Teen cancer patients need better treatment, support

While her soccer team was lining up for practice, my 13-year-old daughter was meeting her oncology team.

For more than two years, I observed my daughter and other teen patients struggling with their toxic treatments more than younger patients. My search for teen cancer patient and caregiver resources was fruitless.

Adolescent and young adult cancer patients are treated with older adults or young children, and there is little research addressing this age groups specific needs with treatment and the life-long effects of treatment, known as survivorship issues. Survivorship issues include permanent damage to vital organs, bones and nerves. Other issues include cognitive effects, secondary cancers, or chronic life-threatening illnesses.

My daughter’s treatment resulted in the need for bilateral hip replacements, but she persevered and is in remission.

The federal Childhood Cancer STAR Act offers hope for less toxic treatment resulting in higher survival rates and a higher quality of life during and after treatment. Thanks to the support of Sens. Lindsey Graham and Tim Scott and South Carolina’s U.S. House members, the bill unanimously passed the Congress and was signed by President Trump on June 5.

Previous treatment efforts were focused on achieving and maintaining remission. With improved survival rates, many pediatric cancer survivors now experience long-term treatment effects and live longer than adult cancer survivors. The STAR Act is important to me because there are provisions for follow-up and care of survivors such as my daughter.

It is important to be aware of the work that is being done by organizations and advocates across the country to improve the outcomes for cancer kids and to make our lawmakers aware of the plight of these young ones facing life-threatening and life-changing cancer battles. We can change the fact that childhood cancer is the leading cause of death by disease for children in this country.

Please contact your congressional representatives and ask them to fully fund appropriations for the STAR Act so that my daughter and the several hundred other South Carolina children facing pediatric cancer each year will have the hope of better treatments and quality of life.

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