The STAR Act

In case you are looking for a positive way to influence your congressional leaders this election season, please keep reading.

The STAR act, a bill outlining support and funding for people affected by childhood cancer, is in committee in Congress right now.

Here's how the language of the bill begins:

"Approximately 1 in 285 children in the United States will be diagnosed with cancer before their 20th birthday.
 

In 1960, only 4 percent of children with cancer survived more than 5 years, but today, cure rates have increased to over 80 percent for children and adolescents under age 20.

By 2020, the population of childhood cancers survivors is expected to be 500,000 individuals.

As many as two-thirds of childhood cancer survivors are likely to experience at least one late effect of treatment, with as many as one-fourth experiencing a late effect that is serious or life-threatening.

As a result of disparities in the delivery of cancer care, minority, low-income, and other medically underserved children are more likely to be diagnosed with late stage disease, experience poorer treatment outcomes, have shorter survival time with less quality of life, and experience a substantially greater likelihood of cancer death."

These are only a few of the 15 findings listed in the beginning section of the STAR act, currently "on hold" in Congress.

Many families impacted by childhood cancer could recite these facts and more from memory (such as childhood cancer research receives less than 1% of government funding from the NCI and less than 4% from the NIH). These families could also give personal stories from the heart that go beyond the facts and figures.  Leaders in the children's oncology community across the board have given their input and ultimately their support for the STAR act.

S stands for Survivorship.  Those half-million survivors are going to need systematic follow-up care throughout their lifetime.

T stands for Treatment.  Although many of the "common" childhood cancers have high cure rates, many more do not, especially if the cancer is rare.

A stands for Access.  We were lucky with how quickly and easily Anna received intense medical treatments.  Many kids are not so lucky.

R stands for Research.  "Virtually all progress against cancer—in both children and adults—has been founded in basic research, often in areas not directly related to the disease ... Pharmaceutical companies have been reluctant to develop drugs appropriate for children with cancer because it requires making an investment in products that are unlikely to cover the high costs associated with their research, development, marketing, and distribution." (Again, from the first section of the STAR act.)

All of the leading children's oncology groups are backing this bill.  It has received plenty of bipartisan support.  You can even access the exact language of the bill using the above link.  It's pretty wordy, but it includes such ideas as including a pediatric oncologist on national oncology committees.  Sounds like a good cause, right?

But ... it was introduced 15 months ago.  And it's stalled again in the House Energy and Commerce Committee.  Because, in an election year, it's not a priority.

YOU can help make it a priority.

Start by checking out this map.

1. A gold star means, you should say “Thank You!”  Your Rep is already a co-sponsor.  (Dane County folks ... Mark Pocan is already a co-sponsor.)
2. A black telephone means you should reach out (call, email, and tweet) and invite your Rep to sign on.
3. A red telephone means your Rep is on the E&C Committee and hasn’t yet signed on.  These are important targets!

If you want to send a form letter through the mail, you can visit this site.

If you'd rather send an email, you can visit this site.  You simply put in your zip code and, viola, the email is already drafted and ready to send to your representative.

If you choose this route, remember to cross check whether or not your rep is already a sponsor.  If they are, you should probably change the language to say "Thank you for your co-sponsorship of the Childhood Cancer STAR Act" :)

Feel free to include the following paragraphs in the section that looks like this: "[[[[[Please include your story of why you have gotten involved in childhood cancer and why it matters to you that they co-sponsor this bill.]]]]]"

"A young girl who I know was diagnosed with high-risk metastatic medulloblastoma when she was 6 1/2.  She underwent brain surgery, six weeks of total head and spine radiation, and 6 cycles of high-dose chemotherapy.  At almost two years out of treatment, her cancer is considered in remission.

By some data measuring tools, she is considered one of the lucky ones.  Although she was diagnosed late in the game, her cancer was considered fairly common and she had easy access to receive excellent medical treatments.

However, she will continue to experience multiple late-effects, both physical and cognitive, due to her treatments.  Her childhood was taken from her at a very young age.  Through the passage of the STAR Act, her opportunities in the future will look better and brighter because of the research and follow-up care included in the bill.

No child should ever experience any type of cancer.  But, for those that do, they should not be asked to fight this battle alone."

Thanks for whatever help you are willing to give!