This tab is devoted to current proposed legislative initiatives that will have an impact on the childhood cancer community. Click on any of the legislative bills below that interest you to get all the information you need. Take action by contacting your legislators and speak up for the children. We strongly encourage everyone to write their Representative and/or Senators and voice your opinion on the legislation that affects you and/or our childhood cancer community. You are their voice. Speak loudly. Speak often.
The Childhood Cancer STAR Act has been fully funded for 2023. The NCI Childhood Cancer Data Initiative was funded for $50 million. The DoD CDMRP for children, adolescents, and young adults cancers was also budgeted for 2023! THANK YOU! You and your calls, emails, visits, letters, and tweets made this happen! We are stronger when we collaborate and we are mighty when we speak with one voice! THANK YOU!
Passed in both the House & Senate!
Childhood Cancer STAR Reauthorization Act
Signed into Law January 5, 2023: STAR Act – the most comprehensive childhood cancer bill in history will end in 2023. This legislation will allow all the programs from the Act to continue for five more years. The original STAR Act was signed into law in 2018 and authorized five years of funding at $30 million annually through 2023. This legislation expands opportunities for childhood cancer research, improves efforts to identify and track childhood cancer incidences, and enhances the quality of life for childhood cancer survivors. The House version, HR 7630, has over 105 cosponsors and the Senate companion bill, S 4120, has more than 35 cosponsors. Many more are needed, it must pass in the House and Senate.
Legislation below DID NOT pass
The Gabriella Miller Kids First Act 2.0 Failed to Pass in Senate
The original act is a 10-year program that will end October 2023. The Gabriella Miller Kids First Research Act 2.0 would have reauthorized Kids First at $125 million for a five year period to expand research and a truly comprehensive SHARED-DATA resource for scientists researching the majority of pediatric cancers and rare disease.
S. 4215 Give Kids a Chance Act Failed to Pass in Senate
The Give Kids A Chance Act, introduced by Congrssmen McCaul and G.K. Butterfield in the House, and was accepted and passed as an amendment into HR 7667 Food and Drug Amendments 2022. Now we turn our attention to the Senate. Senator Marco Rubio (FL) and and Senator Michael Bennet (CO) introduced the the bill as S. 4215. When passed, it will pave the way for cutting-edge research and child-focused cancer treatments by authorizing the FDA to require pediatric cancer trials study not just one drug, but a combination of drugs so these drugs together can beat relapsed cancers. Studying combination drugs will improve outcomes for children and families across the country. Currently, almost all pediatric cancer trials are conducted on kids with relapsed cancer. FDA is only authorized to require pediatric cancer trials of one drug. Unfortunately, children with relapsed cancer are rarely cured by one-drug treatments because their cancers are so advanced. Senate Bill S.4215 Give Kids a Chance Act authorizes the FDA to require pediatric cancer trials study not just 1 drug, but a combination of drugs so that these drugs together can beat relapsed cancers.
H. Res. 404 Designates May 17th as “DIPG Awareness Day” Failed to Pass in House
A House Resolution that expresses support for the designation of DIPG Awareness Day. DIPG is diffuse intrinsic pontine glioma, a terminal childhood brain cancer. This resolution raises awareness for DIPG and pediatric brain cancer, the most prevalent and deadliest form of childhood cancer, and the need for greater federal funding support for research into cures for children with cancer.
Accelerating Kids’ Access to Care Act
This bipartisan, bicameral ( HR 3089 / S. 1544) legislation led by Congresswomen Katherine Clark (D-MA) and Jaime Herrera Beutler (R-WA) and Senators Michael Bennet (D-CO) and Charles Grassley (R-IA) was recently introduced and will speed up care for many children with cancer by removing duplicative screening processes. It will help ensure children on Medicaid or the Children’s Health Insurance Program (CHIP) who require care from providers located outside of their home states will not face unnecessary delays in accessing such time-sensitive and essential care. Children’s Hospital Association has provided a detailed explanation of the benefits of this legislation and talking points.
HR 3321 / S.1670 Credit for Caring Act of 2021
Originally designed for families caring for an aging senior, it is backed by the AARP and the Home Care Association of America, BUT this legislation will work for those that are caregivers for children disabled by cancer. Please support this bill that allows an eligible caregiver a tax credit of up to $5,000 for 30% of the cost of long-term care expenses that exceed $2,000 in a taxable year. The bill defines eligible caregiver as an individual who has earned income for the taxable year in excess of $7,500 and pays or incurs expenses for providing care to a spouse or other dependent relative with long-term care needs. Family caregivers incur significant expenses while supporting their loved ones -$7000 per year on average. This bill will provide these caregivers, with financial relief to help offset some of the expenses they incur.
HR 5377 The Cancer Patient Equity Act
“The Cancer Patient Equity Act, introduced by Congressment G.K. Butterfield and Gus Bilirakis, will give patients access to cutting-edge, next-generation molecular diagnostic tests that can help identify an individual’s specific type of cancer and can inform treatment protocols. Determining whether a patient’s cancer is rare or whether it has traits that make it more or less responsive to available treatments can be a game-changer for patients. Too often patients do not have access to these tests unless their cancer reoccurs, at which point it may be too late. This bill will help ensure that patients and their physicians are empowered with actionable information from the beginning of their treatment. Medicare, Medicaid, and CHIP already reimburse molecular diagnostics for recurrent and metastatic cancers, and this Act extends that coverage to ALL new cancer patients at the time of diagnosis.
HR. 3773 / S. 1357 Pediatric Researchers Grant Award Progam
Senator Joni Ernst R-IA, on April 22, 2021 S. 1357 introduced a bill The PACT Act of 2021 to amend the Public Health Service Act to authorize the Director of the National Institutes of Health to make awards to outstanding scientists, including physician-scientists, to support researchers focusing on pediatric research, including basic, clinical, translational, or pediatric pharmacological research, and for other purposes. Congressman John Joyce, Representative for Pennsylvania’s 13th congressional district, sponsored HR 3773, PACT Act of 2021, a matching bill in the House or Representatives onJun 8, 2021.
The below items are ongoing each year
Sign a National Petition to Make Childhood Cancer a National Priority
The petition urges President Biden to include a comprehensive strategy to end pediatric cancer as part of his national plan to, in his words, “end cancer as we know it”; 2) requests that President Biden include in his plan an initiative for the U.S. government to partner with the pharmaceutical industry to incentivize and require more aggressive development of pediatric cancer drugs; and 3) urges Congress to increase overall government research funding for pediatric cancer and pass the bipartisan Gabriella Miller Kids First Research Act 2.0.
DoD, Peer Reviewed Cancer Research Program – Annual Appropriations Required
Each year, the Department of Defense appropriates funding for research for specifically for Cancers in Children, Adolescents and Young Adults within the DOD Congressionally Directed Medical Research Program. Each year 85,000 children, adolescents and young adults are diagnosed with cancer which is the #1 disease killer of this population. 86% of U.S. ACTIVE military are 39 years or younger. The funding is to be used to research for rare, unmet medical needs that affect military personnel and their families. A summary of funding is provided for years 2017 through 2020.
Is your Representative a Member of the Childhood Cancer Caucus?
Congress has a 66 member Congressioanal Caucus to address Childhood Cancer Issues. The mission is: The bipartisan Childhood Cancer Caucus is to serve as a clearinghouse for information on pediatric cancer and a forum to aid Members of Congress in working together to address pediatric cancer. The Caucus hosted a Summit in September.2022. The mission of the Caucus is to strive to raise awareness about pediatric cancer, advocate in support of measures to prevent the pain, suffering and long-term effects of childhood cancers, and work toward the goal of eliminating cancer as a threat to all children. If your member of Congress is not a member, please ask them to join. The more members we have improves our voice in Congress: CLICK HERE
The Creating Hope Act needs to become a permanent Act in the future.
The House and Senate passed a four year reauthorization and this bill on 12/22/20. Thanks to the hard work and relentless effort of childhood cancer and rare pediatric dieases advocates all across America. Thank You! This Act has produced 30 drugs for pediatrics diseases and four of the six cancer drugs we have today that were developed for children only. We need to make this ACT permanent. It is the best tool we have to encourage developers to produce better, non-toxic, cancer drugs for children. Whenever you see or speak to a legislator, it’s a good idea to let them know how much you appreciate their support on this in the past, but we need to make this valuable tool permanent.
Think about it for just a moment …. Imagine if 1900 people were killed this week in a landslide, train wreck or explosion. What do you think the lead story would be on the media?
Now, contrast that with 1900 children dying from cancer EVERY WEEK and that’s called “rare.” It’s time we all get involved to change this.
Thank You #TNCI
Please devote more time and money to help cure these horrific childhood cancers. It is shameful that there is not more research for these children.
My granddaughter Riley was diagnosed with AT/RT brain cancer when she was just 16 months. Please continue to fund research for Childhood Cancer, the current treatment, when effective causes life long difficulties, these babies deserve the opportunity to live a good quality life. 46 kids are diagnosed with cancer everyday, 7 of them will die, just take a moment and imagine the horror of two classrooms being destroyed every day and 7 children not going home to their parents, this is our reality.
My 18 year old nephew passed away this past July from Ewing Sarcoma. Enough is enough. No more families should have to go through what my sisters family has gone through.
Well that’s a out right lie cause my child that is only 1and 1/2 year old has cancer.. so FDA please lie some more. Lie about drug prices being marked up or the fact the FDA is responsible for suppressing knowledge and any information about meds. that can cure cancer cause the pharmaceutical industry wouldn’t make money…
We need all the reasearch posible. And offer more help to Kids with not health Insurance. Help help help.
My grandson who is now 27 months old, was diagnosed with Retinoblastoma in May 2015. At his age, he has no idea what is going on. He only knows he and his mommy take a long trip that isn’t any fun. It revolves around being poked, prodded, laying flat on his back for 6-8 hours when they administer chemo.. a baby should not be going through these things. There is no reason our children/grandchildren should be getting cancer, but there is even LESS reason why there is not more research and funding to find cures and medications to actually cure them.
The Nation needs more money set a side for Childhood Cancer, our very young are passing over every minute
Quit destroying our very young by poisoning them with chemo and burning them with atomic bombs. Work to find a cure and quit padding the pockets of Pharma giants. We are a super power. Prove it.
These children need us to fight for them. They deserve more options for treatment. How can we look at our children and know that we haven’t done more for them. Please, please. please help our children fighting cancer survive!
Lets try and raise more money for children with cancer so many more live karen
Its absolute bullshit that childrens cancer doesnt get more research and new drugs because it isnt pretty and no one wants to talk about it and big pharma doesnt see a lot of money in it. That is just disgusting. Children deserve our very best of everything. ESPECIALLY when it comes to healthcare! America projects itself as the best in so many ways but childrens healthcare and cancer treatments are seriously lacking. Start f**king leading and save these poor babies. Unbelievable that this is even an issue in twenty first century america. Shame on everyone.
This is a very important problem plaguing our world right now. I myself am a survivor of childhood cancer. Unfortunately some are not so lucky do to the lack of funding for research for childhood cancers. I live in a fairly small community and within the last year there has been more than 10 children in the area diagnosed with all different typesnof chilhood cancer. One of these children is my nephew who was diagnosed at only 22 months with a very rare form of brain cancer. There are children with different types of leukemia, sarcomas, lymphomas, and other types of brain cancers. My nephew is doing well..we are very lucky to live where we do to have a wonderful hospital near to us. The wonderful people at the University of Iowa Children’s Hospital take very good care of the kids and their families. However some patients are not lucky enough to have such a wonderful hospital in their area. I know that there are many costs for parents and families of children with childhood cancers first hand. These families and patients already have enough to worry about without having to wonder if there are even medications out there for their child to have access to. No child should have to ask “Mommy, am I gonna die?”. Childhood cancer research funding could greatly increase the chances of survival for thousands of kids every day.
There is no reason to not provide funding for our children! Seriously something wrong with this stance! Wake up, and do something!
Today’s children need more research for their early cancers. Spend money on children’s research. Give them life!
Children deserve up to date HUMANE treatment options. Children deserve more than 4% of federal funding for research/treatment options.
I am a mother who lost son in 2010 to a “Rare osteosarcoma cancer.
Think about all mothers crying every day and missing there children and think about children we loosing every day.
They are our future. What kind a future we are going to have. Find a cure. That is priority to save our future. Have families together.
While you working on finding a cure think about your children. It can happened to anyone.
My Granddaughter – Diagnosed with Retinoblastoma July 2015, Chemo, Radiation… Left eye removed, January 2017 (CANCER FREE). Prosthetic Eye, March 12017.
Facebook – Lizzie: Warrior Princess
Glad to hear she is cancer free today. We will continue to wish for her good health. Keep us posted.
Kids fighting cancer & their families need our help. We need to be their voices. 4% isn’t enough! Childhood cancer research needs more better & proper funding from the government! More kids die of cancer than adults due to improper funding! Let’s make simple donations & help fight childhood cancer!🎗🎗🎗
iffuse intrinsic pontine gliomas (DIPG) are highly aggressive and difficult to treat brain tumors found at the base of the brain. They are glial tumors, meaning they arise from the brain’s glial tissue — tissue made up of cells that help support and protect the brain’s neurons.
My daughter leondra Ellis she is 11 yrs old she has this dipg brain cancer I made her awareness page leondra world on FB we need more research to help us fight this nobody talks about this it’s very hard seeing your child goes from being so happy to being hurt sad in depressed please help me get my daughter story out help us find the help me need
My son is a lucky one that fought and survived resistant Hodgkin’s lymphoma. What the treatments did to him- it’s heartbreaking. Stealing what he loved early in his life. Stealing his innocence. Taking his childhood away. This shouldn’t happen. Let’s fund childhood cancer!
Please help the children?
Time to show the world our children matter just as much or more as they are the future of the world. Childhood cancer will no longer survive and take our kids .
Our son Oscar Hasham died of DMG at age 10. We need more federal funding to find a cure as no child deserves to hear there is no cure, make memories.
I lost my brother to cancer when we were young, i am very passionate about kids with cancer and in 2016, I visited a local hospital in Nairobi, Kenya and the number of kids with cancer not getting the best treatment is sickening. After that I wrote a small piece about it, time passed didn’t get a way to help so I focused on other things. Recently people have been calling me asking if I could help them help children with cancer any ideas please?