Childhood Cancer ‘Action Days‘ in DC this year has several pieces of legislation that are being advocated for by Elevate advocate Natalie Steuer of Iowa! Elevate is thrilled to be able to have this feisty and fed up mom to, Sage, a Stage 4 Fusion Positive Rhabdomyosarcoma Survivor meet up with additional Elevate Rhabdo Workgroup members for this 2-day federal advocacy opportunity and lend their powerful voices to the cause!

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“Advocating for our kids is something I don’t even have to think about. Being able to be present in that moment and know I made a different towards a positive future is unmeasurable.”

–Natalie

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Here are the legislative pieces for 2024 before Congress:

-$30 million to fully fund the Childhood Cancer STAR Act [Link HERE]

-$50 million to fully fund the Childhood Cancer Data Initiative [Link HERE]

Federal funding for childhood cancer programs are necessary to continue the important work and these two programs are being asked to be fully funded. The STAR Act is a fully approved piece of legislation through the year 2028, allocating the funds to pay for it must be approved EVERY year. 

Also up this year is the:

-Co-Sponsor Accelerating Kids’ Access to Care Act (H.R. 4758/S.2372) [Link HERE]

   This act reduces regulatory burdens to allow children with complex medical needs greater access to out-of-state providers who can best meet their needs.

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-Co-Sponsor the Pediatric Drug Supply Act (H.R. 6963) [Link HERE]

   This Act creates a pilot program to maintain a 6 month reserve of childhood cancer chemotherapy drugs.

   This particular legislation is important because, just this fall, drugs that are used in leukemia and lymphoma treatment, blood cancers that affect more children than any other type of cancer, have been in short supply, forcing oncologists to make difficult choices on altering life saving treatment regimes.

   In 2022, McBride et al. surveyed pharmacists working in children’s hospitals across the United States and found that 63% of institutions reported one or more drug shortages PER MONTH, and these shortages resulted in treatment delays, reduced doses and the need to pursue alternative regimens among 75% of the survey respondents! McBride et al. (2022) went on to say that ”drug shortages are a clear and growing challenge.” 

More information HERE.

   These shortages, which often lead to delays, have complicated an already complex research environment, and “increased the risk of medication errors and adverse outcomes.” 

   Within recent years, Vincristine, also one of the most common drugs for treating all types of childhood cancers, was also in short supply, forcing some pediatric patients to have to delay treatment, which is putting them at risk for less favorable outcomes altogether. 

With such a short list of available chemotherapies for children at all, how can we risk not having a supply of them? 

 This is why we need educated advocates sharing how this directly affects those diagnosed with childhood cancer and in the fight of their lives, they are counting on these bills to be passed and legislation to fund them.

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   Elevate is looking forward to sharing more from Natalie’s time in DC, alongside so many childhood cancer advocates that know this vital work requires all the effort!

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  “Advocating for our kids is something I don’t even have to think about. Being able to be present in that moment and know I made a different towards a positive future is unmeasurable. It’s for Sage, and always Sage, but he’s not the only kid with cancer. I do it for the ones who never could use their voice. I do it for the parents who are tired, the families who are hanging on by the thinnest thread, because I was there too. Be a part of good, be a part of change and use your voice even if it shakes.”

      -Natalie Steuer, Sages Mom- a Stage 4 Fusion Positive Rhabdomyosarcoma Survivor