Children's Cause Webinar Provides Mid-Year Advocacy Update

 
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Children’s Cause hosted a webinar in late June to provide childhood cancer advocates with a legislative update, now that the 116th Congress has been in session for six months. The webinar covered where things stand with various pieces of legislation that could impact children with cancer and childhood cancer survivors, including research funding, implementation of the STAR Act and ACE Kids Act, progress of the CLINICAL TREATMENT Act, and a survivorship initiative in the works that focuses on transitions of care. On the latter issue, our webinar covered Passport for Care as a model program that has demonstrated success in the area of transitioning from active treatment to long-term survivorship care.

We thank Aimee Ossman of the Children's Hospital Association, ASCO's Tyler Hanson, and Dr. Monica Gramatges of Texas Children's for taking the time to share their expertise and perspectives with our advocates.

You can watch the webinar in its entirety here, and we share a summary of highlights below the recording:

On the Childhood Cancer STAR Act, our CEO George Dahlman provided an update on implementation since its passage last year. A couple of the items being worked on as a result of STAR include an NCI request for application to develop interventions for childhood cancer survivors and a meeting of experts around how best to coordinate existing biospecimen repositiories.

“To get any of the STAR Act finished - or moving along - will require funding. STAR is slated to get $30 million a year but that of course is dependent upon the funding that Congress decides to give to NCI. So the work of the advocates is never really done. We took several years to get the STAR Act [passed] and now we’ll have to advocate every year to get more funding to have it fulfilled,” said George.


On NIH funding, George shared that the House has passed an appropriations bill that provides $41.1 billion for the National Institutes of Health, which is a $2 billion increase. But “the Senate has not yet acted - and may not act, ultimately, which will complicate things for us. But you can take matters into your own hands and help move this along.”

You can use the action alert here to ask your Senators to join their House colleagues by passing an appropriations bill with strong funding for the NIH.


Aimee Ossman provided an overview of the ACE Kids Act, a bill that passed and was signed into law earlier this year. “It was a multi-year effort. As you all know things don’t happen very quickly here in DC,” said Aimee. “The goal [of this legislation] is to improve care for children with medical complexity, including children with cancer, and so we want to make sure we see that actually happen as we work on implementation.”

A high-level look at the components of the ACE Kids Act:

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We also heard from ASCO’s Tyler Hanson, JD, on a piece of legislation that is still working its way through Congress, the CLINICAL TREATMENT Act.

“Basically what this bill will do is that it will ensure patients with Medicaid have their routine care costs associated with clinical trials covered by their insurance,” explained Tyler. “If Medicaid patients aren’t able to access clinical trials because they’re expected to pay for routine care costs out of pocket, then we are keeping 42 million people from accessing the standard of care and quality care for cancer and other serious illnesses. We consider this legislation common-sense and a bipartisan issue.” You can take ask Congress to support this bill with the action alert provided to the right.


Dr. Monica Gramatges, a pediatric oncologist at Texas Children’s, shared about the Passport for Care, an online resource for survivor outreach and education that provides survivors and their families mobile access to their personalized Survivorship Care Plan.

George also previewed a survivorship initiative that Children’s Cause is currently working on: "When the STAR Act was passed, there were a couple of provisions dropped in the interest of compromise and clarity in the final product. One of them was a GAO study on financial issues. We at Children’s Cause and a couple of other groups managed to get that reinstated by Congress asking the GAO individually to do it and that is ongoing. But also what was dropped was a survivorship demonstration project. So we at Children’s Cause have started another initiative that creates a series of childhood cancer demonstration projects in the Medicaid program. …The overall goal is to find out an effective transition model to go from active treatment to survivorship.”

Here's a sneak peek of what we're calling the CAST Model, which could possibly become either a piece of legislation or a project at the Centers for Medicare & Medicaid Services:

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Our next webinar will take place in September - during Childhood Cancer Awareness Month - and will delve deeper into issues of survivorship and transitioning care. To be informed when registration opens for this September 25th event, fill out the form below:

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