The far-reaching effects of clinical trial conversations

When I was first diagnosed with Hodgkin’s Lymphoma, my oncologist sat down with me to discuss treatment options.

There were two options for standard of care, she told me. I could get six cycles of chemotherapy, or four cycles of chemotherapy followed by radiation. I could also enroll in a late-phase clinical trial, which was testing the long-term results of rituximab biotherapy on Hodgkin’s patients with cancer cells that fit a certain profile.

Rituximab had already been approved for other lymphomas, and a published study showed improved results when this biotherapy was combined with chemotherapy. It also was fairly risk-free. Although various adverse effects do occur with rituximab, the most common is an allergic reaction, which they give Benadryl for during treatment.

I decided not go on this clinical trial because of concerns about the control group. However, rituximab intrigued me. I found the previous studies convincing, even though the prices for the drug were astronomical – more than $6,000 per dose, and I would need more than one dose. So I called up my insurance company, and they agreed to review my case.

They ended up paying for my treatment with rituximab, which makes good business sense. If I don’t relapse, my insurance doesn’t have to pay for the hassle. However, this is the key point: I would have never known about a vital drug if my oncologist had not mentioned a clinical trial. 

What else can we learn from my anecdote?

  • Conversations about clinical trials indicate a high quality of care. My oncologist gave me several options, one of which represented the cutting edge of cancer research.
  • Patient education and engagement matters. I had to be my own advocate to the insurance company, and it was precisely because I was educated and pushed that I was able to get the best treatment possible.

 

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