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Goodbye to the Boys on the Bus: How the VA Cured My Hepatitis C

They were a rough-looking crew, the boys on the bus. To be fair, practically no one looks great at 5:45 in the morning, the time you have to show up at the Veteran’s Administration Outpatient Clinic in Redding to catch the van to Mather Medical Center in Sacramento. I say “boys” but occasionally a woman or two joined us, all of us veterans who for a variety of reasons choose the VA for our healthcare needs, even if it means occasionally riding the short bus 200 miles to see a specialist.

Most of us kept to ourselves, perhaps because the hour was early and talk would have inevitably turned to the illness that had earned each of us our seat. Cancer, lung disease and diabetes don’t make for great breakfast conversation, especially if you happen to be suffering from one of those maladies and you’re on the way to the doctor to find out how long you’ve got to live. Hepatitis C was my illness and I’ve never been keen to share that information with anyone. Our silence was stoic, not uncomfortable.

We always had the same driver (he knows my name but I never learned his) and he has great taste in music, so we’d kick back and relax to a bluesy soundtrack as sunlight dawned on the valley scenery passing before the windows. Sometimes we’d stop in Anderson or Corning to pick up another veteran. The only thing preventing you from sleeping all the way down was the occasional violent jolt transmitted from I-5’s decaying surface through the worst rear suspension in the universe into your head resting on the side panel.

The driver would drop us off in front of Mather around 9:30 and warn us to return on time or risk missing the ride back to Redding. The truth is he’d never leave a veteran behind. I know because he had to come looking for me once. He found me surfing the wifi in Mather’s cafeteria, which features authentic military chow hall cuisine, a novelty that seems to suit the doctors and nurses who dine there daily but for me wears thin after the third off-tasting piece of mystery meat. I’m going to miss the boys on the bus, but not the food at Mather.

For the past two years, I’ve been riding the VA van to Mather Medical Center to see Dr. Raymond Byun, my infectious disease specialist. He’s been treating me for Hepatitis C since 2010. Last month I saw him for what might be the last time.

I contracted Hepatitis C in 1981 from a blood transfusion while serving in the U.S. Navy. Like many people with the disease, I was symptomless and didn’t find out I had it until much later, in 1995. I’ve been lucky. Two liver biopsies since then have confirmed that the virus has progressed slowly, doing damage to my liver, but not enough to be considered life-threatening. But even though I’ve been fortunate, Hepatitis C has hung over me like a death sentence, reminding me every time I dare sip a beer that the virus is in there, boring into my liver like a malignant worm.

Because my liver is not cirrhotic, I put off Hepatitis C treatment for more than a decade. For my particular genotype of the virus, treatment was a dubious prospect: 48 weeks of interferon and ribavirin, powerful anti-viral medications with severe and often debilitating side effects, offering only a 30 percent chance of viral remission. I declined treatment, and my first liver doctor put me on a program unofficially known as “watchful waiting.”

I switched to Dr. Byun five years ago and quickly learned he was no fan of watchful waiting. He thought my concern about the treatment’s side effects, which can include depression, memory loss and nausea, was misplaced. If it made me too sick, I could always quit taking it, he said. But I was employed as an editor at the time and worried that the side effects would prevent me from working. Twice the good doctor attempted to persuade me to begin treatment. Twice I turned him down.

Because I kept an eye on the pharmaceutical research and a genuine miracle cure seemed immanent, I figured I was taking a calculated risk. I’m pretty sure Dr. Byun figured I was a wimp.

The magic pill arrived in 2013 in the form of sofosbuvior, which belongs to a new class of drugs known as nucleoside analogs. In clinical trials, sofosbuvior, in combination with interferon and ribavirin, completely eradicated the virus in more than 90 percent of the test subjects, and cut treatment duration from 48 weeks to 12 weeks. The test subjects didn’t just go into remission. They continue to be virus-free. They are in essence cured, something the old treatment with interferon and ribavirin cannot claim.

While sofosbuvior is a genuine miracle drug, it comes at a high price. When it first hit the market, each pill cost $1000, which over the course of the 84-day treatment (12 weeks) adds up to $84,000. However, because the Veteran’s Administration has a large pool of Hepatitis C patients, it was able to negotiate a price with the drug’s manufacturer that was low enough to begin offering the new treatment to veterans based on their level of liver damage. A 90 percent chance for a total cure is a heck of a lot better odds than a 30 percent chance for viral remission. I was ready to begin treatment at last.

Dr. Byun was enthusiastic, to say the least. His demeanor toward me changed. I had relented and allowed him to help me. Mather is a teaching hospital affiliated with U.C. Davis, and he excitedly told the student intern accompanying him on his rounds about my previous resistance to treatment. They left the room to arrange the prescriptions, and Dr. Byun promised to return in 10 minutes. When he did, his face was ashen. My liver damage was on the borderline and I didn’t qualify for treatment on the first round.

I wasn’t too bothered. I’d been waiting a long time and another year or two wasn’t going to kill me. Maybe. Anyway, it turned out the wait was only six months. Last October, I began treatment with sofosbuvir, ribavirin and pegylated interferon, the latter of which I had to inject once a week. To counter nausea caused by the ribavirin, I had to take omeprazole. When my white blood cell count plummeted, I had to inject epoetin into my stomach. A couple of times I missed with the syringe and was rewarded with dark bruises on my abdomen that took weeks to fade away.

When I saw Dr. Byun a month after beginning treatment, he informed me that I was already virus-free.

Despite all the attempts to counter the side effects of interferon and ribavirin, I kept getting sicker and sicker right up until the last dose, on Christmas day. I can honestly say I’ve never felt so bad over such a long period of time. I’m pretty certain I couldn’t have handled the 48 weeks of the old treatment regime. The good news is that sofosbuvir has few side effects and may soon be offered as a stand-alone Hepatitis C medication. If you have Hepatitis C and have resisted treatment for the same reasons I have, now is the time to reconsider your decision.

Last month I rode the van down to Mather for my final Hepatitis C check-up. Dr. Byun informed me that I remain virus free and most likely will for the rest of my life. He beamed delightedly and held out his hand, which I shook. This would be the last time I’d see him, he told me, and I felt a pang of sadness. Our once adversarial relationship had become friendly and the thought it would now be over hadn’t occurred to me. He showed me back to the waiting room and we shook hands again.

“Thanks Doc!” I said, patting him on the back. “You’re a real lifesaver! Literally!”

He beamed again and then disappeared behind the automatically closing door.

I went to the bus stop and waited to catch the van back to Redding. We had a small crew on board this day, and gradually every one else began turning up. We hadn’t exchanged names, but we recognized each other as comrades on the same grim mission. Today’s mission had ended well. We were all going home. One of us had even been cured. A great weight had been lifted off my shoulders. The malignant worm no longer turned.

I kept that information to myself, lest my good news make someone else’s bad news seem all the worse, and sat taciturn with my brothers, listening to the blues, watching the traffic and the rice farms and the truck stops roll by and thanking my lucky stars I get my healthcare from the VA.

 

R.V. Scheide has been a northern California journalist for more than 20 years. He appreciates your comments and story ideas.