OPINION – June 11, 2013 -- I never imagined I would hear these words – “You have cancer. A tumor in the brain.” Lying on the hospital bed, paralyzed on the right side of my body, I gasp! The doctor continues with – “It’s a rare cancer – Primary Central Nervous System Lymphoma. Right now you are looking, at most, a three week survival.”
My family and I are in shock. Can’t really comprehend what he is saying – I’m dying? I don’t feel like I’m dying. His next words were a little more reassuring – “OHSU treats this type of lymphoma and has had great success with it.” I was off to OHSU.
The June, 2013 issue of Scientific American has an article on Blood Brain Barrier Disruption (BBBD), pioneered by Dr. Edward Neuwelt, at Oregon Health & Science University in the early 1980’s. BBBD is a viable brain cancer treatment at OHSU and around the world.
August 2, 2007 I underwent the first of 24 disruptions to my brain. The procedure opened up my Blood Brain Barrier allowing chemotherapy agents – carboplatin and methotrexate – to pass through annihilating the cancer cells. Whole brain radiation therapy can temporarily control the cancer, but I would have had significant permanent side effects to my mental functions, and regular IV chemotherapy is not able to pass through very easily to the other side of the brain barrier.
My insurance company said it would not cover the BBBD procedure because it was experimental/investigational. They would cover whole brain radiation and systemic chemotherapy, which I felt would not have done anything to the cancer because this type of treatment would not get to the other side of the blood brain barrier! The insurance company was, however, covering a younger woman having the same BBBD procedure at OHSU under Dr. Neuwelt, and, they had paid for previous treatments for other patients at OHSU.
Had I received whole brain radiation therapy and systematic chemotherapy, I would not be the ‘whole’ person I am today. More than likely with the treatment suggested by my insurance company and other oncologists in the Oregon medical community, I would eventually have short term memory problems causing difficulties in everyday tasks. My quality of life would have been nil.
Many oncologists do not deem this procedure as experimental/investigational and have sent Dr. Neuwelt patient referrals from all over the United States. Dr. Neuwelt also has helped develop the procedure at Ohio State University, University of Minnesota, University of Oklahoma and the procedure is also being done in Sweden.
There are a number of ‘survivors’ of Primary Central Nervous System Lymphoma that have been living 25 years after treatment. This is my sixth year in remission.
Scientists are working to find cures for some of the cruelest diseases out there through the blood brain barrier. Should insurance companies tell doctors their patients cannot have a treatment because the insurance company says it is experimental/investigational? I think not. Sounds like the bottom line to me.
What will happen to those patients who are diagnosed with Primary Central Nervous System Lymphoma, Alzheimer’s, Multiple Sclerosis, Parkinson’s or other maladies with the medical community having the knowledge to give them a treatment to ‘cure’ but their insurance company says “no. It’s experimental/investigational.
The naysayers will be on the doorsteps of the nearest medical facility treating their disease. No one is immune. You just think it won’t happen to you.
Image for this story by wellcome images (CC BY-NC-ND 2.0) via Flickr.
Joanie Lafferty is retired and lives in Las Vegas, NV. with her husband, Peter.
