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The Hepatitis C Wall of Shame

The Hepatitis C Wall of Shame

The Hepatitis C Wall of Shame

Looking back at 2014, the hepatitis C community had much to celebrate. The year had already begun on a high note with the approval of Olysio and Sovaldi in late 2013; however, even better hepatitis C treatments followed. The FDA approved three treatment regimens:  Harvoni (sofosbuvir/ledipasvir), Viekira Pak (ombitasvir, paritaprevir and dasabuvir, along with the previously approved drug, ritonavir), and Olysio/Sovaldi (simeprevir/sofosbuvir). Life was looking up for hepatitis C patients.

Harvoni’s approval was the high point. A single-daily pill, taken for as little as eight weeks (although more often twelve) could cure hepatitis C. The side effects were mild, and the cure rates were high. It meant no more interferon or ribavirin for genotype 1 patients, formerly the hardest to treat. Amazing.

However, this good news was derailed by some shameful practices. The price of Harvoni is exorbitant, and state Medicaid plans and private insurers severely restricted access to this drug. Patients, who had been waiting for treatment for years, sometimes decades, were denied treatment because they did not have at least stage 3 fibrosis. Still worse were the plans that only approved treatment for those with cirrhosis. Some people were denied Harvoni although they had gone through previous interferon-based treatments, including horrific triple therapy with first generation HCV protease inhibitors.

The shameful practices and lousy hepatitis C news doesn’t stop here. There is more. Here is my wall of shame, beginning with the worst:

  • Michigan State Senator Roger Kahn and the Michigan Senate – Despite the fact that Senator Kahn is a physician, he introduced a bill that would make it a felony to not tell a sexual partner if you were hepatitis C-positive. It passed the Michigan Senate. In my opinion, Senator Kahn has nursed more unfounded fear about hepatitis C and increased the stigma.
  • Every insurance company and state Medicaid plan that has denied treatment to hepatitis C patients because their liver disease hasn’t progressed far enough. I don’t see you holding off treating diabetics until they have lost a few toes or their eyesight, or is that down the road? I get that you need to save money. However, I think you are targeting hepatitis C because it is associated with drug use.
  • Every insurance company and state Medicaid plan that requires patients to prove they are clean and sober for six months. This is wrong. It is discriminatory. Patients who have cancer aren’t denied treatment unless they can prove they are clean and sober.
  • Express Scripts – You aren’t going to offer Harvoni on your formulary. Seriously? What happens to those with genotype 1a and everyone with cirrhosis who can’t take ribavirin? Do you know how awful ribavirin is? Do you think it is acceptable to force patients to endure anemia, rage, insomnia, anxiety, and so on, so you can save money? Then there is the issue of pregnancy. Is it worth risking fetal death by denying Harvoni? I do appreciate the fact that you are offering treatment to people at all stages of fibrosis (except decompensated cirrhosis), but Viekira Pak isn’t comparable to Harvoni unless you have genotype 1b without cirrhosis.
  • Gilead Sciences – You began this mess with your pricing strategy. I want you to succeed; you deserve to succeed. But, did you think about what this would do to patients? Granted, you have been incredibly generous with your patient assistance plans and co-pay program, but that won’t help all the Express Script patients who can’t get your drug.
  • Maine Governor Paul LePage who said, “I have been trying to get the president to pay attention to the illegals in our country because there’s been a spike in hepatitis C, tuberculosis and HIV, but it’s going on deaf ears.”
  • Every legal official who arrested anyone with hepatitis C for spitting on him or her, along with every news source who reported these stories.

Honorable Mention goes to the American Association for the Study of Liver Diseases (AASLD) and the Infectious Diseases Society of America (IDSA) – The justification for denying treatment came from your HCV Guidelines. You did try to set the record straight, but the horse was already out of the barn. I respect you, and I appreciate you trying to mend the problem, but we need a more powerful voice than this. Please step up and lead us through this crisis.

When any of these entities take action to offer more to the hepatitis C community, I will remove their names from this wall. Let’s bring the wall down in 2015!

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{ 30 comments… add one }
  • Susan Birren Imperiale January 1, 2015, 1:13 PM

    Beautifully done, Lucia!

  • Susan Birren Imperiale January 1, 2015, 1:14 PM

    Beautifully done, Lucinda!

  • Rubye Jack January 3, 2015, 9:45 AM

    Beautiful! Thank you!

  • PSPam January 3, 2015, 6:42 PM

    EXCELLENT article Lucinda! Thank you so much for sharing and caring!

  • april burkett January 18, 2015, 2:24 PM

    thank you so very much for your article could you get a petition going so we can get it to the white house for some real action==god bless you

  • Kathy ogin February 7, 2015, 11:19 PM

    Thanks for bringing this to the public. All people with hcv deserve successful treatment. No one asked for this virus and should not have to beg to try to cure it!

  • Mike April 8, 2015, 12:38 PM

    Just finished 8 weeks of Harvoni.
    I want to help others achieve HCV RNA Undetectable.
    Let me know how I can get involved helping others.
    And I can’t thank Lucinda enough for the manner and depth of your assistance.
    You get a halo from my family.

    • Lucinda Porter April 9, 2015, 7:04 PM

      Congratulations Mike. This is a big accomplishment. It is wonderful that you want to give back. A couple of ways to help others are to get involved with the Hep Forums or other groups. Or you can submit your story to Hep Stories, which is a powerful way to inspire others.

    • Lee Sobczak January 28, 2016, 3:25 PM

      Mike,
      I live in the state of Michigan and I have Priory Health as an insurance company. Both have denied me coverage for Harvoni. I’m literally dying. I have end-stage liver disease, no cancer yet, and I have Crohn’s disease which makes Harvoni the ONLY medication I can take that will save my life. I am now disabled because of this and cannot afford the cost. Do you have ANY direction you can send me? Please help me live. I’m only 50….

  • kauri schmid April 10, 2015, 4:22 PM

    Well said, Lucinda! There is enough stigma from people who don’t know better. People in leadership roles have a responsibility not to make it worse for victims of this insidious, potentially life-threatening illness.
    Thanks for great advocacy.

    Kauri

  • David Lennox April 18, 2015, 1:14 AM

    Denying treatment for a fatal disease is tantamont to imposing a death sentence. Capital punishment is unconstitutional in the State of Michigan and in any case requires due process (a jury trial). So what denial of treatment amounts to is, insurance companies denying life saving treatments are acting as judge jury and executioner. This violates the United States Constitution.

    • Lucinda Porter April 18, 2015, 10:09 AM

      I would add that I think it is a form of torture, which violates U.S.and International law, to say nothing of common decency.

      • David Lennox April 21, 2015, 8:13 AM

        It is definitely a form of torture. Living with a disease that is fatal while knowing that a cure exists is like living on death row while knowing that there is no appeal. One thing that is certain is, those who deny this treatment to others are those who either don’t need the drug themselves or who have access to it.

  • Will July 18, 2015, 7:51 AM

    Thank you….

  • Miz. E. February 26, 2018, 7:57 AM

    Thank you for putting this so elegantly. I was diagnosed with HCV in 1990. I didn’t engage in at risk behaviors so my suspicion is I was infected during a medical procedure- in the 1970s. Nonetheless I’ve even been ostracized by my family. I was approved for Harvoni because I’m in stage 4 Fibrosis which is one foot in the grave and one on a banana peel. But I’m grateful. I truly am. I pray for others that this treatment isn’t too little too late. Thank you.

    • Lucinda Porter February 26, 2018, 8:47 AM

      Thank you for writing, albeit heart-breaking to hear. I wish you the best with your treatment. Please, please, please understand that you still need to be closely monitored for liver cancer, EVEN if your hep C is cured. Cancer risk drops if you are cured, but when you have stage 4, you still are at risk. Early detection is key to being able to live a long and healthy life.

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