HEPATITIS C VIRUS ACTION NOW
HCV Action Now
Here we combine our notes, thoughts, stories, and information resources into a plan of action. Any comments, suggestions, or corrections? Email feedback@hcvaction.org.
Want to learn more about HCV? Please read the Background Information and Personal Stories. Also visit Spectacular Policy for related information.
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Things You Can Do
HCV Action Now has thus far raised $938.00. Thank you!
HCV stands for the Hepatitis C Virus. This is the most common bloodborne virus in the world, chronically infecting about 3% of the population in the United States and also worldwide. Amazingly, even though it is often fatal, it receives almost no money or attention. The US government spends very little money on research for new treatments for HCV.
The current lack of attention and treatment for HCV is a disgrace in more ways than one. It is a moral disgrace because we’re aquiescing in millions of people having a greatly reduced span and quality of life, many of them never even properly diagnosed. It is an economical disgrace because the consequential loss of productivity makes not only victims but all of us less well off than we need to be. It is a distressing case of market failure that the enlightened self-interest of big pharma hasn’t addressed this widespread problem yet. And, finally, it is a scientific disgrace that almost all medical researchers choose to spend their time on diseases affecting far smaller groups in usually far less severe ways. A relatively small shift in budget and attention could remedy all this1.
Why so little attention? Maybe it’s because the disease remains undiagnosed for decades in most people, until symptoms finally appear in the form of severe liver damage. 95% of those infected with HCV don’t even know it. But diagnosing the infection is critically important — simple lifestyle changes (especially the avoidance of alcohol) can make a huge difference in the quality and length of life for HCV+ persons.
Generally it takes about twenty years from the date of infection for an HCV+ person to begin showing the symptoms of severe liver damage. Twenty years ago it was 1985, the year when injection drug use really started to take off in the United States. HCV is a blood-borne illness, and needle-sharing between IV drug users is one of the most common transmission mechanisms. So it is highly likely that a whole generation of people who used IV drugs (whether it was once, twice, or a hundred times) as well as their children (since HCV can be transmitted from a mother to her unborn child) are about to discover that their livers have come due.
Another at-risk group is people who have received blood transfusions any time before 1992. Prior to that year there were no screening procedures in place to help keep HCV out of the pool of donated blood, so transfusion recipients from that era may also have become infected. And their livers will soon be “due” as well. Such a large up-and-coming population of liver transplant candidates could place an unbearable strain on the organ donation system, and many will likely die before finding a match. It is far better to treat them now before transplants are needed.
Why so little for research, and so much more for other diseases? Maybe it’s to protect the value of the current medicine, which is still covered by patents (preventing the creation of more affordable generic versions). Things have recently improved; HCV research now gets roughly ten times the funding it got in 1996, but this is still less than one tenth of the money spent per death on AIDS research. $100 million per year is grossly insufficient. Have a look at the current Research News.
Why is now the time to increase funding tenfold? One simple reason, as reported in Nature Medicine, 12 June, 2005: Production of infectious hepatitis C virus in tissue culture from a cloned viral genome. Please see the details of this breakthrough research. And see Dr. Charles Rice’s great advance This development means that we can now cheaply and effectively utilitize far more resources in parallel to solve the problem fast.
Former United States Surgeon General Dr. C. Everett Koop is an advocate for HCV research and awareness, calling HCV the “Silent Epidemic”. Visit the website of the Koop Institute at epidemic.org
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