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.

R.V. Scheide
R.V. Scheide has been a northern California journalist for more than 20 years. He appreciates your comments and story ideas. He can be emailed at RVScheide@anewscafe.com.
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32 Responses

  1. I have watched friends and family go through grueling treatment, and I didn’t realize until I saw it firsthand just how much courage it takes do stay the course.

    I’m glad you had a good outcome, and I think it is both brave and generous of you to share this story. I do hope the treatment becomes cheaper and will be stand-alone.

    Powerful piece.

  2. Avatar Kathleen says:

    Congratulations!!

  3. Avatar Charlotte says:

    I am always happy to hear of the good that the VA can and does do. My hat is off to you, that protocol is not for sissies. May you continue to live well.

  4. Avatar Charlotte says:

    ps: Thank you for your service.

  5. Avatar asknod says:

    I did the Interferon one time in 07 and it almost killed me. I waited like you for the Sovaldi but still couldn’t take the Riba due to autoimmune issues. Six months of nothing. No side effects other than pruritis. I had a 64% chance of a win but that was far more than the 30% in 07. Finally, 44 years after my transfusion, I’m virus-free. It’s quite exhilarating to think we’ll die of old age after watching many of our clan crash and burn.

  6. Avatar Hal Johnson says:

    Thanks for pointing out–as you have previously–that despite shortcomings in funding and organization within the VA healthcare system, there are many dedicated, caring people who work within that system.

    This was a great piece of writing.

  7. Avatar Steve Towers says:

    Great piece, R.V. Congratulations on being Hep C-free after such a long grind. It feels like bad taste, raising a glass to your cured liver, but I’m Irish.

    :::raises glass:::

  8. Avatar Hollis Pickett says:

    Congratulations – that’s not an easy treatment protocol! I’m glad your doctor scaled you back to 24 weeks instead of 48 weeks. For anyone out there not reliant on the VA for treatment, there are other options available. If you have private insurance or Medicare (with supplemental coverage), you could take the drug you’re seeing advertised on TV – Harvoni (Gilead). No interferon shots – for many, no ribavirin – twelve weeks of treatment. Cure rates are running 95-100% – we’ve come a long way, baby! I wrote an eight-part series which A News Café published a few years ago (thanks again!). If you would like to know more about your liver, conditions that affect your liver and especially more about Hep C, you can find those articles by searching for “Your Liver, Your Health” – Part I is at the bottom of the list. Everything in the articles is still valid EXCEPT FOR the information about treatment.

    I strongly urge everyone to get tested for this silent, insidious condition that can nuke your liver – there are many, many folks out there who are infected and don’t know their status. You will probably have to ASK your doctor to test you – this is not a routine test done in the course of an annual physical.

    Anyone who wants more information can contact me at: info@lashgroup.org I’ve been running a support group here in Redding for almost ten years now. I’m happy to come and speak to your group, large or small, or meet with you privately to discuss your concerns.

    Hollis Pickett
    LASH (Local Area Support For Hepatitis)

    • R.V. Scheide R.V. Scheide says:

      my protocol was only 12 weeks, not 24. i dont know if i could make 24!

    • Avatar K. Beck says:

      I forget the details at this point, but my Internist demanded I get tested for Hep C a couple of years ago, I think, simply because of my date of birth! That was my only “risk factor”!…you know those dope head, sex crazed, baby boomers, you get the label whether or not it is accurate. So there is some mechanism out there that says certain people need to be tested. If you are at all concerned that you might have Hep C you might want to look into this.

      I am not sure if this is something Medicare does, or it is something Palo Alto Medical Foundation does (see below).

      I thought this was an unnecessary test but I lost the argument.

      Between Medicare and and my supplemental insurance I didn’t have to pay for the test.

      Test was negative.

      I just looked this up, it is the CDC recommendation:
      http://www.cdc.gov/hepatitis/hcv/guidelinesc.htm
      Adults born during 1945 through 1965 should be tested once (without prior ascertainment of HCV risk factors)

      I hate when my brain deletes parts of my memory!

  9. R.V. Scheide R.V. Scheide says:

    thanks everybody for reading and your comments. my hand is in a cast so i cant type well right now

    • Oh no! So sorry about your hand! 🙁

    • Avatar K. Beck says:

      Thanks so much R. V. for this article. Your writing is always flawless!

      Glad to hear something positive re: the VA. And to hear you are cured!

      I was going to add that to my last post, but I forgot. : (

      Hope your wrist is healed soon!

  10. Avatar Chris K says:

    I too contracted HCV (Hepatitis C Virus) from a blood transfusion I received in the early 80’s.
    This being in the early 80’s, I guess I’m lucky it was HCV and not HIV.
    If it would have been HIV, I’m pretty sure I wouldn’t be writing this right now.
    The blood supply was not being tested for either one at the time, in fact it wasn’t until 92 that they started testing it for HCV, so I’m sure we weren’t the only ones to find ourselves in this position.

    As for my three month treatment of Rebetol (ribavirin) and Solvaldi (sofosbuvir), I experienced very few side effects.
    I lost about 25 pounds and had a bout of insomnia which was treated with sleeping pills.
    No nausea, no flu-like symptoms, no headaches or anything like that, and above all no anemia which is evidently a common and very serious side effect of these medications and must be treated.
    I know, a lot of people out there would love to lose 25 pounds, but I certainly don’t recommend contracting HCV to do it.
    And I too began testing negative for the virus about halfway through my treatment.
    But the real big test is the one they give you around three months after you’ve finished your treatment.
    If you still test negative at that point (as I fortunately did), they declare victory and you can do your happy dance.

    Anybody out there who received blood before 92 should be tested for HCV.
    This stuff usually has no symptoms (as was my case) until your liver starts tanking, and by then irreversible damage has been done, so get yourself tested if you have any concerns!
    It’s just a pin prick and a blood draw, so don’t be a sissy.

  11. Avatar Chris K says:

    Oh yeah, another reason to get yourself tested is that people with untreated HCV are about five times more likely to develop liver cancer, and liver cancer is almost always a death sentence not to mention a nasty way to go.

  12. Avatar Hollis Pickett says:

    Chris K. and K. Beck – good comments! Those are, in fact, the CDC recommendations (everyone born betw ’45 and ’65). Consider, however, the other issue that was highlighted above. Hepatitis C was so named in 1989 – before that, it was known as NANB (non-A, non-B hepatitis). The blood supply was not declared free of HCV until about 1992. Back in the bad old days, people who donated blood were paid to do so – regular people and drug users alike. Because of that, anyone who received any blood products (whole blood, platelets, etc.) prior to 1992 is at risk – a much more inclusive group than ’45-‘ 65. Other risk factors: military service (especially treatment in the field), medical treatment or blood products received in more “third world” countries (in a time frame that includes today), tattoos, piercings, unprotected sex (especially Hep B), vertical transmission (mother to child during birth), using another person’s toothbrush or razor – think anything that exposes you to someone else’s blood.

    For Pete’s sake, people…..don’t be shy – just go get tested!

  13. Avatar Cathlene M says:

    Good article and comments! I just finished 12 weeks of Sovaldi and Ribavirin about a month ago and so far the lab results are looking very good. My hepatologist and nurse practitioner were excellent. Yes there were some side effects but it was doable. Drinking a lot of water helps. I was self-pay most of my life but finally got old enough to get on Medicare coverage. I agree that most everyone should get tested for Hep C at least once and know their status.

    A nursing instructor of mine died in 1980 from acute hepatitis after being stuck by a needle at work. My brother died 11 years ago from a combination of Hep C and alcoholism. Many people are living with Hep C and have no idea. They might feel fine, but if they got tested they could go through treatment before more damage is done.

  14. Avatar Mary Madden says:

    Great story. It is heartwarming to hear about positive outcomes. Thank you for your sacrifice & thank you for sharing your perspective.

  15. Avatar Chris K says:

    Right on Cathlene M, welcome to the survivors club.

  16. Avatar Robert V. Scheide Sr. says:

    A big thanks to the VA for curing my #1 son.

    v

  17. Avatar Hollis Pickett says:

    N. Ward – the initial test for HCV is an antibody test which comes back either “reactive” or “non-reactive”. Some people say “positive” or “negative”, but that terminology is not really correct. If you’re reactive for HCV antibodies, there is a second test that must be run to confirm or rule out a chronic infection – a viral load test……a test that measures the amount of virus in a milliliter of your blood. Any virus at all, you have a chronic infection. No virus, you do not have a chronic (long-term, ongoing) infection, your body “cleared” the virus on its own, but you will always be reactive for antibodies. (Caveat: if you’re reactive for antibodies but show no viral load, repeat that viral load test in six months just to be safe) If you have a chronic infection you need an additional test to determine your genotype (genetic variation) for HCV – genotypes are numbered 1 thru 6 and there are sub-types (1a, 1b, 1c, 2a, etc.). Your genotype will dictate which drugs you need to take to cure your infection and how long you’ll need to take them. You should also have an abdominal ultrasound (assesses the basic condition of your liver, spleen and gall bladder) and a Fibrosure test (a blood assay to determine your level of liver tissue scarring from your infection). For all of this initial triage work, you should either be seeing a GP who has lots of experience with this infection or (probably preferably) a gastroenterologist. You should have a complete blood panel, including liver panel tests, and including a test for AFP (alpha fetoprotein – can be an indicator of tumor activity in the liver).

  18. Wonderful story, thank you. I was wondering if you would contact me at Hep Magazine to discuss a reprint possibility.

  19. Avatar Hollis Pickett says:

    RV – you should contact Lucinda – she’s the real deal and has been a staunch advocate for progress in the viral hepatitis/HIV world for years!

  20. Avatar name says:

    I am assuming the drug they gave you was from Gilead, was it Solvaldi or Harvoni?

    Abbvie has a similar regimen, but I do not think it was approved until around January.

    • Avatar Hollis Pickett says:

      He indicated he took sofosbuvir – that would be Sovaldi. Harvoni is a combination of sofosbuvir and ledipasvir. These days (depending on genotype), most people are taking Harvoni with or without ribavirin, some genotypes are taking Sovaldi/riba. AbbVie’s drug combo, also taken with or without riba is call Viekira Pak.

  21. A. Jacoby A. Jacoby says:

    CURED! Such a weighty word and so seldom appropriate. Almost made your tale read like fiction . .. thank God we can file that one under ‘non-fiction!’ Love your writing.