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Undermining the Foundations of Access to Essential Medicines

Undermining the Foundations of Access to Essential Medicines
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Published on November 1, 2017

As reported last week and setting myeloma Facebook groups abuzz, the co-pay program for myeloma patients that was funded though The Leukemia & Lymphoma Society (LLS) has run out of money. This leaves untold thousands of patients unable to afford critically needed cancer medications. Understandably, this has created anger, concern and fear about the future. Here’s what we at Patient Power know and what we are trying to do near- and long-term.

First, we are embarking on a trip back East to meet with at least some pharmaceutical companies and their advisors. We will talk to them about increasing their contributions to the LLS and other funds, to keep the co-pay foundations solvent and uninterrupted.

However, we understand that this is a long-term problem that requires long-term solutions.

Let’s start by looking at why there is a need for co-pay foundations at all. I had a heartfelt talk last week with a woman who helps patients get stem cell transplants when needed. She expressed profound concern that after the transplants, many of the patients could not afford the follow-up maintenance medication that was prescribed.

Part of the response is in the question itself. Namely, “after the transplants many patients could not afford the maintenance medications.”

Stem cell transplants are expensive to say the least. They can cost up to $800-1,000. For most of us to pay for that on our own, would require a bank loan the equivalent of a jumbo mortgage. The fact is, they are largely covered by insurance, and that’s where the system breaks down. Insurance covers the costly, debilitating and potentially risky transplant, but puts up barriers including high co-pays when it comes to medication—including medication that can, in some cases, alleviate the need for transplant and/or keep us out of the hospital.  

Insurance works best when it covers our expenses without these barriers. As Greg Simon, Executive Director of the Cancer Initiative for the Biden Foundation and a CLL survivor, told us in an interview, “Some people like me have good insurance. Even though the cost of my drugs per monthly treatment was $30,000 to $40,000, my co-pay was very affordable.”

This is not to support or condone pharmaceutical pricing practices. But that’s a separate issue, and we’ll continue to discuss it. But let’s face it, like hospital bills and doctor bills, even if the prices were cut in half, we would still need good insurance. That’s why we’re also working with the Aimed Alliance and their campaign. The Aimed Alliance has called on trial attorneys to help patients when health insurers violate consumer protection laws.  The Alliance cites insurance practices such as “adverse tiering that requires the highest level of out-of-pocket cost sharing” as potentially illegal. 

At Patient Power, we will look for and work with groups fighting laws to stop co-pay foundations. Earlier this year, a law was killed in New Hampshire that would have stopped co-pay assistance, stating: “No prescription drug manufacturer doing business in New Hampshire shall establish a co-payment reimbursement program or otherwise offer to pay, waive, or reimburse a patient for his or her insurance co-payment.” If similar legislation is pending in your area, let us know so we can take steps to intervene.

Also, note: When a pharma contributes to a disease-specific fund the money could very well support someone on a competitor’s medication. No earmarking of money is allowed.

Finally, let’s stop rumors. One person wrote to us that DOJ and IRS investigations as the reason for the myeloma fund shutdown. The LLS says simply, “The fund ran out of money earlier than anticipated because of an onslaught of new patients applying.” As evidence that funding and not investigations is the reason behind this, LLS funded co-pay funds for other cancers remain open.

There is much wrong with the system of co-pays, including the fact that they are based on a prescription’s list price, when the insurance company pays for the drug at a discount. The system is broken, and we will work with you to get it fixed.

As always, I welcome your comments and differing perspectives based on facts. Send them to

Wishing you and your family the best of health!

Andrew Schorr
Co-Founder and President, Patient Power

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.


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