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

 



Dear PAC2 Pennsylvania 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 looking specifically for families from Pennsylvania.  One of the original co-sponsors of the legislation, Senator Robert Casey, is eager to conduct press conferences regarding the act, with pediatric hematology/ oncology families, and angel families in attendance.  It is a great opportunity for us to raise awareness about pediatric cancer.

 

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, city, phone number, e mail address and mail address, and Caring Bridge or blog address if you have one.  

 

Once we have a number of names from families located throughout the state, we will pass along your contact information to Senator Casey’s staff.  If he is going to be in your area, they may contact you and ask you to come.  We are not sure when or if they will contact you, but you can always decline if it does not fit in your schedule.   They may contact you soon, or it may not be for several months.  We hope this legislation will pass quickly, but it may take 18 months or more.   If you are contacted, and want more information about the act or pediatric cancer, we will be happy to provide it to you. 

 

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

nancy@kidsvcancer.org                             anne@kidsvcancer.org

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