In May, I joined 200+ other advocates to urge Congress to pass the STAR Act - an important piece of legislation that advances research and treatments for children with cancer. We walked the halls of the House of Representatives and Senate, going from office to office, sharing our personal stories and asking for support for the STAR Act. We were kindred spirits with hope. We were fighting all day for kids with cancer.
My Pennsylvania team consisted of an inspiring group of people. A mom who, like me, lost her son to brain cancer and has dedicated her life to curing childhood cancer. Another mom whose twin girls have survived cancer, but are so debilitated by the treatments that they will never have children of their own, have stunted growth and are at high risk of cancer in the future. A 20-year old young man with his brother who is a 'survivor' but does not have fully functioning adrenal glands vital to life. And a mom, who at the time, was facing the real chance of losing one of her twin sons after years of failed and extremely harsh treatments.
On Friday, I learned the STAR Act did not pass the Senate after it had passed the House with enormous bi-partisan support. While I have hope (as always), I was very sad for kids, and crushed that we - parents, adults, scientists and government officials - didn't get this done.
There is no sugar coating this failure. The STAR Act isn't controversial legislation as evidenced by bi-partisan support in the House. How can we fail to pass legislation that helps kids access drugs easier, helps scientists discover cures and gives kids a voice in government?
There is commitment by Congress to bring this to session next year, and I will continue to do my part. But, it's one more year that no progress is made while more children continue to die from cancer.
I know Naya would be deeply hurt, and I personally apologize to all of the children who I let down. I wish I could have done better.
Learn more about the STAR Act here.