A few things have happened over the last couple of days to remind me of how cancer patients have more to worry about than whether we can beat our disease. 

  •          This past weekend, Esther and I attended a town hall meeting led by California’s conservative Republican congressman, Darryl Issa. The #1 issue people asked about was pending healthcare legislation and whether it would hurt patients. Cancer patients spoke up and they are worried about lifetime caps and limited access to expensive—but better—medicines.
  •          Today’s news is all about whether the pending legislation will limit insurance coverage or affordability to many more Americans. Cancer patients, specifically, are worried about the uncertainty, and that shows up “bigtime” in a current Cancer Drug Cost survey Patient Power has launched. With over 1,000 responses already, 67% of respondents say they are worried or very worried about paying for their cancer medicine now or in the future. Isn’t having cancer worry enough?
  •          New national legislation has been introduced (Oral Parity HB 1059) to have oral cancer medicines taken at home paid for by insurance at the same higher rate as medicines administered at the clinic or hospital. While some states have passed their own legislation, other conservative states like Tennessee have a fight underway. That’s where Patient Power members like Beth Mullin are joining other patients and are lobbying for passage but are up against skilled insurance company insiders.

My take on all this is that patients deserve the most precise, most efficient care. Increasingly that means state-of-the art tests and targeted – often oral – therapies. When that is done right, cancer patients can live well and longer and keep working and contributing to their families and their communities. It can save money when you consider the full cost of our care when we are hospitalized and disabled.

Oral parity makes sense. Perfected healthcare legislation that gives us all equitable and affordable access to quality care should be a right.

I recognize these are complicated issues, but clearly patients have a stronger voice than ever now, and we need to sound off. I think just maybe my Congressman Issa got the message the other day as patients shouted back at him. Maybe your congressman will too. Wherever you stand on these issues, please don’t be silent. 

Remember, knowledge can be the best medicine of all.

Andrew Schorr
Founder, Patient Power LLC

Please remember the opinions expressed on Patient Power are not necessarily the views of our sponsors, contributors, partners or Patient Power. Our discussions are not a substitute for seeking medical advice or care from your own doctor. That’s how you’ll get care that’s most appropriate for you.  

Comments

"I recently received an email from another group asking to send letters to my representatives regarding the proposed health act. Has this group thought about offering something like this so all of us continue to get the best care possible? I mention this because I had to buy insurance off of the exchange this year and was surprised by limitations that are available on the policies. I definitely don't want to go backward with regards to insurance available for people. Thanks for thinking about this." 

~John