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Advocate Experiences: “Not Sick Enough for Treatment”

Hepatitis C affects more than 70 million people worldwide, and over 3.5 million Americans. Sadly, however, due to treatment costs (as well as other factors), many patients are denied treatment. Sometimes, insurance companies will only pay for treatment once liver damage has advanced.

To learn more about common barriers to treatment, we asked our HepatitisC.net advocates, “Did your doctor (or insurance company) ever say that you ‘weren’t sick enough for treatment‘?” Check out their responses, or comment below to share your own experiences.

From Connie

“During an insurance switch many years ago, I was forced to change doctors for 1 year. I had done 2 previous treatments that were not successful. The new doctor told me I needed to accept the fact that nothing could be done for me. I told him I didn’t agree and changed doctors. I was able to change doctors and do my third treatment, which brought me the cure. If you have a doctor and healthcare team you don’t feel confident and comfortable with, change.”

From Daniel

“No, and I’m a good example because I didn’t have active hep C. The biopsies were consistent, and my strain was considered relatively slow in its virility. My type was also very responsive to the available medications and neither my physician nor insurer indicated any hesitation. My doctor did sway me away from some of the earlier treatments (because the side effects were so extreme), and she suggested I wait for 10 years until better treatments emerged on the market.”

From Daryl

“Unlike many have experienced, I did not suffer with the stress of being told I was not sick enough for treatment because I was, but I have certainly talked to many people who have experienced the frustration, and although we have seen some improvements in treatment access there are still payers and providers who restrict access.”

From Kim

“Back in early 2006, it was recommended to me NOT to treat. Back then, it was the horrible regime of interferon- A very bad side effect regime that many people avoided because of the harshness of this medication. Although I watched my mother die of hep C, I wanted any type treatment; However, the doctors said that because I was stage 1 ,they recommend waiting. Fast forward to 2010: I was hospitalized and found to now have stage 4. Having a new liver doctor, he immediately put me on interferon and ribavirin. After being on this treatment for 12 weeks, I was pulled off for non-responding. Later, I went on a clinical trial to cure my hep C. Today, I am seeing many being turned away because their insurance companies are saying they are “not sick enough” yet to treat. As a hep C advocate, I am trying to reach out to various health insurance companies sharing that the cost of this disease is much more than the treatment to cure it.”

From Sue

“No doctor ever told me that I wasn’t sick enough for treatment. When diagnosed, I already had cirrhosis. However, my work in the hepatitis C community has shown me how many patients are denied treatment because they aren’t sick enough. When this happens, some patients just give up. Others make contacts out of the country to buy generic drugs overseas. There are also foundations that may help some patients access care. These organizations can be found online or by calling one of the hepatitis C advocacy organizations who can share phone numbers of people working to help hep C patients access care when their insurance companies turn them down. Lastly, some patients are lucky enough to find acceptance in to a clinical trial. That is how I was finally cured after living with hepatitis C for 47 years.”

Comments

  • Tash
    4 weeks ago

    This is a huge issue in Wisconsin right now. I know many who have told me they were told they’re “fine” & can wait more years for follow-up testing especially in the prison system. I was told I wasn’t sick enough but that only made me more determined to get my way & I got lucky a company had stepped in & helped me overpower my insurance (though it was not easy even with a great medical team & an entire pharmaceutical company behind me) & cured me. Here, you must be in F3 to qualify…. I just don’t understand how things still haven’t changed 5yrs later even though there’s more cures that cost way less than when I was fighting in 2014-15.

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