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Experts can only theorize. Hepatitis C might be transmitted sexually--although many spouses of Hepatitis C patients never get it. It could probably be spread by sharing razors or nail clippers or even toothbrushes, certainly by accidental needle sticks or dirty acupuncture and ear-piercing needles.
Michelle Kiefhaber, a west-side Phoenix housewife who seems the picture of wholesomeness and health, thinks she contracted Hepatitis C from a tattoo she got 22 years ago, when she was 18. Now she's awaiting a liver transplant.
"This disease is worse than AIDS," says Jack Barritt, a molecular biologist and lab manager for National Genetics Institute, a California biotech company that processes most of the country's research tests that measure the virus levels for HIV and HCV (Hepatitis C Virus). After collecting a database of more than 40,000 Hepatitis C patients, he says, "AIDS is a more rapid disease. But this one fools the body into thinking you don't have an infection."
And then it leaves you in limbo.
"You hear so many stories," says Anthony Mercurio of Scottsdale. "Are you going to last two years? Three years? Are you going to be a candidate for liver transplant?"
Mercurio, 62, is a retired Army officer who was diagnosed with HCV in 1993. When the doctors first said "Hepatitis C," he countered with, "What's that?"
Now, as he enters yet another medical trial to see if something can slow his cirrhosis, he says, "I couldn't get those answers. And I understand now that I couldn't get those answers."
The liver may be the most important organ in the human body. It has been described as a chemical factory, but it's more like a combination toxic-waste and pharmaceutical conglomerate.
Not only does the liver remove from the blood the poisons we accidentally breathe in and the poisons--like alcohol and tobacco--that we deliberately ingest, but it also neutralizes the toxic by-products of living. Digestion creates large amounts of ammonia, for example, and if the ammonia weren't broken down into urea by the liver, it would find its way to our brains and cloud our judgment, a condition called encephalopathy.
But the liver also makes the proteins that make up our blood and stores fat and vitamins for later use. It converts glucose, the sugar our bodies use as fuel, into a stored form called glycogen. And, as if that weren't enough, the liver also regulates the amounts of cholesterol, testosterone and estrogen in our systems.
The term "hepatitis" does not refer to a type of virus, but merely to an end result, which is an inflammation of the liver.
Hepatitis can be caused by excessive alcohol and drug use, including over-the-counter analgesic drugs, or by a number of viruses. But most of the viruses are very different from each other. Hepatitis A comes from food or water that has been contaminated with infected feces. Hepatitis B is spread by shared needles and unprotected intercourse. There are hepatitis viruses labeled D, E and G, as well, and each has its own peculiarities.
HCV, like HIV, is a virus that affects RNA, one of the molecular components of all living cells. And like HIV, HCV is a mutating virus, which makes it hard to treat because it is ever adapting to whatever defenses the body's immune system sends at it. Hepatitis B, by contrast, does not mutate, and scientists have therefore been able to find a successful vaccine against it.
But as for the nature of the Hepatitis C virus, it is more closely related to St. Louis encephalitis, which affects the brain, and yellow fever, a mosquito-borne liver disease, than to HIV or the other hepatitis viruses.
The initial HCV infection may be mistaken for a case of the flu. And then it cooks slowly.
"This is not HIV, this is not Ebola," says liver specialist Dr. Alan Liebowitz. "This is something that smolders in the background. It's not a disease that kills people very quickly. It takes years and years to bump off a liver."
About 15 percent of Hepatitis C cases clear themselves out of the body. The remaining 85 percent become chronic, and the symptoms may arise in five or six years or as late as 20 years after infection.
For some patients, like Don Dietz, the symptoms come on suddenly. His internal bleeding is called "esophageal varices" and occurs when the blood flow is obstructed through the liver; the blood then tries to flow anywhere it can and ends up rupturing the tiny veins in the esophagus.
Other patients experience rashes and itching and chronic fatigue, and they go from doctor to doctor trying to figure out if they're sick or just crazy.
"Having Hepatitis C is like waking up with the worst case of flu you've ever had, every morning of your life," says Leslie Smith, 46, a Phoenix schoolteacher.
Sometimes the disease leads to liver cancer; more frequently it develops into cirrhosis in which the liver cells die and the liver hardens.
Doctors think that the drug interferon can slow down the Hepatitis C virus if it's administered early enough in the disease. But it does no good for patients whose livers are already cirrhotic. And even in those patients who have not yet reached cirrhosis, it only helps 50 percent of the cases--and half of those will relapse.