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Expert Interview: Working with a Patient Advocate and Mental Health Experiences

Everyone’s experience with hepatitis C is different. If you’d like to share your story, click here. You can also click here to learn more about sharing anonymously. This week, we’re featuring Daniel’s story, and focusing on his experiences working with a patient advocate, and how hepatitis C impacted his mental health.

What was your experience working with a patient advocate?

“I was required by my insurer to have an advocate during the treatment process. His focus was primarily on the medication, what it is, side effects, how and when to take it, what happens if you miss a dose, how to order the next round and the schedule of mandatory meetings. For the most part, this is what we did. The one exception pertains to a long trip that required 2 months of medication. The protocol was to give only 30 pills, enough for one month but my trip exceeded 30 days. The advocate had to coordinate with my insurer, get a waiver from their policy, and ensure the medication was available prior to my departure. In my case the advocate was very supportive, patient and responsive. I think for someone like myself, who knew very little about the treatment process, he was a go-to source, often easier to connect with than my doctor.

Did you experience depression or anxiety related to your hep C?

“Yes. There was certainly anxiety caused by the possibility that my liver could fail and I’d be facing a transplant, death, or other health issues. I think the anxiety is normal, though challenging since it’s somewhat unpredictable, and thus quite disruptive.

There were instances of slight depression, especially early after diagnosis when the treatments were quite disruptive and not often successful. Not knowing if a new treatment would be developed was depressing because for me, it became a waiting game. My doctor and I agreed to wait for a treatment to emerge. Later, when my physician informed me about the most recent treatments, it was wonderful news. My relationship with and admiration for my doctor helped me manage both anxiety and depression, since I believed her and I should be patient for a new treatment. Luckily, my hep C type was not aggressive, so I had time to wait. I also exercised a lot which is a known method of reducing depression and anxiety, had a very supportive community of friends and family, and was able to work at what I love. My levels of anxiety and depression were very low and manageable. For someone with a much more severe form of hep C, the levels of anxiety and depression would understandably be much more debilitating.”