HCV Facts: "Hepatitis C begins generally as a silent acute infection, with a fraction of the patients developing cirrhosis, end-stage liver disease or liver cancer. Although this is a generally accepted scenario in persons infected with HCV, there remains uncertainty about the true frequency of evolution of liver disease and its rate of progression." Write your Senator and Representative and show your support.

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BOSCO'S BUDDIES in Runner's World!

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View the U.S. Senate Bill to "establish, promote, and support a comprehensive prevention, research, and medical management referral program for hepatitis C virus infection."

OREGON CITY, OR. (MARKET WIRE);  March 16, 2007 -The Hepatitis C Caring Ambassadors Program issued a statement today urging policy-makers and private citizens not to be lulled into complacency regarding the ongoing hepatitis C crisis in the U.S. The nonprofit advocacy group's statement was a reaction to the report, "Surveillance for Acute Viral Hepatitis - United States, 2005," published today by the Centers for Disease Control and Prevention (CDC) in the "Morbidity and Mortality Weekly Report (MMWR)."
"Hepatitis C is the most common, chronic, systemic viral infection in the United States -- by a wide margin," noted Dr. Tina St. John, Medical Director of the Caring Ambassadors Program. "The MMWR article addresses the incidence of acute hepatitis only, which is rarely seen with the hepatitis C virus. The vast majority of people infected with the hepatitis C virus become chronically infected and many sustain serious, even life-threatening liver damage before the infection is diagnosed. The burden of chronic hepatitis C among Americans, which is not addressed in today's MMWR article, remains alarmingly high. It is critically important that people recognize chronic hepatitis C is an ongoing, substantial problem for millions of Americans."
At least 1 in 50 Americans has already been infected with the hepatitis C virus, and CDC's report indicates that at least 20,000 new infections occur annually. "With 4 to 5 million citizens already carrying the hepatitis C virus, and 50% to 75% of them being unaware that they've been infected, we clearly have an ongoing public health crisis on our hands," noted Hepatitis C Caring Ambassadors Program Director, Lorren Sandt. She added, "We are concerned that today's MMWR article could easily be misunderstood. Most people are unfamiliar with the differences in the various forms of viral hepatitis. A mistaken sense of reassurance or complacency at this point in the hepatitis C crisis could prove devastating to control and prevention efforts. More -- not less -- attention and effort are needed to avert thousands of needless deaths due to hepatitis C," concluded Sandt.
About Hepatitis C:
The hepatitis C virus (HCV) is transmitted by blood-to-blood contact. Hepatitis C is currently the leading cause of chronic liver disease in the U.S. and the most common indication for adult liver transplantation. HCV is known cause of liver cancer, the incidence of which more than doubled between 1975 and 1998, and is expected to double again by 2020. Chronic hepatitis C is associated with increased risk for other medical conditions outside the liver including diabetes, kidney disease, lymphoma, and neuropsychological maladies.
About the Hepatitis C Caring Ambassadors Program:
The Hepatitis C Caring Ambassadors Program is a division of the national nonprofit public charity, the Caring Ambassadors Program, Inc. (CAP). Hepatitis C CAP is committed to improving the health and longevity of those living with chronic hepatitis C through information, awareness, and advocacy.

Clinical trials on for low-cost hepatitis C drug

Vijay Dutt

London, January 2, 2007

Treatment for hepatitis C is likely to get cheaper in the near future, with clinical trials for a new drug — called PEGylated-interferon alpha molecule — beginning in India in 2007. The new affordable drug has been developed by Dr Sunil Shaunak, professor of infectious diseases at Imperial College based at Hammersmith hospital, with scientists from Imperial College and the London School of Pharmacy.

Calling their efforts “ethical pharmaceuticals, a revolutionary new model,” Shaunk said he and his colleagues have developed a cost-effective technology that allows them open up the interferon protein, drop in a sugar molecule called PEG and close the protein. The PEGylated-interferon retains its shape and cures hepatitis C infection in many of the 170 million people affected with the disease worldwide. The new method of pegylation does not infringe existing patents because it tweaks the molecular structure of an existing drug no longer under a 20-year patent to turn it into a new medicine that can be sold much cheaper.

The efforts of Shaunak and his colleague Steve Brocchini from the London School of Pharmacy will reduce the cost of treating hepatitis C to a fraction of the current cost. It will help millions in poor countries get a cure for hepatitis C, which is a leading cause of chronic liver disease and cancer.

Hyderabad-based Shantha Biotech will manufacture the drug in India. “I have been greatly inspired by Shantha Biotech founder Varaprasad Reddy, whom I met about four years ago. The company has a record of manufacturing affordable health products. If clinical trials co-sponsored by the Indian government are successful, the new drug can be supplied the world over at an affordable price,” says Shaunak.

The new molecule, a report in the journal Nature said, appeared to be as effective as the existing drug used to treat Hepatitis C. “The aim of this work is to make affordable cures for infectious diseases for the poor people by doing most of the work in universities and hospitals using funds from charitable institutions and hospitals,” Shaunak told HT.

Cheaper Hepatitis C drug on way

Posted:Wednesday, January 03, 2007

London

Researchers who have found a way to bypass the legal patent on an expensive drug say others should follow suit. According to a BBC report, Imperial College experts have developed a potentially cheaper version of an existing Hepatitis C drug by altering the molecular structure. They have also called on other universities and charities to retain the rights to new discoveries, rather than sell them to big drugs companies. The industry warned any such 'new' drug may need dedicated safety trials.
            The work of Professor Sunil Shaunak, an expert on infectious diseases, and his colleague, Steve Brocchini, from the London School of Pharmacy, was funded by, among others, the Department of Trade and Industry and the Wellcome Trust. The most effective drug treatment for the Hepatitis C virus is a version of a naturally-occurring molecule called interferon, which has been modified by coating it with sugar to allow it to remain in the body for longer. 
           The patent for the resulting drug - pegylated interferon - ruled out any other pharmaceutical which involved interferon coated with sugar. However, the Imperial team found a way to place the necessary sugar elsewhere on the interferon molecule instead, effectively creating a new medicine not covered by the patent. They plan to find a way to develop and market this alternative without involving pharmaceutical firms, at a fraction of the cost of the original medicine.

            Professor Shaunak said: 'As far as we're concerned, the end-game is the cure - you can get to the end-game in several different ways, and we have found a different way of doing it. What we have to recognise is that we have a real opportunity to cure infectious diseases in the developing world. At the current price, only a fraction of the number of people who could benefit from the drug will actually receive it.'
           Currently, many of the scientific advances which eventually lead to effective treatments are developed within universities or by researchers working for charities, but that 'intellectual property' is then sold to pharmaceutical companies who bring the product to market. Professor Shaunak called for a different approach - for academic institutions to go into competition for cures with 'big pharma'. 'We in academic medicine can either choose to use our ideas to make large sums of money for small numbers of people, or to look outwards to the global community and make affordable medicines.'
            A spokesman for the Association of the British Pharmaceutical Industry said that should this prove to be a 'new' medicine, then the same costly and time-consuming safety trials would need to be undergone before the drug could be marketed. 'Even if these are successful, you'd have to invest in commercial development to manufacture, distribute and promote the usage of your drug.' He said that pharmaceutical companies were already working hard to ensure medicines get to patients in the developing world, and often chose not to enforce patents.
            The pharmaceutical company Roche, which produced the original version of pegylated interferon, said that it sought patents in order to guarantee the resources to re-invest in further 'cutting edge advances'. A spokesman added: 'Roche is committed to ensuring that as many people as possible can gain access to our medicines, many of which have transformed once deadly diseases into manageable and even curable conditions.'

Time Bomb--
A deadly hidden epidemic is about to explode.
My brother lost his life to it. What you need to know...
Nanette Varian is a senior contributing editor for Glamour magazine.
(AARP Magazine, 7/2004)

GENE WOULD HAVE BEEN AMAZED at the sendoff he got. Standing room only in the funeral home for two-and-a-half days. Family, friends, middle-aged "kids" from the old neighborhood on West 238th Street in the Bronx, and a seemingly endless stream of coworkers from the stage crew of the Metropolitan Opera Company, where he'd worked. One of these, a biker-turned-church deacon, even performed the service. Elaborate stands of flowers formed a dense thicket around the casket, with the blossoming overflow forming a colorful conga line into a second parlor. You couldn't ask for a better farewell.

Problem was, it came decades too soon. When he died last June, my brother was only 52 years old.
For some three decades he had been stalked by an assailant that refused to show itself until it was too late. Like many of his contemporaries, Gene caught the some­times-deadly virus hepatitis C during a brief period of drug use. He was just 18 when he became addicted to heroin in 1969.
Within three years, he pulled himself out of it, successfully completing a methadone program. He got his life together, marrying a warm-hearted California girl named Kathy and raising two sons. But Gene's recovery from drug addiction is incidental to this story, as is the fact that he loved to read history or that he could make you happy simply by loping his cheery self into the room. His killer had already slipped the lock and crept into Gene's liver, where it lay quietly replicating and shape-shifting, disguising itself from antibodies at every turn as Gene struck sets for Aida, played with his Labrador retriever, taught his boys how to drive, and danced a wicked mashed potato at all our weddings.

More than 4 million Americans alive today have been infected by the hepatitis C virus (HCV), and some 30,000 more become infected every year. For a lucky 15 to 25 percent, the virus will simply disappear on its own. Most, however, will experience chronic infection. Ten thousand people this year will die from it. Unless some pro­found medical breakthroughs occur soon, the annual death toll could triple in the next decade.
This is America's most common blood-borne virus, fully four times more prevalent than HIV. Estimated new infections, already up to 180,000 by 1982, hit a record high of 291,000 in 1989. Add 20 years--the time it takes for hepatitis C to do its damage--and you have the makings of a time bomb for the baby boomer generation.
Where did this disease come from? Back in the early 1970s, a new strain of hepatitis--initially dubbed "non-A non-B" to distinguish it from better known strains of the virus--started attracting notice. It wasn't until 1989 that it got its own name, hepatitis C. The nation's blood banks didn't begin effective screening for the virus until 1992--it took three years to develop sensitive-enough test.
Hepatitis C is transmitted solely through contact with infected blood. You can get it from contaminated needles or dialysis equipment, and from sharing a personal item such as a tooth­brush, a razor, or a nail-grooming tool if there is infected blood on it. An HCV-positive mother can transmit the virus to her fetus; sexual transmission, though rare, also is possible.

"Hepatitis C really does mirror America," says Alan P. Brownstein, president of the American Liver Foundation. "The soccer mom who was transfused during a C-section before 1992. The corporate executive who tried heroin just one time in his teens. The Vietnam veteran--up to 15 percent of them have been infected. The doctors, nurses, firefighters, and EMT technicians who've been infected on the job. The college student or prisoner who got a homemade tattoo with an infected needle."
Within six to eight weeks of infection, some people experience tempo­rary, flulike symptoms such as fatigue, nausea, and muscle aches. If the virus is present for more than six months, the condition is considered chronic. Even then, "a lot of people have this infection and go their whole life without suffering from it," says Jay Hoof-nagle, M.D., director of the Liver Disease Research Branch of the National Institute of Diabetes and Digestive and Kidney Diseases at the National Institutes of Health. About one third of all cases do progress to serious disease, including cirrhosis and liver cancer, but that takes years. And there's the rub. You can't get help for something you don't even know you have.

In 1988, during a routine health exam, Gene's liver numbers looked a little fluky. Never much of a drinker to begin with, Gene gave up alcohol (and cigarettes, too, for good measure). It wasn't until 1991 that he was diagnosed with hepatitis C. But, for the longest time, everything stayed the same. Gene continued his very physical job at the Metropolitan Opera and went bicycling and in-line skating in nearby Central Park.

Then one day in 1996, the virus made its presence felt: Gene suddenly began to vomit blood--pints of it. He nearly bled to death. The hemorrhage was caused by a condition called portal hypertension, which happens when blood backs up behind the scar-hardened liver, putting enormous pressure on the smaller blood vessels around the stomach and esophagus until they burst. Gene survived, but to lessen his risk of recurrences, he was put on blood-pressure medication, and the swollen vessels were clamped with tiny bands. He had five more scary bleeds before they were finally brought under control.

Unfortunately, the virus's ever-mutat­ing form makes it notoriously tricky to tackle and, so far, impossible to vaccinate against. At the time of Gene's diagnosis, the treatment, interferon, was contraindicated by his bleeds and an advanced state of cirrhosis. This situation was going to get worse with time, the doctors told him. The only real option left was to explore the possibility of a liver transplant. He was referred to Mount Sinai Hospital's transplant program in New York in August 2000.

Here's the problem with a liver transplant: you are looking at a waiting time of up to five years, even more, depending on blood type and other factors. Rising need that's outpacing supply (thanks in part to tighter gun, helmet, and seat-belt laws) means that of the 17,000-plus people who need new livers, only about 5,300 will get one, while another 1,300 die waiting.

One way around this is to use a live donor, an increasingly common procedure in which a healthy adult of compatible blood type donates a 40 to 60 percent chunk of his or her liver to replace the diseased organ of the recipient. If all goes well, both pieces soon regrow to normal size. But the procedure isn't dangerous just for the recipient; it puts the donor at risk, too. In 1999, 41-year-old North Carolinian Danny Boone died of multiorgan failure a few days after donating his liver to his half brother. He was the first American known to die after donating a liver to another adult.
While most media coverage heralded living-donor liver transplants as nothing short of miraculous, some doctors began questioning the ethics of putting healthy people in harm's way. An article in the May 2001 New England Journal of Medicine called the increasing popular­ity of living-donor liver transplants "too much, too soon," especially at hospitals with little transplant experience.

But there's another terrible question: who would put themselves at risk? In our family, it came down to a choice between my other brother, George, three years older than Gene, and me--I'm nine years younger. We both fell within the required age range, generally 18 to 55, depending on the hospital. We both have type O blood-meaning we are "universal" donors who can give blood or organs to anyone.

At first, Gene wouldn't allow it. "Why should you risk your lives, especially because I did something stupid when I was young?" he said. But George would have none of that argument. His kid brother needed something, and he intended to give it to him. We started planning to go ahead. I was to be the backup, in case George's liver couldn't be used. I have to admit I was terrified. I wanted to help. But I knew the dangers. I sometimes wished I hadn't found myself in this position. (Just revealing this secret fills me with guilt.)

In late 2001, George passed all the tests and was ready. Then, on January 13,2002, Michael Hurewitz, a healthy 57-year-old reporter for the Albany Times Union, died three days after donating part of his liver. To his brother. At Mount Sinai. The hospital was prohibited from performing any further such procedures pending investigation. It would be 14 months before the ban was lifted.

Even so, a stubborn lung infection had rendered Gene untransplantable for much of that period. His condition deteriorated rapidly in 2002; this shot him so far up the (nonliving-donor) transplant list that his doctors told him to wear a beeper. Then a suspicious mass popped up in his pancreas.
You can't have a liver transplant if you have cancer outside the liver. Because of the growth's position, surgical biopsy was the only way to confirm what doc­tors at both Sinai and Sloan-Kettering were fairly certain was a malignancy. But in Gene's weakened state, the procedure would likely have killed him even before the hep C finished its job. He decided against surgery, buying himself one more springtime with family before his final hospital stay. During a perkier moment, he delighted our mother, the staff, and, I'm happy to report, himself, with an impromptu little jig by the nurses' station. On Father's Day 2003, he was gone.

Toward the end, Gene and I talked about what may have caused him to start using drugs in the first place. "I was a shy kid," he mused. "I guess it helped me to relax and fit in." Yet he matured into the kind of man whose calming presence in the crazy back­stage world of the opera would prompt big, burly stagehands to confess, "I never thought I could love a boss until I worked for Gene."
My brother liked the idea of my telling this story someday--no matter what the ending. Maybe it would encourage someone to get tested before it was too late. "Hepatitis C is not necessarily a death sentence," says the American Liver Foundation's Brownstein. He adds that the latest interferon therapy-a two-drug combination-works for between 42 and 80 percent of those afflicted (depending on the genetic makeup of the virus). "And we're not talking lifelong disease man­agement, just 24 to 48 weeks."

Gene also would have wanted everybody reading this to sign an organ-donor card and to tell their loved ones their wishes. A living donor saves one life, but organs from a cadaver can help a half-dozen or more people.

As I write this, the first anniversary of my brother's death is approaching. The loss still feels utterly incomprehensible So whenever I go hiking on his old route in Central Park, I try to take Gene along with me. He's invisible now and, unburdened of his disease, light as air. So he could be anywhere--on the handlebars, up on my shoulders. Maybe he's even dancing.

Who Should Be Tested
You may have been exposed to the hepatitis C virus if you...

Ever injected illegal drugs-even if it was just once.
Were treated for clotting prob­lems (such as hemophilia) with a blood product made before 1987.
Received a blood transfusion or solid-organ transplant anytime before July 1992.
Have ever undergone long-term kidney dialysis.
Have any signs or symptoms of liver disease (such as abnormal liver-enzyme test results).
Are a health-care worker who has had an on-the-job exposure to HCV-positive blood (such as a nee­dle stick or splashes to the eye).

For more information about hepatitis C, visit www.liverfoundation.org or www.hepfi.org. You can also call 800-465-4837. To learn how to sign up to be an organ donor in your state, go to www.donatelife.net.