Oral Parity for Cancer Drugs (Part 2)
Check out Part 1 of Matt's series on Oral Parity for Cancer Drugs.
In late 2017, I stopped working to focus on my health and improve my quality of life. The non-stop fatigue from 7 years of treatment was dominating my life. I knew that by leaving work I would have to pay for my own health insurance until I am Medicare eligible. And then when I am Medicare, I’ll have to supplement it to ensure I can continue to see my doctors. Suffice it to say, taking this step does have me worried about my future ability to pay for my treatment. Myeloma is incurable and even with a stable disease, odds are I will always be doing treatment. And as I indicated in Part I, I take oral and infused drugs and I imagine this will be always be the case.
Stories of financial hardship
A few months back I was talking to a friend. He started the same treatment regimen as me about a month before I did. He’s on Medicare and we were talking about our insurance coverage (as cancer patients do). He said that he has pretty good prescription coverage with his policy and “only” pays $600 a month for his oral drug. And he pays this month after month. Compared to what others pay he said he was happy with that. I asked other patients and I’d hear similar stories of people paying shockingly high amounts for their oral chemo. I should note that many pharma companies offer co pay assistance on both oral and infused drugs. But that assistance is not available to everyone.
All these stories about the challenges faced by patients taking oral chemo got me thinking and investigating. I learned that 43 states have passed oral parity legislation that requires some insurers to consider oral cancer treatment the same as infused. But action on the state level only helps a small percentage of cancer patients. To have a truly impactful measure, change needs to happen on the federal level. In Congress, there is a bill, HR 1409 the Cancer Drug Parity Act, that aims to bring equity to the costs of cancer treatment. But the bill has been stalled in a committee for a couple of years.
I asked other patients why they think the bill was stalled. I was met with a lot of shoulder shrugs. We all have our theories. HR 1409 is a bi-partisan proposal and would truly save lives. So I decided to start a petition aimed at letting our elected representatives know that the Cancer Drug Parity Act is an important and life impacting issue. I had no idea what impact the petition may have, but I figured it was worth a try. It took a little while, but slowly the petition has gained some traction and we’re approaching 500 signatures as I write this. Additionally, I was, to my surprise, contacted by a local news station as well as the International Myeloma Foundation (IMF), both wanting to discuss the issue and the petition. It’s nice to know that we as patients do have a voice, and perhaps can help effect changes.
You can add your name to the petition on HR1409 to Congress here.
Finding some good news
And there is more good news. In early December, two U.S. Senators, from both sides of the aisle, proposed a Senate bill that mirrors HR 1409. I’ve copied the language (in italics) from an IMF press release and their link to take action below.
The lesson for me has been that we as patients need to advocate for our rights and that with our diagnosis comes an education that we never expected. 1 in 3 of us will likely be touched by cancer at some point. And issues like Oral Parity are significant and mandate our attention and our concern.
How long did it take to be properly diagnosed?