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Living with Leukemia

Posted Oct 27 2009 5:08pm

A friend of mine, happily a really good writer, is living with chronic leukemia. Today, it’s a treatable disease, but only for the rich or the poor. If you are poor and are on ACCCHS (Arizona’s Medicaid ) Gleevec, the miracle drug that has converted leukemia from a death sentence to a chronic condition, can be covered depending on who your insurance plan is. If you are rich, you can pay to be on an insurance plan that does pay for Gleevec or pay $50,000 a year out of pocket. In the middle, you are often on your own. In every case, treatment is not a given.

When Pat was diagnosed, she was “temporarily” unemployed. That made her eligible for ACCCHS. To underscore the need for univeral coverage, insurance, portability, every once and a while I reprint her own blog posts here so her experience with the current system can be widely shared. Because I have friends in Canada who also have cancer, and are also getting expensive, life-saving meds, I have an up-close-and-personal look at how the two systems work. Derek is on a clinical trial in Vancouver, and gets what he needs immediately and without question. Daniel’s mom is in Montreal, and is also treated without question and with the urgency required for her condition.

But here’s Pat, in the greatest country in the world:
Today I have three Gleevec tablets left, and have spent two weeks trying to get my next refill. I’m dealing with insurance issues and trying to avoid a lapse in medication which would cause the side effects to go back to the worst levels again.

I changed to a new health plan to be under the care of my long term primary care physician. The new plan’s formulary does not include Gleevec. This is a list of medications covered by your health insurance plan. If a drug is not on your plan’s formulary, your insurance company may not cover it and you have to get additional approvals or you will have to pay the full cost out-of-pocket. Gleevec, as you know, is $4,500 for 30 tablets.

Health Choice Arizona said they could not give me information on whether they would approve the drug, and that I had to contact the oncology practice to find out the plan’s history with the drug. That seems ridiculous, doesn’t it?

The staff member from the first oncology practice refused assistance and said it wasn’t her job. The staff member I contacted by phone never returned my call. Doctor D then wrote a new prescription which I took to Walgreen’s on Monday. The pharmacist got a “no” from the insurance plan via the computer and then did nothing else. He gave me an 800 number to call so that I could take care of this myself. He refused to do anything except tell me they weren’t going to do anything. (I wonder what his bosses would think about his actions leading to Walgreen’s losing business worth more than $50,000 a year for several more decades.)

Remember, Pat is sick and lives alone. Weakened, she had to advocate for herself. She changed oncologists mid-treatment, which is not easy to do.

On Wednesday I saw my new oncologist and asked for a new prescription. His medical assistant, Laurann, told me she would take care of it. When I asked what I needed to do she said I didn’t need to do anything, that she would handle everything. She also said she hoped to be able to use a pharmacy that would deliver the Gleevec directly to me to make things easier. OMG!

Late today Laurann called to let me know that the prescription had been approved and ordered, and the new pharmacy would call to verify my address for delivery. She also provided the company’s phone number in case there were any problems.

Laurann exemplifies the type of medical professional you want on your side when you’re seriously ill. Someone who treats you as a human being, not just as a disease or like a number. Someone who knows what’s needed and how to get it done. Someone who says they will do something and then keeps their word. That’s why she’s one of my new heroes, and I’m sure she’s a hero to other cancer patients as well.

Pat shouldn’t have to be so strong when she’s weak. American can do better than this.

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