Cancer Care....for the upper crust only?????

Cancer Care Crisis

Check out the report above, addressing how difficult it is to get real, up-to-date cancer care where most Americans live. Not that any of this is news to those of us dealing with the problem. I live in a decent sized city....not a small town or out in the boonies! Yet there was no oncologist available to me who was particularly knowledgeable about melanoma and certainly there was no access to the newest or trial medications and treatments. I am only a two hour drive from Emory in Atlanta and the same from Sarah Cannon and Vanderbilt in Nashville. That is enough of a trek, but at the time of my diagnosis as well as the point at which I progressed to Stage IV, none of those facilities had treatments or trials that I could participate in. Now part of that demonstrates how far treatment for melanoma has come in the past two or three years. (Ipi was not even approved when I became Stage IV!) So, I've traveled to Moffitt in Tampa. Luckily, my sisters helped make those every other week trips happen for 6 months. I already worked Mon, Tue, and Wed at my job, so the Thursday/Friday schedule worked out. My husband was able to continue his full time work by virtue of the help of my sisters as I mentioned, but also because when he needed to go with me, he was able to move his hours into a combination of day and evening shifts, often working from 7 in the morning until midnight or even 2am!  With all of that...I realize I was VERY lucky. We could afford for me to make the trips. This included the car trip to Atlanta, airport parking fees, flight to Tampa, car rental, hotel, food, flight back to Atlanta, and drive home again! NONE of these things were paid for by my study or insurance.  We could afford to pay the copays for the REQUIRED scans, doctor visits, and to Moffitt.    It has not been cheap and you have to pay to play. The idea that participating in a clinical trial is free except for the price you pay in being a rattie with NO recourse should you die or grow three heads (Yes....you really do sign papers that neither the doctor, drug company, nor the hospital can be held liable no matter what happens to you over the course of the study!) is just not usually the case. The NIH, as I understand it, covers more things for their trial participants. There are groups and institutions that can help with travel expenses for cancer patients...but I figured there were folks who needed such assistance more than I. And, some institutions have places for patients and their families to stay when they need to be in town for treatment.....kind of like Ronald McDonald Houses for families of children who are hospitalized.

When I see the other patients at Moffitt, I don't see many minorities or obviously poor individuals. There are many elderly patients and I think Medicare does do a better job at covering cancer care than some private plans (and institutions are better at accepting what they will pay!). In fact, in my first meeting with Dr. Weber, when the magnitude of the financial costs that would be accrued was just beginning to dawn on me, I asked him if he noted that his patient population was skewed as they were unusually affluent compared to the greater community when he wrote up his reports. A lot of research notes demographics like that. He did admit that he realized it was a problem, but I've yet to see such documentation in his study outcomes (or in those of any of his oncologist peers, for that matter!).

I'm not sure what to do about my rant and this problem. Pati probably said it best...

"What is my life worth?" How much would you pay...for YOUR life? The life of a loved one? But....I also add...why must you pay for these services.....when you truly CANNOT? What are we to do with those in need, but without access? Pretend they do not exist? Pretend that we don't know they are there? Is this who America claims to be? Is this who we want to be?

I don't think so. We can do better. - c