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.

GOOD NEWS!

GOOD NEWS: The Childhood Cancer STAR Act has been fully funded! The DoD CDMRP for children, adolescents, and young adults cancers was also budgeted for 2019! The student loan payments deferment while receiving cancer treatment bill IS now a law! THANK YOU! You and your calls, emails, letters, and tweets made this happen! We are stronger when we collaborate and we are mighty when we speak with one voice! THANK YOU!  9/15/2018

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

STARPASSED 9-29_edited-1

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.

StudentLoan9-29_edited-1

 

ChiPACC Act Provides Better Medicaid Coverage to Children in Need.  HR. 6560MedicareCoverSML_edited-1amends title XIX of the Social Security Act to provide States an option to cover a children’s program of all-inclusive coordinated care (ChiPACC) under the Medicaid program. It requires that the families of all children who qualify for Medicaid receive a specialized care plan covering a range of services – palliative, counseling, respite, expressive therapy and bereavement. This will provide the children and their families greater comfort and peace of mind. The bill allows states to create comprehensive care programs for the children.

H.R. 1676 / S. 693: Palliative Care and Hospice Education and Training Act

PalliativeCareWhatisit_edited-1The Palliative Care and Hospice Education and Training Act (PCHETA) aims to establish Palliative Care and Hospice Education Centers, provide physician and nurse training in palliative medicine. It provides Palliative Medicine and Hospice Academic and Career Incentive Awards to individuals to support career development, develop a national education and awareness campaign, and to expand national palliative care research programs. The Act was passed by the House on July 23 and the Senate version (S.693) is currently before the Senate HELP committee.

H. Res. 69  Designates May 17th of every year as National DIPG Day

Expressing support for designation of the 17th day in May as “DIPG Awareness Day” to raise awareness and encourage the research into cures for diffuse intrinsic pontine glioma (DIPG) and pediatric cancers in general. Diffuse intrinsic pontine glioma (DIPG) affects 200 to 400 children in the United States each year with certain regularity;

What may be happening the future. The following bills are in development stages:

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.

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.
    https://4sqclobberscancer.com/on-capital-hill/

    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

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google+ photo

You are commenting using your Google+ account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s