Oral Cancer Drug Access for Medicare Patients

  L: Mary Catherine Moffett, MIDDLE: me, R: Thea Zajac

PHOENIX, ARIZONA

Monday, June 27, 2016 I had the pleasure of meeting with Mary Catherine Moffett, Advocacy Director of the national Leukemia & Lymphoma Society (LLS), and Thea Zajac, LLS Director of Government Affairs. The discussion focused on Medicare cancer patients’ access to oral cancer drugs.

Members of the national LLS and I are going to share stories of Medicare and non-Medicare patients who received access to oral cancer drugs through their insurance and others who have not with U.S. Congress members.

Please email your stories to me at DrLVHarris@gmail.com and use the subject line: ORAL CANCER DRUG ADVOCACY. I have a September 1 deadline. These stories will be sent to Washington, DC.

Please include the following in your e-mail stories:

• Name, age, gender

• Name of cancer

• Are you on Medicare? If not, what insurance?

• What is your prescription insurance? Secondary insurance?

• Have you tried to get your oral cancer drug covered by your insurance company? What is your co-pay? Is it affordable to you?

• What is your experience? How is this financial burden changed the quality of your life?

It is remarkable all the breakthrough cancer treatments that have been FDA-approved and tested in clinical trials for leukemia and lymphoma patients the past several years. That is what medical innovation is all about. My hat goes off to all those dedicated medical researchers, who persevere and do not give up on finding a cure. I am also forever grateful to the stakeholders and organizations providing funds to make these innovations possible.

Love and gratitude from the lab rat – me. As many of you know, I am here only because I became B22 in a clinical trial with an experimental drug for patients with a very poor prognosis. So the oral cancer drug is working and I have access to it through my clinical trial, because I am being observed for any long-term effects. Originally I was supposed to have access to the drug as long as it worked for me -- until I relapsed. I breathed a big sigh of relief. That is, until last April when I had to sign a revised contract stating that at any time without any reason I could be pulled from the study. Be still my heart… on to Plan B and Plan C.

But before I do, let me explain the costs of newly FDA-approved drugs. Many are $100 a pill and if a patient is prescribed three a day… You get the picture… over $100,000 a year -- $109,500 to be precise. Because of the poor prognosis cancer diagnosis, and having to search the United States for a cancer expert, I had to leave my university career before I was able to qualify for retirement benefits.

The Leukemia & Lymphoma Society (LLS) has been instrumental in pushing legislation through the states for affordable access to oral cancer treatment by promoting that insurance plans not require patients to pay more out-of-pocket for cancer medications based on how those drugs are administered. As of today, 40 states and DC have passed these state laws. Many of the drug companies are generous in their ability to help subsidize the cost of expensive Tier 1 drugs for patients with insurance other than Medicare.

So Medicare has become an insurance challenge. It is a federal program. And unfortunately, the majority of leukemia and lymphoma patients are on Medicare.

Two years ago, a number of us from Arizona’s LLS met seven members of Congress face-to-face to discuss passing a bill so that oral cancer treatment would be treated the same as intravenous cancer treatment. Why shouldn’t it be? After all, cancer treatment is cancer treatment. LLS hired a research firm to confirm that the medical costs of treating a patient on an oral cancer drug as opposed to one who did not have access and became ill is about $2 more. The lobbyists backed away and the bill had no one opposing it. We encouraged the lawmakers to sponsor the bill and get it through Congress since it had no opponents. The bill just sat there gathering dust.

Today there is a bill in Congress that expires in December. It is called the Medicare Part D Beneficiary Appeals Fairness Act (HR2624 and it’s Senate companion S1488). It allows a cancer patient to negotiate a Top Tier drug to be more affordable.  It is not exactly what I wanted, but it is a start. It is sponsored by Senator Bill Nelson (FLA). Kudos to Rep. Raul Grijalva (Arizona District 3) for being the only Arizona co-sponsor. LLS is going to re-introduce the bill to Congress in January. All I hope is that cancer patients in the future will be able to benefit from this, and that politicians remember that they work for us.

So here is one of our plans. Several of us at LLS are going to have to pound the pavement AGAIN and begin in Arizona to get the ears of Senators Jeff Flake and John McCain, and Representatives, such as Ann Kirkpatrick (Az-1) and Kirsten Synema (Az-9).

I am in contact with several national insurance assistance experts and will be reporting on what I find out that benefits Medicare patients, who will be or are presently taking oral cancer drugs. That will be another blog.

We need your stories in order to get this bill through the system. Let’s “get’er done!”