To support our friends at Kids v Cancer, Nancy Goodman and Anne White, we are searching for advocates in Michigan. Here's why........


Dear PAC2 Michigan Members,


Hope…  it’s something all kids fighting cancer desperately need.  Please help us create hope for the kids fighting now, and the kids who will have to take up this fight in the future. We are creating a grassroots movement to get more funding for pediatric cancer research.  We are working on legislation called the Creating Hope Act of 2011. This Act will be pending in the Senate next week.  The goal of this legislation is to get some of the best minds focused on finding more effective drugs to battle childhood cancer. 

As you know, only ONE new drug has been developed specifically for a pediatric cancer, and approved by the FDA in the last 20 years.  Sadly, pediatric oncologists are left to make do, and treat kids with drugs developed for different, adult cancers.  Right now, there aren’t any market incentives for pharmaceutical companies to research and develop pediatric cancer drugs.  The costs of R & D exceed the profits the companies will recoup, because so few kids get cancer, relative to the numbers of people who suffer from other diseases.  It is pretty simple, pharmaceutical companies pursue the development of drugs that are profitable.  So, how do we get them interested in pediatric cancer?   We think the Creating Hope Act creates strong incentives, and will lead to a surge of R & D into childhood cancer.  Better yet, it will also help children suffering from other rare diseases.  


We are optimistic about this Act passing.  It has bi-partisan support in both the House and Senate, and most importantly, it does not require the spending of tax payer dollars.  It is modeled after a law that was passed to encourage R & D in another group of neglected diseases: rare tropical diseases.


Here is a brief summary of how it works:  If a drug company develops and gets FDA approval of a drug targeted for a Rare Pediatric Disease, including pediatric cancer, they will get a "prize."  They will be awarded a voucher for FDA fast-track approval of a second, unrelated drug.  They can then use this voucher to speed up FDA review of a blockbuster drug (e.g. hair loss, acid re-flux, impotence- whatever will sell).  They will be allowed to sell or transfer the voucher to a different company an unlimited number of times - making the voucher very valuable. The value is estimated to be in the hundreds of millions of dollars.   Finally drug companies will have an incentive to help kids with cancer!        


We need your help!  Getting this bill passed is a multi-step process, and it will require grassroots support from you and your friends.  Soon, we will ask all PAC2 families to contact their legislators, and seek their support for the act. For now, we are trying to get help from families in Michigan.  We would like for Congressman John Dingell to be one of the lead co-sponsors of the legislation.  He is the longest-standing member of the U.S. House of Representatives.  If you live in his district, please contact us so you can help.  Politicians are much more responsive to their own constituents.   His district includes parts of Wayne County and Washtenaw County, and all of Monroe county.  Not sure if you are in his district?  You can go to this link to find your representative: 



If you do not live in his district, perhaps you know of a hematology/oncology family or a family with a rare childhood disease who live in his district and could help.   If you have a doctor who has patients in Dingell’s district, that would help too.  You could ask your doctor if he or she would be willing to help, or we can contact your doctor.   


If you are willing to help, please send your contact information to :  anne@kidsvcancer.org .  Please provide your name, name and age of your child,  hospital your child was treated at, city, phone number, e mail address  and mail address, and Caring Bridge or blog address if you have one.     


 After the Act is pending, we will be back in touch to ask for more help.  Thank you very much for your support. 


Nancy Goodman                                          Anne Sarkinen White

nancygoodman@kidsvcancer.org                   anne@kidsvcancer.org


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