The Laws and Cancer

Those of you who have reading my blog know that I have leukemia and I have been documenting my journey with the Dragon. In my case, I am chemo-resistant (chemo cocktails administered intravenously only have a 5% chance of success). I also have less than a 1% chance of finding a bone marrow donor. A clinical trial was my only hope.

The experimental drug Imbruvica (a.k.a. ibrutinib, PCI-32765) I have been taking the last 21 months has kept the cancer at bay. I am still not in remission, but I am better off than I was before. As soon as I stop taking the drug the cancer will progress.

The FDA approved of the drug November 2013 for the treatment of mantle cell lymphoma and in February 2014 for the treatment of previously-treated chronic lymphocytic leukemia (CLL). CLL patients with 17p deletion (poor prognosis) are supposed to be next on the approval list. That would be me. The good news is that it will be available outside of a clinical trial. The bad news is that I will not be able to afford it unless the laws are changed.

When a patient in Arizona has chemotherapy intravenously, it costs him or her a copay (about $30). When a patient has oral chemotherapy, it may cost him or her $4,000 to $8,000 per month, since the law presently does not include coverage under the umbrella of cancer treatment. The reason is because targeted oral cancer treatment was not invented when the law was written 13 or 14 years ago. The insurance companies have not legally had to cover the costs, so the patient has to come up with the money or stop taking the treatment.

I recently testified before the Arizona Health Committee on the importance of changing the law so that cancer patients have access to oral cancer treatments. Last Thursday night I returned from the National Institutes of Health in Bethesda, Maryland from a visit with my clinical trial team. I was greeted by the news that Arizona’s FACT (Fair Access to Cancer Treatment) Act passed the Senate Rules Committee by a unanimous vote. It is headed to the Senate floor and then to the Governor to sign.

This is good news, but does not affect those patients on federal health insurance. So my son Rocky Harris and I are flying to Washington, D.C. in May to talk to the U.S. Congress about cancer treatment access. He is going as a Leukemia & Lymphoma Society Board Member and I am going as a patient advocate. The bottom line is that cancer treatment is cancer treatment, whether it is administered intravenously or orally.