So often, I have to report bad news about the greed, corruption and malfeasance that infests much of the biomedical world today. So for once I'm glad to report some good news -- namely a cure that is said to work for 80 percent of those treated. A few months ago, a friend of mine, Karen Connell, sent an email headed "Whoopi" to her personal e-list. Her doctor had just told her she was finally cured of an old Hepatitis C infection, thanks to this new drug.
At Last: A Cure for Hepatitis C
Karen is one of my oldest friends in California -- a lesbian feminist and heroic survivor of a brutal attack by her ex-husband before coming out. I got to know Karen when my company, Wildcat International, hired her as our CPA and accountant in 1993. She continued with us for several years.
Long-Time and Invisible
For many decades, Hepatitis C has been a major identifiable cause of liver disease among Americans. The RNA virus causing it was first discovered in 1989. The infection is often asymptomatic, staying undetected for years. Chronic infection can lead to cirrhosis or cancer of the liver. In the U.S., HCV is spread primarily by sharing of dirty needles among intravenous drug users, by unsterilized medical equipment and -- until the U.S. started screening the blood supply for HCV in 1992 -- by blood transfusions. HCV is not known to be spread by direct sexual contact.
Till now, standard treatment has been a combination of Interferons and ribavirin, a protease inhibitor. (Interferons are proteins released by the body that stimulate the immune system against invaders like viruses.) Often the persons being treated were virus-free for a while, only to have HCV re-emerge in their bodies again.
But last year the FDA approved a new protease inhibitor -- boceprevir, manufactured by Merck (trade name Victrelis). It's the first new hepatitis drug in 20 years. With this and similar new drugs, complete cures are now possible for as many as 80 percent of HIV-negative persons who have HCV -- even those with long-entrenched infections. Among these, Karen Connell is now an example, and she consented to be interviewed.
PNW: When did you first discover that you had contracted Hepatitis C?
KC: In August of 2009. I had just had my annual physical and happened to mention to my doctor that my chiropractor, who also did kiniseology, told me something was going on with my liver and ran a liver-function panel. It came back indicating that my enzymes were high. So my doctor had a liver panel done in conjunction with the normal labs he did every year. He called me and asked if I had had any contact with Hepatitis C. He told me to go have the labs done again, just to be sure, along with a viral count.
PNW: Do you know how you first contracted the virus? So often, today, Hep C is contracted by injection-drug users. But back in the era you're talking about, Hep C was more commonly transmitted through transfusions of infected blood.
KC: Yes, that's exactly how I got it. Thirty years before, after my husband assaulted me and slashed my throat, the hospital gave me 8 pints of blood transfusions before they started surgery. They didn't know how to screen for that particular virus until ten years after I was infected. It was like he had taken another shot at killing me, and I was really furious.
PNW: How did learning you had Hep C infection affect your life?
KC: I'm a serious "if life gives you lemons, make lemonade" kinda gal, and I believe that things happen for a reason. But before I could get back to my philosophy of life I got really scared. It seemed there was no cure for this "dragon" that could continue on into cirrohsis or even liver cancer. I was furious that my body had let me down and allowed this to happen. I had no clue what it was and started to research it. The more I read, the more scared I became. I found out that I had been carrying this virus around for 30 years and had no symptoms, except that I tired easily.
PNW: Did your caregivers try other treatments first? And what was the protocol?
KC: First I was referred to the G.I Department and got a doctor who specialized in colon cancer. He went over my options and told me that he recommended the current treatment at that time, a combination of Interferon (which is chemotherapy but a lower dose than for cancer patients) and Ribavirin. I asked for a referral to a hepatologist and got one. That doctor ran all kinds of tests, liver biopsy, upper endoscopy, treadmill test and a CT Scan just to be sure I was strong enough physically to go through the treatment. I was almost 65 and that made them a bit wary. For most of the treatment, I was virus free. But three weeks after stopping the drugs, the virus was back.
PNW: So what was your doctor's next move?
KC: For my second round of treatment, they had this new drug that had only been FDA approved for 6 months. Boceprevir was added to the previous two drugs and I was off down the drug path again starting July 2011.
PNW: The new drug is very expensive, right? Did your insurance cover it?
KC:Yes, this drug costs $10,000 a month. But it was covered by Medicare through Kaiser Senior Advantage. So things went okay until I entered the "donut hole" everyone talks about on the commercials, about Medicare supplemental insurance. That was when I had a $4,500 out-of-pocket expense in one month. Then catastrophic coverage kicked in, so it wasn't bad after that. But with weekly labs it did add up quickly. I was fortunate that I could handle it financially.
PNW: The medical literature talks about side effects of Hep C treatment. Did you experience any?
KC: The side effects of all three drugs were mild nausea (they gave me more drugs to control that), and dizziness. And extreme fatigue. Some days I felt like it was all I could do to keep puting one foot in front of the other. I also developed such severe anemia that they added Procrit to my weekly shot routine. And the new drug played havoc with my taste buds. Nothing tasted good, not even chocolate! And I had sores in my mouth, so it was really hard to eat.
PNW: How did you feel on hearing from your doctor that you're finally virus-free for good?
KC: I did a little Snoopy happy dance. I had finally killed the dragon!
PNW: It's interesting that the news stories describe this new drug as one that makes Hep C "manageable" -- yet you're among the percentage who actually get cured. How lucky does that make you feel?
KC: Yes, I definitely was one of the fortunate ones. In spite of my age I was able to work the entire time I was in treatment. I just refused to give in to this affliction, and my side effects were manageable most of the time. I ate well and slept a lot. I also had a retired nurse as my caregiver so she gave me the weekly and later bi-weekly shots. I also stayed in touch with friends and they sent me prayers and healing energy. I am grateful for all the support I had through this long 2 1/2 years.
More Challenges Ahead
Today as many as 300,000 Americans living with HIV may also be HCV-infected, with increased chances that they will die from liver disease caused by HCV. Indeed, the incidence of co-infections is increasing, according to the CDC.
Treatment of people who are co-infected with HIV and HCV is still an ongoing battle. HCV viral loads are higher in co-infected people than they are in people who are HIV negative. Interactions between the HCV drugs and the HIV drugs can be a problem. The effect of HCV on the history of HIV in a person's body is still not well understood. At the 19th Conference on Retroviruses and Opportunistic Infections last spring in Seattle, co-infected treatment was a hot topic.
However, the current advances in what my friend Karen calls "killing the dragon" are cause for hope.
This article was previously published in Warren's "Left Field" column in the September 2012 issue of A & U Magazine.