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Promoting Access to Care for Young Survivors

Children with cancer deserve access to the very best care. But finding quality care can be complex—and costly. These challenges extend far beyond treatment, following childhood cancer patients into adulthood. In fact, by the age of 50, more than 99% of childhood cancer survivors have experienced a severe or life-threatening condition from the toxic treatment that saved their life.

The patient impact

Childhood cancers often require immediate and aggressive treatment, which are expensive and can include travel—both of which are out of reach for many patients and their families.

Several barriers prevent kids from getting the best care. Some include:

  • Clinical trials are often the best treatment options for kids—but not all children with cancer have access to them. The 20 million children who rely on Medicaid lack access to coverage for clinical trial expenses
  • Kids covered by Medicaid who need care from out-of-state providers or whose closest health center is across state lines often encounter paperwork delays that can delay start of treatment for critically ill kids, leading to worse outcomes
  • Insurance companies don’t cover everything involved in care. Oftentimes, pediatric cancer specialists and hospital visits are out-of-network
  • Insurance companies often fail cover fertility preservation techniques or procedures that would improve a patient’s quality of life as an adult

But access to care for children with cancer doesn’t end with treatment. Even after active treatment ends, survivors of childhood cancer often experience complex physical and mental health needs for years. They may:

  • Require high-quality insurance to cover necessary follow-up care
  • Face higher insurance premiums for some types of insurance, since their cancer diagnosis is a permanent pre-existing condition
  • Face significant penalties for missing student loan payments while in treatment

The solution

To protect access to care for children with cancer—both before and after treatment—we support policies that:

  • Strengthen Medicaid and the Children’s Health Insurance Program, which together provide affordable health coverage to more than half of U.S. children
  • Require Medicaid to cover care associated with clinical trials
  • Strengthen protections that allow pediatric patients to see specialists not included in their insurers’ provider network, when needed and without additional cost-sharing
  • Ensure coverage for fertility preservation services for childhood cancer patients whose treatment may affect their reproductive systems
  • Invest in further research about childhood cancer survivors
  • Codify protections for patients with pre-existing conditions and defend state and federal protections that ensure childhood cancer survivors do not face higher premiums or prohibitive out-of-pocket costs due to their cancer history or complex care needs