Patient Power: A Crisis in the Myeloma Community

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BY CYNTHIA CHMIELEWSKI

Recently, I received an urgent text message from one of my dear friends.  “Did you hear LLS (the Leukemia and Lymphoma Society’s) Co-Pay Assistance Program is closed to multiple myeloma due to the demand? Is this true? Have you heard? I count on the LLS.” At that point I hadn’t heard anything about the fund being closed. I figured there would be some warning if this was true so I didn’t give it a second thought. I suggested she call the LLS if she was concerned.  She was afraid to do this, because she feared she would hear news that she didn’t want to face.  By the next day, the Internet was buzzing with this unexpected news.

It was true The Leukemia & Lymphoma Society (LLS) abruptly closed the Myeloma Co-Pay Assistance Program.  The Myeloma Co-Pay Assistance Program offered financial help toward blood cancer treatment-related co-payments, private health insurance premiums and Medicare Part B, Medicare Plan D, Medicare Supplementary Health Insurance, Medicare Advantage premium, Medicaid Spend-down or co-pay obligations.  This program was a godsend to many in the myeloma community. Myeloma treatment is expensive. Funding for the LLS Co-Pay Assistance Program is based on disease type. The Myeloma Fund of the Co-Pay Assistance Program awarded eligible myeloma patients up to $10,000.00 a year to help cover their treatment costs. Without this assistance many patients are unable to afford their insurance premiums or prescription and treatment co-pays.

The LLS said, “… this unfortunate occurrence led to inconvenience to many of the patients we strive to serve.”  The closing of this fund is more than an “inconvenience”; it is devastation to many.

What happened?  It was a perfect storm.  Earlier this year, two other co-pay assistance programs closed their myeloma funds. With the closure of these funds, the LLS received an influx of new applications from myeloma patients. The LLS accepted all eligible patients into their program. The LLS Myeloma Co-Pay Assistance Program was never closed to new applicants. Applicants received acceptance letters up until the day it closed.

The LLS Myeloma Co-pay Assistance Program started 8 years ago, and it is closely monitored by the Office of the Inspector General, which is part of the Department of Health and Human Services. At the time of the Myeloma Co-Pay Assistance Program’s formation, the LLS made the decision that this fund should be a pooled fund. The LLS believed that they would be able to serve more patients in this manner. In a pooled fund, the monies from the pharmaceutical companies supporting the myeloma co-pay assistance fund were put into one general myeloma account instead of individual patient accounts.  When a myeloma patient requested a reimbursement, the money was taken from the general myeloma account fund. This method of disbursement of funds worked for 8 years.

Over the last decade, myeloma treatment has evolved.  Treatment is more expensive than ever before.  Eight years ago, monoclonal antibodies for myeloma didn’t exist and doublets (two-drug combination therapies) were more commonly prescribed than triplets (three-drug combination therapies).  Eight years ago, patients weren’t living as long as they are today. Eight years ago, maintenance therapy was in its infancy. Patients weren’t treated with expensive oral therapies until progression.  They stopped treatment once a maximum response was reached.  Eight years ago, insurance premiums were less. Eight years ago, many patients didn’t use their entire award.

Recently, the LLS Myeloma Co-Pay Assistance Program depleted all its funds. The LLS was counting on additional funding from pharmaceutical companies to come in.  As of now, it hasn’t arrived.  Since funding was pooled that meant that not only was the fund closed to new applicants, but patients that were already awarded grants no longer had funding. This came as a shock to the myeloma community depending on these monies. They were in disbelief. Many had questions that were unanswered in the initial letters that they received informing them they no longer had funding available for them. The LLS published a Statement on Closure of the Myeloma Fund last week that answered many of these questions.  Some questions still remain unanswered.

Patients quickly scrambled to apply for funding through other foundations, but within days those funds were closed to new applicants.  Many patients have nowhere to turn. They cannot afford their prescription and insurance co-pays. They are worried and stressed. (We all know that stress is not a good thing for a cancer patient).  They need to make tough decisions—do I pay for my treatment, or do I pay my mortgage?  Patients with private insurance may be able to request assistance for prescription co-pays (not insurance co-pays) from the maker of their treatment. Patients on Medicare cannot get direct assistance from the pharmaceutical companies. Where should they turn to? Patients have shared their hopelessness in many of the online patient communities.

The myeloma community is in a crisis.  A call to ACTION is needed. It’s not time to point fingers.  It is time to work together. ALL stakeholders must come to the SAME table and brainstorm possible solutions. This needs to be done NOW!  It can NOT wait.  Pharmaceutical companies, advocacy foundations, research foundations, patients, caregivers, insurance companies, pharmacies, pharmacy benefit managers, medical professionals and government regulatory agencies need to work together. The system is broken. It needs to be fixed.  Patients need access to treatment. What good are the latest and greatest treatments if patients cannot afford to take them?

Who’s in? My hand is raised. Is yours? What can you do?  Educate yourself, but more importantly make you voice heard.  Write to your legislators about the current lack of co-pay assistance funding for the myeloma community voicing your concern that this is just the tip of the iceberg. Support legislation that will help reduce the cost of care and increase access to treatment. Contact pharmaceutical companies voicing your concern that you may be unable to afford your treatment.  Share your stories with anyone who will listen. Stories are very powerful. Use social media to educate your communities. Join coalitions of like-minded advocates. Take ACTION! Together we can make a difference.  There is power in numbers.

Cynthia Chmielewski
@MyelomaTeacherPatient Advocate, Patient Engagement

Andrew Schorr of Patient Power published this post first and has written an editorial on the undermining of financial access to medical care. To see this editorial, click here.

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Retired teacher, myeloma survivor, patient advocate and Twitter myeloma leader.

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