CPRIT changing lives of childhood cancer survivors
Imagine being 13 years old and hearing these words: “It’s cancer.”
That was me back in 1984. What followed was a long process of tests, surgeries and treatments, all necessary for me to survive. Those were difficult days. Days that changed the course of my life forever.
When I heard the doctors tell me I was “cured” in September 1989, I truly thought the battle was over. Finally, I wouldn’t need to think about daily trips to medical facilities 90 minutes away, radiation treatments and medical follow-ups.
Little did I know, a new journey was just beginning. And that journey would have an adverse impact on my body for the rest of my life.
You see, as a childhood cancer survivor, there were tremendous obstacles that prevented me from living a “normal” life. There was virtually no way for me to ensure my adult doctors understood the details of my cancer battle. They didn’t know the treatments I had withstood and didn’t have access to the long list of long-term side effects that were possible from all the radiation I endured.
I had to become my own advocate. Despite having no medical training, I had to explain my health history, do my own research and carry around hard copies of all my medical records. I was left to repeat my story to specialist after specialist, hoping I was giving them the details that they needed to keep me on a healthy path. I often thought, “Can’t there be another way to store this data and provide it to my doctors?”
The Cancer Prevention and Research Institute of Texas, or CPRIT, was created by the Texas Legislature and voters back in 2007 to foster breakthroughs in cancer research, treatment and prevention. Each year, the program awards $300 million in grants to Texas institutions through a peer-reviewed competitive basis. One of its earliest grants was awarded to Baylor College of Medicine to tackle the problem that childhood cancer survivors like me were facing.
The Passport for Care is a web-based tool for health care providers to use when they are treating survivors of childhood cancer. The technology allows doctors to extract patient medical records with a few clicks of the mouse. They can see treatment summaries, individualized evidence-based screening guidelines and specific follow-up information. The passport ensures that childhood cancer survivors get the highest level of care, no matter where they live.
Unfortunately, unless the Texas Legislature acts during the 2019 session, CPRIT funding will decline dramatically, bringing to a halt much of the progress that it has made in prevention and treatment. And any interruption in funding may jeopardize the progress that has been made on projects like the Passport for Care.
The Legislature needs to immediately provide $600 million in funding for the next two years to ensure CPRIT can sustain its current level of grant funding. Additionally, the Legislature must pass a bonding authority bill that would allow Texas voters to decide whether CPRIT should receive an additional $3 billion over the next 10 years.
A recent poll commissioned by the American Cancer Society Cancer Action Network indicates that 70 percent of Texans would favor a constitutional amendment that would reauthorize the Legislature to issue $3 billion worth of bonds to fund CPRIT for an additional 10 years. Support reaches across party lines and is strong in every part of our state.
This issue is about more than me and the thousands of childhood cancer patients who are diagnosed and treated every year. There are 15.5 million cancer survivors living today in the U.S., and more than a million of those live in Texas. With continued funding, CPRIT’s Passport for Care program could become an essential tool to ensure all of them receive appropriate long-term care after remission.
In the coming weeks, our elected officials will have the chance to vote on House Joint Resolution 12, which would give Texans the opportunity to vote on whether to authorize $3 billion in bonds to fund CPRIT for another decade. Without this bill, the program will likely sunset in 2021. Please join me in asking your state representatives to support this bill.
Angela Lee of San Antonio is a volunteer with the American Cancer Society Cancer Action Network.