she’s one of almost four million chronically-infected Americans. Ten thousand a year will die from it, and researchers fear that within a decade more people will die from hepatitis C than AIDS. Unlike AIDS, however, hepatitis C has gotten very little attention. Former Surgeon General C. Everett Koop wants to change that with a public awareness campaign. He’s concerned that many of those who have the hepatitis C virus don’t even know they’re infected.
C. EVERETT KOOP, Former Surgeon General: The sad thing about it is as soon as the virus enters the body, it begins a relentless destruction of the liver, and sometimes the patient who’s infected with the virus of hepatitis C does not know that he is infected until 10 years or maybe 15 go by, and then he begins to have liver failure from cirrhosis, and sometimes at 20 years patients develop as the first symptom hepata cellular carcinoma. So it’s a nasty disease that people know very little about because of its insidious onset.
FRED DE SAM LAZARO: Hepatitis C was an unknown before 1990. That was the year a screening test for the virus was developed. But even after researchers could tell when the virus was present in the body, not much happened because no effective treatment was available. But with new therapies slowly coming on line medical experts are re-thinking their positions.
SPOKESMAN: What we’ve got to do is decide what we think ought to happen. At that point we’ll let the agencies, the White House, and Congress, the lobbyists, whoever, battle it out.
FRED DE SAM LAZARO: This summer a federal Blood Safety Committee called on government to undertake the huge effort of notifying people who may have received tainted blood from a transfusion before the test was available. The committee, headed by Medical Ethicist Arthur Caplan, said the time to act is now.
DR. ARTHUR CAPLAN, Bioethicist: Until recently, there weren’t any cures and any treatments for hepatitis C. But now the appearance of Interferon, even the availability for some people of liver transplant makes it possible to do something about people who really have a bad case of this disease. And that shifts the occasion too. Before people said, what’s the point of looking back if there’s nothing to do? Now, it seems as if there may be real reason to look back.
FRED DE SAM LAZARO: But even for those who know they have the disease there still are no easy answers. Just one year before Denise Carter was diagnosed, her brother, Mel Cisneros, died from hepatitis C. Cisneros had been sick for years, but by the time for hepatitis C was available his body had been so ravaged by the virus it rejected two liver transplants.
DENISE CARTER: It was five years August. Five years August.
DEE CISNEROS: Yeah, I know, but the pain’s still there. It just doesn’t go away.
ROGER CISNEROS: Yeah. We still miss him.
DEE CISNEROS: We sure do. We’re happy we still have you.
DENISE CARTER: I’m kind of sticking around a while.
FRED DE SAM LAZARO: Mel Cisneros’s death made Carter’s diagnosis particularly hard for her parents, Roger and Dee Cisneros.
DEE CISNEROS: It was total shock. And I just–I–how can this be? I mean, why was God doing this to us? You know, why? Immediately I felt it was a death sentence. I lost a son. Now, why am I losing another child? Is this going to happen to all my children? It was devastating. All I could do was cry.
FRED DE SAM LAZARO: Hepatitis C remains a little understood virus. The most identified means of transmission is through needle sharing, making IV drug users the most “at risk.” But up to 40 percent of all hepatitis C sufferers say they’ve never used drugs and have no idea how they got the virus. Mel Cisneros did experiment with IV drugs, but his sister, Denise Carter, did not. Carter originally assumed she’d caught the virus from tending to her sick brother. But the amount of the damage to her liver suggested she had had it for some 20 years. Carter’s mother felt enormous guilt.
DEE CISNEROS: The first thing I felt was what’s going on here. You blame yourself and you brow beat yourself, and you wonder what did I do wrong, and we finally got to the place that do not look for anyone to blame but just to see what we could do to save her.
FRED DE SAM LAZARO: Carter has given up trying to find out how she got the virus. While questions remain about transmission, it is known that getting a tatoo, sharing a razor, or toothbrush, snorting drugs, and piercing the body are all ways to catch the virus. Medical professionals exposed to blood also face a higher risk, as do people who received blood transfusions before 1990. But unlike AIDS, sexual transmission is rare. Doctors are now encouraging routine blood tests for those in known risk groups, but determining how someone got the virus is complicated by the length of time the virus takes to show up.
C. EVERETT KOOP: Only about 25 percent of people can remember having anything. They thought it was a touch of the flu, or a GI bug, or something like that. And unfortunately, when the virus invades the human body, the body’s immune system is very ineffective at getting rid of the virus.
FRED DE SAM LAZARO: While 85 percent of those with hepatitis C will develop chronic infection, recent studies show that a small number–up to 15 percent–are able to recover fully without any treatment. Dr. Coleman Smith, a Minneapolis liver specialist, says the severity of the disease also varies.
DR. COLEMAN SMITH, Liver Specialist: It takes many years before severe liver disease occurs in many people. And sometimes it takes so long that the patient may have died of some other unrelated illness even at a very advanced age without any evidence of significant liver disease, but certainly no doubt in some people it can progress to severe liver disease, end up with cirrhosis, a need for liver transplant.
FRED DE SAM LAZARO: In fact, hepatitis C has become the most common reason for liver transplants in adults in this country. Even so, many in the medical community are not fully informed about the condition. While looking for the best medical care, Carter says she interviewed five doctors who knew less than she did about the disease.
DENISE CARTER: There was the perception in the medical community that it wasn’t that serious, but no one could tell me that at that point. I had watched my brother die from it. No one could tell me, oh, you’re going to die from something else, or don’t worry about it.
FRED DE SAM LAZARO: But early medical intervention and life style changes could help, according to Dr. Koop.
EVERETT C. KOOP: If you don’t get the disease early, you’ll lose a lot of the options you have for treatment. But one of the things a person should know, for example, if hepatitis C positive by test, is that their livers are in danger, and they certainly shouldn’t add to that danger by consuming a lot of alcohol.
FRED DE SAM LAZARO: By altering her lifestyle, Carter has stabilized her condition. She is relying on alternative treatments, such as herbal teas, acupuncture, and Eastern therapies. She made the changes after the only drug now available for treatment, Interferon, failed to work for her. In fact, Interferons–human proteins that are used to fight the virus–only work in about 15 percent of those infected. But Carter is looking into new drug trials, which combine Interferon and another substance called Riboviron, which have shown encouraging results.
SPOKESPERSON: Hepatitis C is–it can progress rather slowly.
FRED DE SAM LAZARO: This phone bank in Colorado is part of an effort to get the word out to people who have the disease and don’t know it.
SPOKESPERSON: And, as you can see, the only way that it can be diagnosed is through a specific blood test.
FRED DE SAM LAZARO: They’re training operators on how to take calls from the 30,000 people who will be contacted this month by the Red Cross to tell them their blood donations had been rejected in the past because they carried hepatitis C. Dr. Richard Davey is with the Red Cross.
DR. RICHARD DAVEY, Red Cross: Now we’ve learned more about this illness, more about this virus, and so we’ve had an opportunity to send new letters, a series of additional information to these donors that can be, we feel, very helpful to them in terms of learning more about their illness, learning more about treatment or therapy that might be available to them, and getting them in touch with physicians that might give them appropriate information.
FRED DE SAM LAZARO: Ann Jesse’s hepatitis C support organization is overseeing the project, which will provide referrals to physicians and support groups nationally.
ANN JESSE, HEP C Connection: They’re going to be scared. You know, now we can talk to these people and try to help them in any way that we can because they’re going to be terrified. But the information is there now, and it wasn’t prior to four years ago.
FRED DE SAM LAZARO: The Red Cross’s effort to contact 30,000 people who were rejected as donors is just a tip of the iceberg. Bioethicist Caplan says notifying all those who may be at risk from transfusions they received before 1990 is going to be a massive undertaking.
DR. ARTHUR CAPLAN: We could be looking at a major problem ten, twenty years down the road. If we’ve got four million infected people, two hundred and fifty thousand of which may have come from earlier blood transfusions in the 1980’s, that’s a real challenge for us, and one that the society has got to prepare its resources to expend on to deal with.
FRED DE SAM LAZARO: A challenge to find the money for testing, for counseling, and for treatment, and a challenge to convince the rest of the public that the nation’s blood supply is now safe to use.