Features
The New Viral Epidemic
The New Viral Epidemic:
Silence Could Cost You Your Liver or Your Life
by E. Lynne Lemont
Quick, name a disease other than AIDS that is incurable, will kill a large percentage of its sufferers, and has no vaccine. Give up? It’s Hepatitis-C, the abandoned stepsister of the Hepatitis clan. While STD-prevention agencies and industries promote vaccination and prevention for Hepatitis A and B, the silence around Hepatitis-C is deafening.
I personally know at least one woman who has it and is going through treatment with Interferon and Ribavirin. She’s lost 30 pounds that were barely there to start with, and many of her days are punctuated by recurring bouts of exhaustion, dizziness, and nausea. Her hair is a quarter-inch of fuzz thanks to the effects of the treatment. She’s been on a water diet as the Interferon turns her body toxic in hopes of killing the virus.
I don’t know how or when she got it, and at this stage it doesn’t matter. I just want her to live a longer life, to beat this disease and its toxic treatment. I want to see flesh where the hollows are in her face. I want to share a meal that doesn’t come out of a water bottle. I want her and her partner to spend a lot more years together, hiking, planting gardens, playing the mandolin.
Hepatitis-C (also known as HCV) “affects more people from all walks of life, in every state, in every country. And unless we do something about it soon, it will kill more people than AIDS,” according to former Surgeon General C. Everett Koop. It shares many risk factors with AIDS, including intravenous drug use, transfusion exposure, exposure for medical and dental workers through handling needle and other blood-exposed instruments, and sexual transmission. But Hep-C can even be transmitted through sharing toothbrushes if your gums bleed a little bit. Under the “right” circumstances, you can get it from borrowing an infected roommate’s razor. You can get it by snorting coke through a shared straw if the other person leaves a little blood-carrying mucus on the tube.
Chopped Liver
This is your liver when it’s healthy. It’s pink and smooth and has two distinct lobes. It filters impurities out of your blood and helps maintain your balance of liquids. It gets unwanted nitrogen out of your body (changing it to urea and moving it to the kidneys where we piss it away) and manages the body’s “fuel.” Basically, when your blood sugar gets low the liver keeps your brain (and other organ) cells in glucose and functioning by dipping into its storehouse.
The liver is the largest organ in the body. It makes proteins that regulate blood clotting and produces bile to help absorb fats and fat-soluble vitamins.
This is what’s left of your liver when Hep-C gets done with you after 5 to 20 years of chronic liver disease. It’s gray and scarred. When scar tissue replaces normal, healthy tissue – cirrhosis – it blocks the flow of blood and keeps the liver from doing its job. According to the National Institutes of Health, cirrhosis is the eighth leading cause of death by disease, killing about 25,000 people each year. A person can live for years with a low level of chronic liver disease. If your disease is severe and your liver is barely functioning, either you get a transplant or you die of liver failure. HCV is responsible for a third of all liver transplants in this country. No one can live without a liver. Any questions?
Risk Factors: It’s Not Just IV Drugs Any More
If your mother had Hep-C when you were born, you’re at risk. If you’ve had any blood transfusions before 1990, were seriously ill as a child, were ever in prison, or served in the military and/or in Vietnam during the war, you have risk factors to consider.
If you worked as a dentist or chairside nurse or in a hospital or other setting where blood exposure was possible before “universal precautions” you might have been exposed to HCV. If you had a caesarian section before 1990, if you have tattoos or piercings (the inks – if shared – and instruments are potential vectors) you’re at risk.
Actress Pamela Anderson has HCV. She says she got it from sharing a tattoo needle with her then-husband Tommy Lee.
And yes, intravenous (IV) drug use and sex with an infected partner (who may not know he or she is infected) are major risk factors. And if you are alcoholic or live with a family member who has Hep-C, that’s more risk. If you want to get an assessment of your risk, check out www.epidemic.org, click on The Test.
What It’s Like
Some people who have the virus can have no symptoms for a long time. The onset of symptoms can be sudden or slow. When they do appear, fatigue, nausea, joint and muscle pain and weakness sap your energy. If you go to a doctor for these generic symptoms, you may or may not get the tests needed to identify HCV, because it looks like flu, or fibromyalgia, or rheumatoid arthritis. If you ask specifically to be tested for Hepatitis C, you may get those cross-wise looks from a few medicos who are thinking you must be a drug addict or a prostitute to be at risk.
Or at least, that’s the way many of the people who wrote in to post their stories on the National Hepatitis-C Coalition website felt and were treated. I can’t tell you whether my friend had a better or worse experience – she’s too sick right now to talk about it.
One expert from a Manhattan hospital says that 20 percent of the people who contract the virus will ultimately suffer liver failure and death. The CDC’s figures are much lower, less than 3 percent. It kills about 8,000 people every year and nearly 4 million people in the US have the virus. Most of them don’t know it, since the virus can stay dormant for up to 10 years.
Getting the Test(s)
So after you’ve looked at your risk factors, you decide you want “the test.” The first and broadest test is like those for many chronic viral infections – a nurse or technician sticks a needle into a likely vein and draws blood into a vial. The blood is analyzed to see whether you have antibodies to the virus. Antibodies indicate that you’ve been exposed, but not whether the virus is active or whether you have liver damage. Even the CDC’s own HCV information site admits that there is the potential for both false positives and false negatives.
If the result is positive, another similar test is used to confirm it. There are tests that detect the presence of actual virus, but the CDC says they are available on a “research-only” basis.
After a confirmed positive test result, you’ll be scheduled for regular tests that analyze how well your liver is working.
The Virus Factor
Hepatitis-C was identified in 1989. Before that, a person with the disease might be diagnosed with “non-A, non-B hepatitis.” There were no treatments at all. Like HIV, HCV mutates – not only from person to person, but within your body – which is what makes finding a vaccine so difficult. It’s also what makes it hard for your immune system to fight off the infection.
There is no disease-specific treatment, yet. Currently Western medicine offers its usual broad approach: toxify the body and hope the virus dies before the patient does. Its current agent of choice is Interferon and/or a combination attack with both Interferon and Ribavirin.
Is the Treatment Worse than the Disease?
According to the Centers for Disease Control, the side effects of Interferon treatment include “fever, chills, headache, muscle and joint aches, fast heart rate” early in the course of treatment. Later side effects include “tiredness, hair loss, low blood count, trouble with thinking, moodiness, and depression.” They also suggest that more severe side effects are “rare,” but include “thyroid disease, depression with suicidal thoughts, seizures, acute heart or kidney failure, eye and lung problems, hearing loss, and blood infection.” In other rare cases the treatment can kill patients with cirrhosis or through blood infection. Fifteen percent of people doing Interferon for HCV have to stop the treatment because of the severity of the side effects.
And if you try the combination treatment of Interferon plus Ribavirin, you can add severe (and potentially life-threatening) anemia to the list.
One nurse who has the virus (and posted her story on the National Hepatitis-C Coalition site) has decided not to undergo the Interferon treatment. For her, the side effects are not worth what she characterizes as a 40 percent chance of a “sustained response.”
And So ...
No one wants this disease. If you have any risk factors, get tested.
If your test comes back positive, find out how your liver is doing. Get as much information as you can from a wide variety of sources. The National Hepatitis-C Coalition site has links to sources ranging from the CDC to anti-child-vaccination crusaders, as well as stories from others going through the disease and/or treatment.
Find support groups. Take precautions to keep from giving HCV to your lovers, family members, roommates. Be gentle with yourselves and careful with your loved ones – we need to stop this one now.
E. Lynne Lemont lives and writes in Franklin County.
For More information:
National Hepatitis C Coalition, Inc.
P.O. Box 5058
Hemet, CA 92544
National HepLine: 909.658.4414
www.nationalhepatitis-c.org
Hepatitis-C: An Epidemic for Everyone
www.epidemic.org