This problem is especially true of Lymphoma. Lymphoma is the 5th leading cause of cancer in the U.S., but it is divided into 40 very rare and highly diverse diseases. It includes Burkitt's Lymphoma, the fastest growing of all cancers, as well as Chronic Lymphocytic Leukemia (CLL), one of the slowest cancers. A recently article in Oncology Business Week stated, "While all lymphoma types can be cured or managed as a chronic disease, its complexity and variation does not allow for a one-size-fits-all treatment approach. Instead, it necessitates highly specialized and individualized approaches."
The fact is that these kids do worse under protocols than under individualized care. However the unbending adherence to protocol in most hospitals is increasing. Unfortunately the government is not helping. The health care plans promoted by the presidential candidates all focus primarily on cutting costs, which hurts research and places more pressure to use the assembly line approach to health care.
There are some very cool things in the research and trials, such as "smart bombs", capable of searching and destroying specific cancer cells. Baxxar is a "smart bomb" designed to destroy all white blood cells with CD-20, the source of Burkitt's Lymphoma. Kill all the CD-20, and you kill all the Burkitt's. There are many treatments out there, but they are not accessible to most kids due to lack of funding and access to clinical trials. Even drugs that have been around for years are being withheld. Rituxin has been commonly used for Burkitt's for over 9 years. The head of oncology for Stanford University Hospital said it is the closest thing to a miracle drug Burkitt's has ever seen. However Tyler was denied access to the drug because of the hospital's policy toward the clinical trial. We found out much later that the basis for the policy is financial, not medical.
So what is the solution? I think one of the first steps is public awareness. Bob Piniewski, AJ's dad, has come up with an idea. He would like more people to hear the stories of AJ, Tyler, Kylee, Brett, Olivia, Sinjin, and others. These are real kids, real families, real stories.
His concept is simple:
- Create a petition to all the major TV news magazines urging them to devote time to childhood cancer
- Create, and on the show promote, a book by the parents describing our children, the lessons they taught us and how they impacted those around them
- And all book proceeds go to CureSearch, to find a cure.
- Challenge 20/20, Dateline, 60 Minutes and others to produce the show. Collect and FedEx a million signatures to them.
Here is where you come in. If you agree, just click below and sign the petition. if you would like to know more of AJ or CureSearch, their links are to the right.http://www.thepetitionsite.com/1/CureChildhoodCancer