DC learning

I can’t believe it but I am so sick right now. I have so much I want to write about from DC and I feel like my brain can’t get it straight.

Overall the trip was a learning experience. I would love to say I feel like we have friends on Capital Hill.. that I feel like they really heard us and were inspired to make a change but I can’t say that.

I can say I met some phenomenal people and learned more about how it works so I feel like we as a community can improve upon our letters/emails to officials.

I will try to explain in my foggy state of mind. ..

NIH (national institute of health) is the big pot of money that all the other medical groups get their money pots from. NCI (national cancer institute) is the one that gives money to childhood cancer. The NCI has only gotten minimal increase so due to inflation since ’03 their buying power has dropped 24%.

Many consequences of that are obvious.. some are not. Because of such a shortage of money researchers will have great ideas.. and write grants but only 1 out of 10 get the funding.. That’s why these Drs. end up spending so much time trying to get private funding..And it means some great minds are going to be turned off from the research portion of pediatric oncology .. we need more ideas and researchers.. not less.

One of the things that hit me so strongly was how cuts to the NCI just slam pediatric cancer versus adult cancer. The largest contributor of money into adult cancer is pharmaceutical companies. They account for 60%.. for kids they account for NOTHING. So our sick kids are already at a big disadvantage.. and so much more dependent on government aka NCI money. 

We have nothing to fall back on.. no safety net.

Kids with cancer have only private funding to fall back on.. while adults with cancer also have big pharma.

Remember that cancer is the #1 death by disease for our nations children. More than AIDS, asthma, diabetes, cystic fibrosis and congenital abnormalities COMBINED!

We need more money into the NCI. Our “ask” as a group on the hill was for a 5.26 billion into the NCI versus the 4.9 billon its set to be for this fiscal year. This isn’t just a pediatric cancer ask its a uniting of all cancers ask.. hoping for more power in numbers.

NCI funds the COG (children’s oncology group) , 90% of kids with cancer are cared for at COG institutions and many enroll in COG sponsored trials.  I spoke with a woman whose son is a survivor.. but she wasn’t really there for him. She was there for her sons best friend who passed away in Sept. 2 weeks after the closing of a clinical trial he was enrolled in.

We got a lot of well “we just think its not enough money”.. blah blah blah.. Yes I agree.. its not. But a slight increase is better than the decrease.  And a ton of ..” well its THEIR fault not mine/ours. ” The kind of answer I don’t allow from my 4 yr old..

Sorry got a bit off topic.. then who decides that kids and their 12 different kinds of cancer are only deserving of less than 4% of the NCI pie..some very smart minds.. none of which are pediatric oncologists. There is NOBODY serving that represents our kids. *The president makes these appointments so when there is another opening we now know who we need to put the pressure on!*

My take away from this portion is we need to keep the heat on our representatives but who we ask and what we ask needs to change up a bit.. Plan to have that info on our site in a week…(going to tap into a few people that wrote to our email address to say they can help with research!!)

Next up was the Carolyn Walker Pryce re-authorization. First signed into law in ’08. What personally stands out for me in this act is the biospecimen portion of it. Encouraging tumor donations.. through living patients and dead ones. Donating Jennifer’s tumor, as I wrote about previously, is something I am so thankful we did. This act will allow more patients and parents this option. So much can be learned from these biospecimens. As well as a supposed 30 million in appropriations.. but that I will believe when I see it.

This is the business portion of our trip.. Which I felt like I needed to get out of my head. Gilroy Family Photographer | JLK Glitter Shoot-39

 

 

 

18 Responses to “DC learning”

  1. Wow. I feel so much more informied and it is empowering. I am sure running into all the politics was frustrating and maybe even disheartening at times but I am blown away by what you learned and did. Amazing. I wonder if there is any way to find out about pediatric oncologists who would be interested in serving in Washington. A close family friend of ours served in the cabinet and the “Washington politics” of it all got to him. It takes balls to go there and do what you did!!

  2. i bet it’s incredible seeing all that people do and don’t do. i can’t imagine the frustration but also that everyone who starts on the journey like you are have to go thru the learning process first. takes so long. too long. thank you for starting out and including us in the learning journey. hang in.

  3. There are a couple of pharma companies focusing on pediatric cancer research. I want to say in the Bay Area, even. I can look their names up for you, if you’d like.
    The money going toward adult cancer vs pediatric is staggering on the pharma side. I can’t make excuses for it, but a friend that works in the industry gave me some info around it and why. Didn’t make me feel better, but it was an explanation at least. I have lost 2 grandparents to (adult) cancer, and am on the way to lose a 3rd. My mom was also treated for cancer. Still, while I’m glad there are studies dedicated to adult cancer, it disturbs me greatly the money for pediatric is so little.

  4. Wow your amazing Libby and Tony so much info that we just didn’t know about, thank you for including us and educating us. Glad your back safe. Always Love4JLK

  5. Thankyou Libby and Tony. I have learned so much more. We all have. My love to every single one of you. ♡

  6. Way to go, Libby! I hung on to every bit of info you provided. Keep it coming. Wow, I held my breath through your blog…we’re you typing as fast as I was reading?

  7. Wow. Reading this just makes me so mad about what this is doing to our kids. I feel like I need to do something but I feel so helpless at the same time. Like I am not doing enough.
    You are paving the way Libby. xoxoxo

  8. So proud of you for navigating this the way you are and for laying out a clear direction. I’m thrilled to watch this unfold and hopefully be a part of your glitter squad making a difference.

  9. Wow, that is a lot. I can’t believe the odds against pediatric oncology…it’s just disgusting. You’re so awesome Libby! I truly hope and believe someone on Capital Hill heard the call and will make the changes needed. Lots of love to you!

  10. How incredibly frustrating!!! I don’t know how you held it together and didn’t scream from the top of your lungs!!! I got angrier readying this. I cant believe that Pharms are the biggest contributors to adult cancer when we all know they make a killing financially on vaccines alone! I cant wait to see how I can help! Go get them Libby!

  11. You are so amazing libby. you are spilling out the ugly truth. Broadcasting their incompetence to govern by appropriating proper funding towards our future. It’s something they have chosen to over look. It’s a cup of hot coffee to their faces when they need to wake up and prioritize and now allow this to continue to happen. I am behind you libby. Wish I could walk it with you. I do post cancer awareness and wrote to our Governors and I donate funding all because of you. You are making a huge impact and a difference. I thank you.

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