Killer virus comes with stigma attached
March 14, 2003
When Susan Matthews learned almost a year ago that she has hepatitis C, a weight was lifted off her shoulders.
“In a way, I was almost relieved because we looked at so many (other) things,” said the 40-year-old South Lake Tahoe woman, who is trying to form a local support group for those who suffer from the viral infection of the liver that is transmitted through the blood.
It’s the leading cause of liver transplantation in the United States, according to the National Institutes of Health.
A blood test indicated her liver failed to operate on all cylinders.
Before she received the diagnosis, she had undergone testing for mononucleosis as well as heart and thyroid conditions to determine the reason for her severe fatigue, muscle pain and episodes of depression.
“We lived in the dark for three months,” she said.
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Internet chat rooms on the subject are filled with stories in which people have gone to the emergency room fearing they’re having a heart attack and instead discovering they’re suffering from symptoms of hepatitis C.
Other symptoms include bloating, headaches, irritable bowel syndrome, frequent urination and itchy skin.
Matthews shared her frustration at having to chronically itch the bottoms of her feet and palms of her hands.
Having hepatitis C brings on an unexpected emotional battle, too. Matthews said she’s been shunned by neighbors and co-workers.
That’s why she wants to form a support group or telephone bank to those who need to have their psyche stroked. But even forming a support group comes with problems.
“People are so freaked out somebody is going to find out,” she said, adding some of the 40 people who have called about the support group won’t give her their names.
Hepatitis C — which has been known to mutate 20 times faster than AIDS — comes with a stigma much like the sexually transmitted and/or blood-borne disease.
Many cases can be traced to intravenous drug use.
Sierra Recovery Center of South Lake Tahoe has seen a growing number of people in their programs who have it, Executive Director Betsy Fedor said.
“Like AIDS, people look at it as affecting the derelicts of society. What they don’t understand is there are so many other ways,” Matthews said, describing the stigma associated with a disease that claims an estimated 10,000 lives a year in the United States, according to the Centers for Disease Control and Prevention.
The CDC says about 4 million people may be infected, with those numbers growing rapidly since its detection in 1989. The number climbs to 200 million worldwide, the U.S. Surgeon General’s Office reports.
Matthews is unsure of how she contracted the disease, adding there could be a number of reasons. She sports a tattoo, pierced ears and once worked as an emergency medical technician — a high-risk field.
“I’ve had blood splashed in my face. I probably bought new shoes every month,” said Matthews, who no longer works.
After taking a blood screening, Matthews had a confirmation test and a reading on her type and viral load before seeing Dr. Aijaz Ahmed. The Stanford Medical Center specialist comes to Barton Memorial Hospital once a month to see South Shore patients.
Barton’s own staffers receive a pre-employment screening for hepatitis C.
Matthews said she was forced to be vigilant about receiving adequate health care, and she believes the medical establishment has a long way to go before it has a grip on the treatment of the virus.
She takes one shot a week of Peg-Intron and five Rebetal pills a day to kills the virus, which can be linked to liver cancer, arthritis and diabetes. She washes down the medication with 90 ounces of filtered water.
“You get very dehydrated,” she said, taking a swig of water.
She has given up drinking alcohol because it’s toxic to the liver.
She also forces herself to eat, as the medicine decreases her appetite.
“I’m lucky if I can have 20 bites in a meal,” she said because she has also lost her appetite.
After her savings were depleted for out-of-pocket expenses, MediCal has covered her six-month treatment plan.
“If you’re without health insurance and not a veteran, you’re SOL,” said El Dorado County health promotions educator Chuck Newport, who sees many cases through jail and drug-treatment programs.
There’s an estimated 2,500 cases in the county. Newport is concerned about this number, in addition to the national figure of one in three people not having health insurance — a figure that is on the rise.
He’s more worried about the numbers of those who don’t know they have what’s being referred to as a “silent epidemic.”
Between 30 to 40 percent of those who have hepatitis C don’t know how they have it, the county cites.
“I’d like to see more testing of people who have some risk. There’s virtually no funding for hepatitis C, and to me, it’s irresponsible to not have (public) money to test people for infectious diseases,” he said. “Why don’t they cough up money from some other source?”
The self-test costs $70.
Hepatitis C has become more troubling for health care professionals because approximately 85 percent of those who carry the virus fail to lose the infection after six months and are consequently subject to relapses. It is not a disease that is curable, but much like HIV, one that can be managed. There’s no vaccine.
Newport hopes education will help the medical community manage the virus.
“Some of what the medical establishment is waiting for are less toxic drugs,” he said.
-Susan Wood can be reached at (530) 542-8009 or via e-mail at firstname.lastname@example.org