DC - Day Two - Strategy...
Ok, so I'm going to start with the emotional aspect of the two days, in all honesty so that I can get it off my chest and get down to business.
Yesterday was emotionally draining but inspiring all the same. I sat aside a man whose child passed only two months ago - he was 8. I watched a family lift up the shirt of their child and show all his scars on his body as tears ran down the dad's face and told officials - "they told me it's just a matter of time until my son dies, that there are no more options". That child is 4. For two years he has lived in hospitals with his family, that child has stage 4 neuroblastoma. As the table of twenty people told their stories to officials, Michael and I and the father I just spoke about were the only ones with children still alive today. After the day, Michael and I sat on a bench. We didn't talk, we just sat, quiet, heartbroken by the stories we heard. Except they're not stories... they're REAL kids! Lost!!! We as a nation can change this!!!! At dinner last night Michael and I talked strategy - is the one we discussed the right one? Or should we be going another route? We have a Board meeting Friday and lots of information will be up on the site within the next week.
Day two began around 7am. I believe we were back at the hotel around 6pm last night so it was a full day. Michael and I grabbed a salad and sat down for 20 minutes the entire day, which was fine because I was not there to sit down but rather #STEPUP for these kids.
The first meeting was with Senator Bill Nelson's staffer, a very smart young man probably in his mid 20's with no sign of a wedding ring and didn't look or act like he had had any children. With that said, he challenged us to find an office that supported the National Institute of Health (NIH) more than them. He continued that he and his office are mystified at the cutting of funding.
Background and Issue One:
The NIH is given around $30 billion a year by Congress. Of that $30 billion, the National Cancer Institute (NCI) receives the largest piece of the pie - usually a little over $5.1 billion. This fiscal year they said they would give $4.9 billion. Here is the issue - the REAL issue: adult cancer research is funded around 60 percent of their TOTAL research funding from biomedicine. In other words, big pharma - pharmaceutical companies. So when the pie from the NCI gets smaller, adult cancer research is not nearly as affected as kids' cancer who do not have the 60 percent fall back that adult cancers have. Why? Well, pediatric cancer doesn't have 60 percent of it's research from biomedical science companies. In fact, it doesn't even have 1 percent of its total funding from it. Yesterday was not about blaming BIG PHARMA but instead informing government that WE (pediatric cancer) cannot afford a budget cut for we don't have that fallback like adult cancers do. As you all know, of the $4.9 billion given to NCI, ALL pediatric cancers only receive a total of 4 percent of it. Single adult cancers get more than all kids' cancers COMBINED!!!! I also learned that although there are 12 primary kids' cancers, there are in fact over 100 types of kids' cancers. All of those pediatric cancers get 4 percent between them. NIH is trying to cut that!!! So yesterday was about asking them to increase it, not cut it. We asked that they increase to $5.26 billion - that number was come to by 100's of experts! That's the number you at home will be asking for.
Not only are kids dying due to lack of funding - we are losing talent. Why? So you're a top notch graduate and all you want is to be in a lab and research the next cure. You look at what funds are available and you see there is no funding available for pediatric cancer and you choose another field. This is a fact. We have spoken to residents and confirmed this. So brilliant minds are losing interest in kids and the cause - it's a vicious circle. One of the things Cannonball Kids' Cancer has in it's mission statement (publishing it this week) is to encourage new talent into the field. But we need incentives for these brilliant minds.
I am traveling home today and once I am home I will get all the material on the website, including a list of "what you can do to help"...
We were all united yesterday in asking officials to co-sponsor the reauthorization of the Caroline Pryce Walker Conquer Childhood Cancer Act, which would increase the amount of funding available to pediatric cancer research. This is something everyone can get involved with and I will have more information on the site shortly on exactly how to do that.
It seemed yesterday we pulled at heartstrings - two of the officials we met with cried and one said he would pray over our children. That said, if everyone we met with says they will co-sponsor our bill and vote for the $5.26 billion increase in funding then why isn't it happening? Well, one, they could be lying, or two, the issue isn't the politicians but rather the NCI in the way they allocate the money. So Michael and I discussed that perhaps the lobbying should be done there and in Congress. It was suggested in our training to ask the officials to write letters to Harold Varmus who is the head of the NCI. I asked every single person I met yesterday would they write to him and they all said they would - I think it's the accent. ;)
But now I need to follow up with that! I need to make sure it happens! So I will be working on that this week. I will also put on our site the letter I sent and give an example letter so that everyone can send him a letter. I hear he is not a supporter of pediatric cancer and I watched him in an interview lately suggest that kids and adult bodies are similar in that the treatment in adults can be used on kids. Well, would you go to CVS and buy adult Tylenol for your 18 month old? I wouldn't. Yet adult chemo is to be pumped into my son's body? Peter Adamson of CHOP made a great point during our training. He made it clear that kids are not small adults! They simply aren't! And that if we did more research on kids' cancer we could actually find out more about adult cancers as we wouldn't have the environmental effects to consider! A great point I thought. He also stated if we look at the NCI like a business - as investors - that there is no better return on money than in children. Average age of diagnosis of a man with prostate cancer is 70 but a child's average diagnosis is 10. So if we talk about years saved there would be no greater investment! It didn't seem this argument was needed to be made to Congress members - they all agreed kids should be a priority. So if they agree, perhaps NCI is our biggest challenge.
I appreciate that this is a lot of information to digest and truly a lot to process! So I'm thankful for anyone that reads it over and over and over until they get it.
A list of what you can do will be on our site within a week.
Thank you for fighting with us for these kids - OUR kids!!! With budget cuts occurring they need us NOW more than ever!
Written by Mumma-Bear
Cannonball Kids' Cancer
Thankful For The Fight
35 Days Cancer Free