Tale of Two Viruses
Studies give HIVers coinfected with genotype 1 hepatitis C virus (HCV) only a 14 to 29 percent chance of responding to HCV treatment. But someone forgot to tell Bill Ballard. Having finished the standard treatment—pegylated interferon plus ribavirin—Ballard seems to have quashed HCV. The side effects sucked, but his triumph should inspire thousands of other coinfectees. Right on time, too: Liver disease (cirrhosis, or severe scarring, and cancer), which can result from HCV, has become a top cause of HIVer death.
Ballard, of Yonkers, New York, had kicked heroin and was working as an emergency medical technician when he was diagnosed with both viruses in 1994—“the gift that keeps on giving,” Ballard laughs. He began an HIV regimen—AZT (Retrovir) and delavirdine (Rescriptor), later adding 3TC (Epivir) and abacavir (Ziagen)—keeping CD4s above 200, viral load low to undetectable and side effects minimal.
But for years, his medical team, led by nurse practitioner Pat Ames, saw little point in treating his HCV because the available meds were ineffective. Besides, periodic measures of Ballard’s liver enzymes didn’t show inflammation.
Then, in 2001, shortly after the FDA improved treatment by approving pegylated interferon, which stays in your body longer than the non-peg kind, a sonogram of Ballard’s liver revealed fatty deposits. A biopsy—the “gold standard” for measuring liver damage, analyzing a piece of liver extracted with a needle—found stage-1 fibrosis, or mild scarring (stage 4, the worst, means cirrhosis). Ballard says, “I wanted treatment before anything else happened to my liver.”
Start or Stall?
Deciding if and when to take hep C meds can be tricky. Most specialists agree that HIVers with fewer than 200 CD4 cells should first up the count with HAART and that CD4s should hold steady before HCV treatment begins.
They also agree that those with the more treatable genotypes 2 and 3 should start after a stage-1 biopsy. But for genotype 1, “many experts recommend deferring treatment until stages 3 or 4, repeating a biopsy in two to three years,” says Brad Hare, MD, a coinfection pro at San Francisco General Hospital. You could start C therapy sooner, though, he advises, “if you’re having liver toxicity from HIV medications” and need liver repair in order to handle an HIV combo.
If a biopsy mandates treatment, brace yourself. “You’ll be starting a year’s worth of therapy with lots of side effects,” Hare says. “You’ll need personal support, stable housing and mental-health care.”
The manufacturers’ patient assistance programs helped Ballard pay for the combo (about $20,000). The paperwork took nearly a year. And because he has a history of depression—interferon can cause or worsen it—he had psychiatric tests and was prescribed antidepressants before starting treatment.
Finally, in October 2002, Ballard started weekly pegylated-interferon injections plus twice-daily ribavirin pills. Three months later, his HCV viral load had fallen from 900,000 to undetectable. “My nurse practitioner didn’t believe the results,” he says. The unbelievable has held up on four more tests. He ended the treatment on time, a year later. “If my next HCV test is still undetectable, they’ll consider the virus eradicated,” Ballard says.
“He’s a strong-willed guy,” Ames says. “He kept his appointments; he wasn’t drinking or using drugs during treatment.” Ballard says, “I adhere well, with extremely good support—from my 16-year-old twin girls, my mother and my HIV program.”
That Flu From Hell
He needed it. “After my first shot I had a 104-degree fever,” Ballard recalls, with “shakes so bad that my daughters had to help me into the bathroom. The inteferon took away my appetite, and I lost 26 pounds. I had complete body pain.” But after three weeks, “the aches and pains went away,” he says.
He dumped the antidepressants after a month and managed fine without them. But five months after ending treatment, his appetite is still AWOL, leaving his belly sore.
Ribavirin can produce anemia, so Ballard switched his anemia-prone AZT to d4T during hep C therapy, and interferon can cause thrombocytopenia (low platelets) and neutropenia (low white blood cells). The upshot: HCV combo therapy can result in fatigue and a temporary drop in an HIVer’s CD4 count. Add near-universal nausea and post-injection “flu from hell,” and “some people in my program said, ‘Hell, no, I’m not doing this,’” Ballard says.
Hang tough by “educat[ing] yourself about the tests, treatments and track records” before racing toward therapy, Ames advises. Doctors often disagree on whether patients with dim prospects of success should brave the misery. If at three months viral load hasn’t fallen by at least a factor of 100, most docs would recommend bailing.
Others advise caution before starting: “HCV is often slow-progressing,” says Daniel Raymond, a treatment specialist with the Harm Reduction Coalition in New York City. “Some people will live their whole life without ever having to treat. If you can avoid these toxic drugs, do it. Understanding if there really is [significant] liver disease is the first step.”
For Ballard, that first step is so yesterday. “I’m more worried about getting hit by a bus than about dying from either HIV or HCV,” he says. “I’m kicking both of these in the butt.”
When Nature Calls
If standard hep C treatment—ribavirin (Rebetol, Copegus or the
generic Ribasphere, approved in April) taken in combination with
pegylated interferon (Pegasys or Peg-Intron)—doesn’t liver up to your
expectations, go natural, but only under professional supervision.
These have shown promise in studies (also see “Liver It Up,”):
Chinese herbs—Licensed practitioners can dispense 10-herb Hepatoplex
1 (call 510.639.0280). But high doses of one ingredient, licorice, can
raise blood pressure and drop testosterone (already low in some HIVers).
Western herbs—Silymarin (milk thistle) may reduce HCV
liver inflammation. (A coinfectee study began in New York City in June;
718.622.0212.) Check with Doc before wetting your whistle with thistle
if you’re on HCV meds.
Supplements—Antioxidants (especially vitamins C and E, zinc, selenium and alpha-lipoic acid) can limit liver damage. The amino acid glutamine can help restore your body’s natural glutathione, which the liver taps when breaking down nutrients, drugs and toxins.