Hello everyone,
I am posting some very important information below from my friend Anne's blog. She has been working with another good friend, Nancy, the founder of Kids v. Cancer on a very important project in the world of pediatric cancer. Both of these friends I met in the cancer world when their sons were fighting cancer. Both had the same kind of cancer as Hannah. Both of their sons are dead. Please give 15 minutes of your time to help.
Please pass along this information in any way you can on your own blogs, by email, through facebook.
Please do it now.
Thank you, Kim
WE NEED YOUR VOICE FOR KIDS FIGHTING CANCER
Do you have 15 minutes, a computer or phone, and a caring heart? Children across the globe need your help. It is a time of unprecedented opportunity. Thanks to technology, we are learning volumes about the genetic and the biological features of cancer cells, but these advances are not translating into better treatments for children. Every day, we bring children to the brink of death, with outdated toxic treatments, in a desperate attempt to save their lives. It has been 27 years since the FDA has approved a new drug specifically for the treatment of a childhood cancer. Most kids treated today are treated with drugs that were developed for adults in the 1950’s, 60’s and 70’s. Due to a lack of funding, we are decades behind in pediatric cancer treatment. You can change cancer treatments for the next generation of children without leaving your home, or spending a penny. We need you to contact two very influential members of Congress, and ask them to be champions for kids fighting cancer. We need to tell them that curing childhood cancer is a national priority.
We are asking Congressman John Dingell (Michigan) and Congressman Henry Waxman (California) to join as sponsors of the Creating Hope Act. The Creating Hope Act encourages the research and development of new treatments for pediatric cancer and other rare childhood diseases. It does not require any taxpayer money (an important fact in these tough economic times). It has bi-partisan support in the House of Representatives and Senate, and the support of pediatric oncologists and researchers from across the country. We are targeting Congressmen Waxman and Dingell because we need a strong Democratic sponsor in the House who is on the Energy and Commerce Committee. We already have Democratic and Republican sponsors in the Senate, and Republican sponsors in the House. The support of Waxman or Dingell is key to getting our legislation passed. The kids fighting cancer do not have a political voice, and are counting on us to stand up for them.
THE PROBLEM
Few people know that cancer is the number one disease killer of our children. Today, over 40,000 kids are fighting cancer. Over 300,000 children are pediatric cancer survivors. However, almost no money is spent to find a cure for childhood cancer. Although survival rates for some childhood cancers have risen over the last 20 years, it is because we are giving growing children higher and higher doses of toxic drugs. Little is known about how these drugs may affect children decades from now. We do know they cause lasting and serious “late effects” for many survivors immediately following treatment. We must provide targeted treatments for the most vulnerable kids in our community, so they can have the quality of life that is deserved after courageously battling cancer.
Today, our outdated treatments fail 20-25% of children. These children are far more than statistics. They lose on average 70 years of life, and leave behind devastated parents, siblings and young friends. These kids are willing to fight, but are given wholly inadequate tools. We must do better. The fundamental problem is that pediatric cancer is rare, and pharmaceutical companies have no economic incentive to spend millions of dollars to research, develop, and test a drug that will be sold to a small number of patients. Simply put, they cannot afford to develop a drug that will not turn a profit. Pharmaceutical companies spend millions of dollars developing drugs for common adult cancers. They make little to no investment in treating pediatric cancers. Our federal government does little to help bridge the treatment gap: approximately 4% of the National Cancer Institutes’ budget is used to research treatments for the twelve different types of pediatric cancer.
A SOLUTION
The Creating Hope Act creates market incentives and will get the best minds focused on developing better treatments for childhood cancer and other rare childhood 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 voucher is estimated to be worth tens to hundreds of millions of dollars) . Finally drug companies will have an incentive to help kids with cancer.
Congressman Waxman is opposed to the Act, on philosophical grounds, because he believes it will give a benefit to pharmaceutical companies, even though he cannot come up with a better alternative. We need him to support the Act, and focus on all the good it will do for deserving kids. Our kids have been waiting decades for better care. We can work together and find innovative ways to advance cancer care for kids.
WE NEED YOUR HELP
Working together, we will change the landscape of pediatric cancer research for the kids fighting today and the kids who will take up the fight tomorrow. You have a very important role in our campaign. We need to flood Congressmen Waxman and Dingell’s offices with calls and e-mails as soon as possible.
We need you to do the following:
A. Congressmen Waxman
1) Call Congressman Waxmans’s Legislative Assistant, Matt Connolly at (202) 225-3976, and tell him you want Congressmen Waxman to be an original lead sponsor of the Creating Hope Act; or
2) E-mail Congressman Waxman’s Legislative Assistant, Matt Connolly at: waxman.staff@mail.house.gov and tell him you want him to be an original lead sponsor of the Creating Hope Act; and
3) Encourage other people to join our campaign, using Facebook, Twitter, Caring Bridge, and Care Pages.
B. Congressmen Dingell
1) Call Congressman Dingell’s Senior Legislative Assistant, Kimberlee Trzeciak, at (202) 225-4071, and tell her you want Congressmen Dingell to be an original lead sponsor of the Creating Hope Act; or
2) E -mail Congressman Dingell’s Senior Legislative Assistant, Kimberlee Trzeciak, at: kimberlee.trzeciak@mail.house.gov and tell her you want him to be an original lead sponsor of the Creating Hope Act; and
3) Encourage other people to join our campaign, using Facebook, Twitter, Caring Bridge, and Care Pages.
Our goal is to flood their offices with e-mails and phone calls right away. Their staff keeps track of the “hot issues” and will let them know this is a pressing issue for many Americans. Regular mail works too, but delivery is delayed for screening (remember Anthrax years ago?) Below are some suggestions for e-mail/ letters and phone calls. If you would like additional facts about childhood cancer, you can get them from Kids v. Cancer’s website: http://www.kidsvcancer.org/facts/
SUGGESTIONS FOR E- MAIL
You can decide if you want your e-mail to be more personal, more factual, or a combination of both. You can make it brief, or tell why you care about fighting pediatric cancer. You decide. Here are some tips:
Paragraph 1: Establish your standing and get their attention. If you live in the congressman’s district, tell them. If you do not, tell them you have standing because the congressman is on the Energy and Commerce Committee, and this issue is a national priority. Since he is on the Committee, he is in a unique position to help kids fighting cancer. Kids around the country are counting on him. Tell them you are speaking for the kids who are fighting cancer in their district now, tell them you are speaking for the bereaved families who are too tired to call, and tell them you are speaking for the kids in their district who will be diagnosed tomorrow or next year.
Paragraph 2: If you want, communicate your personal story- how has pediatric cancer touched your life? If you want, attach a picture of a child you know who has suffered. Did the cancer treatments work? Were they difficult? Is the child suffering lasting side effects from his treatments?
Paragraph 3: Include a specific “Ask”-“Please co-sponsor the Creating Hope Act of 2011. Then give them your e-mail and phone contact information and ask for a reply.
Additional tips: communications from kids usually get special attention. Have the kids you know send letters or pictures. You can give them a fresh insight into the world of childhood cancer.
SUGGESTIONS FOR A PHONE CALL
The fastest approach is a phone call. Call Congressman Dingell’s office and ask for Kimberlee Trzeciak at (202) 225-4071; and call Congressmen Waxman’s office at (202) 225-3976 and ask for Matt Connolly.
1. Give your name, if you are a constituent of theirs, give your address. If you are not a constituent, tell them you have standing to call them because this is an issue of national importance, and the congressman is on the Energy and Commerce Committee. Tell them you are calling for the kids in their district who are too busy fighting cancer now to call, tell them you are calling for the kids who will be diagnosed in their district next week and next year;
2. Get their attention- personalize why you are interested in childhood cancer “My nephew ___ fought cancer for ___ years. These kids deserve better treatment options. We need more pediatric cancer research.” Provide details and facts if you want. It will help.
3. Ask them to become an original co-sponsor of the Creating Hope Act of 2011. If you want, briefly tell your personal story/experience with childhood cancer- let them know why we need better treatments- did your child/neighbor/nephew suffer through our current cancer treatments?
4. Give them your e-mail and phone contact information and ask for a reply.
Together, we can get Congressmen Dingell and Congressmen Waxman on board! In the future, when you hear about advances in treating childhood cancer, you will know you were part of the solution at a very critical time.
Please contact us with any questions and let us know of your success at: anne@kidsvcancer.org.
We are most grateful for your help.
Nancy Goodman and Anne White
This year Hannah dressed as a penguin for Halloween. She was hesitant to wear her costume until she sent her friends a text of the costume and they approved, phew!! She had a good time that night, getting lots of candy and doing a great job of keeping up with everyone, even while yelling over her shoulder at me "MY FEET HURT!!" She was happy, I was happy. I was remembering those days not that long ago when she had to sit and be pulled in the wagon, too tired to get out and walk with her friends!
