Get Involved

GetInvolvedHeader_edited-2U.S. Capitol Building

This tab is devoted to current and proposed legislative initiatives that will have an impact on the childhood cancer community.  We strongly encourage everyone to write their Representative and/or Senator and voice your opinion on the legislation that affects you and/or our 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 Representative and speak up for the children. You are their voice. Speak loudly. Speak often.

Click on any bill’s name below to get more detailed information.

HR 820: The Childhood Cancer Survivorship, Treatment, Access, and Research Act (STAR) of 2015 –  The Childhood Cancer Survivorship, Treatment, Access, and Research (STAR) Act (formerly HR331) would expand opportunities for childhood cancer research, improve efforts to identify and track childhood cancer incidences, enhance the quality of life for childhood cancer survivors, and ensure publicly accessible expanded access policies that provide hope for patients who have run out of options.

STARbipartisan_edited-1The Star Act was reintroduced for 2017. While it was disappointing that  last year it passed the House but did not pass the Senate in time to be voted on,  it has been reintroduced as HR. 820 and S 292. Actually our efforts last year gained a lot of new support, more than 75% of the House is now cosponsoring the bill. We expect passage should come in the last quarter of 2017. What should you do now? Contact your Representatives and Senators and ask them to cosponsor the STAR Act, HR 820 (House of Representatives) and S 292 (Senate). We have made it easy to contact them. Just click HERE.

Congress should incentivize the repurposing of potentially life-saving approved drugs for rare diseases and pediatric cancers. Similar incentives have been critical in the development of new medicines for underserved patient populations and could lead to hundreds of safe, effective and affordable rare disease treatments within the next five years.

OPEN-2017-Logo@3x-300x142_edited-1The OPEN ACT would establish a six-month marketing exclusivity extension, providing an incentive to a sponsor to repurpose an already approved therapy for a rare disease. The sponsor company would need to demonstrate that the repurposed therapy is safe and effective in treating the rare disease and obtain a rare disease indication from FDA on the drug label. The OPEN ACT is modeled on the highly successful Best Pharmaceuticals for Children Act (2002) that has led to more than 500 labeling changes for pediatric populations.

H.R. 2976 Deferment for Active Cancer Treatment Act  is a commonsense solution that provides adolescents and young adults with a small amount of financial relief while they take time off from work or school typically without pay to receive cancer care, adding to the 11.2% national delinquency rate on student loans.

Once treatment is over, these young Americans can get back on their feet faster; returning to work or school with the expectation of being a contributing member of society. The Deferment for Active Cancer Treatment Act will enable individuals who are diagnosed with cancer to defer payments on public student loans while actively receiving treatment without interest accruing during the deferment period. This bill does not seek to change the terms of the public loan agreement between lender and borrower beyond placing a pause in repayments while cancer treatment is underway.


The Kids First Research Act 2.0 (H.R. 2008) would redirect approximately $300 million in existing, reserved and unused government funds from the Presidential Election KidsFirstSMALL_edited-1Campaign Fund to the Gabriella Miller Kids First Pediatric Research Program. Under the direction of the National Institutes of Health, the funds would be used to develop a comprehensive shared-data resource for scientists researching hundreds of different pediatric cancers and structural birth defects and support the development of computational tools to analyze these large, complex genomic and clinical data sets.

Research to Accelerate Cures and Equity (RACE for Children Act)  The RACE for Children Act passed the House of Representatives by a voice vote on 7/12/2017. It was made part of H.R. 2430 – the FDA Reauthorization Act of 2017. It now moves to the Senate for passage. Senator Marco Rubio will try to get it passed before this August recess.

RACE was reintroduced for 2017. It will reform PREA so that the law meets up with today’s advances in science. RACE for Children will close the loopholes and improve the drug development process for childhood cancer. In 2017, there is a revolution in cancer treatment with new, targeted therapies that are curing certain terminal cancer patients. Today, instead of targeting certain organs, cancer drugs are developed by molecular target, and these molecular targets are present in both adult and pediatric cancers, but kids with cancer are not the first patients to get these drugs. Under today’s system, they are the last to get the drugs. In the last 6 years, 77 drugs were developed for adult cancer and only two were developed childhood cancers.

Author: Joe Baber

19 Responses to Get Involved

  1. Jazmins Journey says:

    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

  2. Lois Kaznica says:

    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.

  3. Denise Townsend says:

    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.

  4. Brian Dworkin says:

    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.

  5. Cameron Clark says:

    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…

  6. Jannette Bruno says:

    We need all the reasearch posible. And offer more help to Kids with not health Insurance. Help help help.

  7. 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.

  8. Alexia Zwiener says:

    The Nation needs more money set a side for Childhood Cancer, our very young are passing over every minute

  9. Mike says:

    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.

  10. Aprjleileen Aguilar says:

    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!

  11. Karen says:

    Lets try and raise more money for children with cancer so many more live karen

  12. Cassey says:

    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.

  13. Beverly Haller says:

    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.

  14. Ginny Catren says:

    There is no reason to not provide funding for our children! Seriously something wrong with this stance! Wake up, and do something!

  15. Rebecca Minnuck says:

    Today’s children need more research for their early cancers. Spend money on children’s research. Give them life!

  16. Katie Hardister says:

    Children deserve up to date HUMANE treatment options. Children deserve more than 4% of federal funding for research/treatment options.

  17. Vesna Husukic says:

    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.

  18. Darlene Glisson says:

    My Granddaughter – Diagnosed with Retinoblastoma July 2015, Chemo, Radiation… Left eye removed, January 2017 (CANCER FREE). Prosthetic Eye, March 12017.
    Facebook – Lizzie: Warrior Princess

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