Thursday, May 8, 2008

Cancer Research and Awareness

I have written a lot about the need for more cancer research. Because of hospital and insurance company cost cutting measures and increasing doctor to patient ratios, most hospitals have begun relying almost exclusively on protocols. The problem with protocols is that they are treating individual people with individual deseases as though they are all the same "statistical model" patient. As doctor Stephen Schneider of Stanford University states, "Over committed doctors are often tempted to follow a battlefield triage approach, treating every patient according to the protocol and avoiding the extra hours it would take to fashion individual treatment."

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.


pietro_ceccano said...

I am in my 40's, having been diagnosed with a rare form of lymphoma (Waldenstrom's Macroglobulinemia)..and was successfully treated with combination drugs, including Rituxan. The rituxan has put me in relative remission for the past 3 years. When I read your posting and saw that the hospital failed to support treatment via rituxan via Rituxan..I was truly amazed and shocked. Keep fighting! Have you considered enrolling in clinical trials or contacting medical researchers at major institutions about treatment with rituxan?

Anonymous said...

This is one of the things we love about your family - Your desire to make a difference!!

We have signed the petition and have forwarded it to everyone in our address books.

Keep Pushing....

You remain in our prayers,

The Smith Family - Laura, Doug, Elle & JB

Anonymous said...

I have signed the petition also..but, I would highly rx: you sent out an email to all of your contacts as I did with the website address for the petition. That way more people can be exposed to it and sign it.
fight to win!!!

Marianne La Rosa said...

I have a former college roommate from Miami U. who started a very successful pediatric cancer research foundation called, "Cancer Free Kids", in Cincinnati. I would encourage you to go to their website and contact the founder/president (Ellen Flannery). Ellen is a warm, funny, caring person whose daughter survived leukemia as a one-year old. Cancer Free Kids has done tremendous work in the Cincy area and their ideas would be invaluable to have. The link is Tell Ellen that Marianne from Miami sent you!

rammiei00 said...

i would just like to give my prayers and wishes for everyone. my sister passed away from Burkitt's Lymphoma when she was 15 it struck her quick with no signs. i hope that we can find a way to detect early and cure. i know how frustrating it can be, but be strong and know god is always there.

rammiei00 said...

i am writing to tell you to keep fighting and dont give up. my sister had burkitt's lymphoma and she got it suddenly with know signs. she passed away after only knowing about it for a month. we miss her dearly everyday and we wish we could have had an early detection and a cure. we'll pray for you and your email.