(I added the Senators from the Senate Appropriations Health Subcommittee to the list of key Representatives to target, if you are checking back)
Looking for something frothy and light from this entry? Check again next week. What you are about to read is deadly serious.
I don't know if you saw the video clip that aired last week on the ABC News about the President's budget request as it affects funding for clinical trials for cancer. There are (at least) two points to think about when viewing the clip:
1. The heads of the Children's Oncology Group will have to decide which clinical trials get funded and which don't, which means deciding which children get treated with the latest available options and which don't. At the proposed funding level 20 of the 90 scheduled trials will be canceled (22%).
2. Children like Erin with rarer childhood cancers will be one of the groups most affected by these cuts.
This stuff makes me mad.
Fifty years ago only one or two out of every ten children diagnosed with childhood cancer survived. Some very hard-working and compassionate doctors pulled together to build cooperation and trust in the clinical trial system. Today about three-quarters of all children with cancer are treated under clinical trials (this compares to about 2 percent--not a typo--two percent of adults that take advantage of trials). Because of the rapid expansion of knowledge about treatment afforded by the use of clinical trials, the survival rate across the board for pediatric cancers has risen to 78%. This is good news and good science.
It is also necessary. Pharmaceutical companies are not that interested in developing new drugs to treat pediatric cancers because the market is too small (12,500 new diagnoses each year). Without the motive for high profits, there is market failure. When markets fail, governments have the obligation to step in and provide incentives. That's why it makes no sense to me to cut funding for trials. AND I'm not talking about billions of dollars. I'm not even talking about hundreds of millions of dollars.
Taking $9 million dollars from the budget for pediatric clinical trials is not trimming "waste, fraud, and abuse," it is taking 400 children further from their dream of surviving the nightmare of having cancer.
Don't get me wrong. I'm glad we have the drug that Erin has taken for the past fifteen months that has kept her stable. That drug was developed (for adults) in the early 1970s and has been cleared for use by the FDA for over thirty years. What I'd really like is progress in clinical trials of some of the agents that are not cytotoxic (poisons). As it is, each month that goes by, Walter and I have to weigh the positives of Erin's current situation with the real possibility that taking even low-doses of cytotoxins for an extended period will result in secondary cancers and other health issues. Progress can not happen fast enough for children like Erin. That is why it breaks my heart when clinical trials are delayed or canceled.
On the advice of our Congressman, Chet Edwards, who has been one of Erin's staunchest friends, we are looking for people around the country to help get the message out. Writing your Senators and Representatives is good, BUT IT WOULD BE EVEN BETTER if you lived in one of the districts we are targeting. These districts are represented by individuals on the Appropriations Subcommittee that decides funding for the National Cancer Institute. Check out the list below and see if you live in one of these districts or if you know someone who does (I have listed the biggest cities I could think of in each district, so if you are geographically challenged you might can still figure it out).
If you feel moved by what I have written Click Here. This will take you to a place that has the email address of every member of Congress, by zip code. You can do this RIGHT NOW.
Wisconsin-7th (Wausau and Ashland look like the biggest cities)
New York-25th (Syracuse)
New York-18th (New Rochelle, White Plains, and Yonkers)
Connecticut-3rd (New Haven, Middletown, and Naugatuck)
Illinois-2nd (Chicago Heights, Park Forest, and Calumet City)
Rhode Island-1st (Providence, Bristol, and Newport)
California-34th (Los Angeles County, I'm not sure how much of LA,
looks like east and south east)
California-9th (Berkley and Oakland)
New Mexico-3rd (Santa Fe, Gallup, and Clovis)
California-15th (Santa Clara)
Minnesota-4th (St. Paul)
Ohio-17th (Youngstown and Kent)
Ohio-16th (Canton and Medina)
Pennsylvania-5th (State College and Lewiston)
Florida-15th (Kissimmee and Vero Beach)
Idaho-2nd (east part of Boise, Twin Falls, and Idaho Falls)
Montana-1st (whole state)
The following Senators serve on the Senate Appropriations Health subcommittee:
Tom Harkin (Chairman) (IA)
Daniel Inouye (HI)
Herb Kohl (WI)
Patty Murray (WA)
Mary Landrieu (LA)
Richard Durbin (IL)
Jack Reed (RI)
Frank Lautenberg (NJ)
Arlen Specter (PA)
Thad Cochran (MS)
Judd Gregg (NH)
Larry Craig (ID)
Kay Bailey-Hutchison (TX)
Ted Stevens (AK)
Richard Shelby (AL)
Note: KBH has not signed on to the Conquer Childhood Cancer Act yet,
and needs to hear from all us Texans.
If you don't know what to write, you can go to CureSearch.org for more details. I also found this article by Liddy Shriver to be useful if you want even more statistical ammo.
Okay. So I can't resist a little froth and light. Yesterday was PPR Day! Erin and her buddies pulled on their PPR shirts and hit the wilderness behind the dam. I understand there was a problem again with the rule following in the Houston Affiliated Group of the PPR. More punishments were meted out.