Taking the Message About Childhood Cancer to Washington – an Update on Margate’s Danny Feltwell
Here is the latest in an occasional series of posts on Danny Feltwell, the 3-year-old Margate boy who is battling childhood cancer. Earlier this year, I became aware of Danny's tough predicament and his father's unending commitment to get the care his son needs despite the many obstacles he is encountering.
Dan Feltwell is a single dad who was forced... to leave his job over a year ago to take full-time care of his sick boy. The father and son spend a portion of each month at a Delaware hospital so Danny can receive a chemotherapy treatment to help him stay alive. Because this treatment was really designed for an adult, no children's version exists, it makes little Danny very sick.
Despite all this, both father and son remain an inspiration to us all. As I told you previously, the University of Delaware football team is going to be adopting Danny during the upcoming season. Now, I understand Danny will also be throwing out the first pitch at an upcoming Phillies game.
Meantime, Dan Feltwell has made himself a lay expert on the topic of childhood cancer and its treatment. He went to Washington, D.C. earlier this month to address a congressional committee on the subject. I wanted to give you the chance to read about this visit in Dan's own words, so I am including his recent letter to me for you to read. The letter is fairly technical, but so is the process. As always, I come away impressed with Dan Feltwell's knowledge, passion and and commitment to fixing a problem - the lack of understanding and treatment for childhood cancers.
Please feel free to add your comments in the section below after reading Dan's letter...
I wanted to tell you that Danny is doing very well, he does have issues with side effects from Chemotherapy but they do not slow him down or interfere with his 3 year old playful nature. On June 20th and 21st Danny and I will return to Nemours AI duPont Hosp. for Children. Danny will receive an IV push of Vincristine and also a Spinal Tap with Intrathecal Methotrexate, both are very strong Chemotherapeutic Drugs. Danny will also start another 5 day Steroid pulse with Prednisolone. As you know The B+ Foundation has pared Danny with The University of Delaware Football Team, which he is now an honorary member (complete with his own Locker in the Locker Room). Danny will start with the Team this July in pre-season.
I will try to make this as short as possible, but explaining what I, and many Childhood Cancer Advocates, tried to accomplish in Washington DC may be longer than I first thought.
The Alliance for Childhood Cancer held what was called Childhood Cancer Action Day June 4th and 5th. This was also the Congressional Pediatric Cancer Caucus, this Caucus was founded in 2009. The Co-Chairs are The Honorable Michael McCaul (R-TX) and The Honorable Chris Van Hollen (D-MD).
What we needed to accomplish, or the goals are as follows;
1. Improve Pediatric Comprehensive Cancer Care and the Quality of Life for Children and Adolescents with Cancer.
2. Support Increased Funding for Childhood Cancer Research through the NIH, the CDC and other Federal Research Agencies.
3. Encourage Collaboration between the Public Sector and Private Research organizations to further
Research on Pediatric Cancer.
4. Promote public policies that address the Health Needs of Pediatric Cancer Survivors.
5. Support the training of skilled of Pediatric Cancer Specialists.
So what this all means is, or our Congressional request was to ask that they;
1. Cosponsor the Childhood Cancer Survivor-ship Act which is an Authorizing Bill, (HR 3015 and S.1613 - these are the Congressional Bill and the Senate Bill numbers).This will provide resources to fund Research and Survivor-ship Programs to improve the quality of life for all Childhood Cancer Survivors.
* Now here is where it may get confusing, the House of Representatives Bill, HR 5651, and the Senate Bill, S. 3187, this is two different versions of the same Bill. The House of Representative (Congressional) version has 3 parts and the Senate version has 2 parts, the first two parts of the house and the Senate are the same, But the Senate has not included the third part, The Creating Hope Act. Rather than introducing them individually they have been rolled into a larger Bill. This Bill is known as the Prescription Drug User Fee Act or PDUFA. This would include;
1. Best Pharmaceuticals for Children Act (BPCA) & Pediatric Research Equity Act (PREA)
These laws provide both incentives (BPCA) and requirements (PREA) for drug testing and development in Pediatric Diseases. Both are up for renewal this year.
2. Drug Shortages- I have written about the Drug Shortage on many occasions, 2 of the Chemotherapeutic Drugs on the shortage list are, Preservative Free Methotrexate which is used for Spinal Taps (Intrathecal) in treating the Central Nervous System and Vincristine. My son will need to receive both of these Compounds throughout the rest of his treatment. The FDA needs the authority for an early warning system.
3. Creating Hope Act or HR 3068 (not included in the Senate version of this Bill) This Bill generates market incentives for drug development through the establishment of a priority review voucher for Pediatric Rare Diseases, including Childhood Cancer. Under this program, a Company or Institution that develops a drug for Pediatric Rare Disease and receives FDA approval also receives a voucher. That voucher comes with Priority FDA Review of any other drug which results in the second drug getting to market many months earlier. This could be, in some cases, in the hundreds of millions of dollars in profits for the developer.
This Voucher could also be sold or transferable for profit. The Creating Hope Act is at NO COST to the tax payers. The House version of this Bill calls for a demonstration project that provides up to 3 Priority Review vouchers, 4 NJ Pharmaceutical Co.`s have signed on for this demonstration project. There has only been 1 new drug for any Pediatric Cancer approved by the FDA in the last 20 years, Adult Cancers have had many new drug approvals.
So here is our problem, This Bill, Prescription Drug User Fee Act (PDUFA) will need to pass both the House and the Senate before the FDA goes on "Lay Off" or break at the end of July. PDUFA has passed the House but not the Senate because of different Language between the two, The Creating Hope Act. This is an election year and this Bill will not move forward if the Senate does not pass it, if the Senate does not include The Creating Hope Act that portion of the Bill (PDUFA) will die.
After researching my sons Disease, Treatment, Chemotherapeutic Drugs and side effects, I have found non of this to be acceptable, so I felt compelled to try and make a difference. 1 out of 5 Children who are diagnosed with Cancer will not survive and two thirds or 3 out of 5 survivors often have debilitating long-term side effects from these Adult Chemotherapeutic Drugs. We can find a better way of Treatment for our Children but Legislation is needed in order to accomplish our goal.
When I started to speak to our Legislators and Legislative Assistants, who are very intelligent and well versed in politics and these Bills, I quickly realized that I needed to become an educator. They knew very little about Childhood Cancer and the Treatments. I also knew that if I did not invoke a feeling with them my words would not be remembered. I told my sons story, his very severe side effects, I explained everything I knew about Childhood Cancer, the Adult Drugs and treatments. I cried a lot of the time but stayed as composed as I could. I showed pictures of my son during his hospitalization and after. I also talked of the Children I have seen pass away and their families, I tried to let them feel just a little bit of what Childhood Cancer is. My hope is that I have educated them enough to make a responsible decision on what they should do for our Children. I shared everything I have, my son, my emotion, other Children and my knowledge, a knowledge that No parent should ever have. I just hope I have made a difference, I would like to think that I have.
Sorry for such a long email but I could not explain this in a short version and have you understand completely.