Liam was diagnosed with leukemia in September 2015, just weeks before his second birthday. Now an energetic three-year-old, Liam is still receiving treatment and says he wants to be an oncologist when he grows up so he can help other kids like him get better.
A childhood cancer diagnosis is always devastating for a family and requires an adjustment to a whole new paradigm. Liam’s dad was only given a few days off of work to be with his family after the diagnosis, and Liam’s mom Katie had to quit her job to meet the demands of a grueling treatment regimen for Liam while also caring for his little brother. Liam’s family is grateful that he’s doing well and responding to treatment, but they’re scared about what changes to the Affordable Care Act could mean for them and for Liam.
“Without some of the protections in the ACA, we fear our lives will crumble. Our middle-class family risks being thrown into a cycle of poverty that we can’t ever climb out of,” Katie wrote recently in a letter to President Trump. “Please fight for these kids and others who rely on some of the vital parts of the ACA. Our families have worked and continue to work paying into a government we trust will step up and care for its sick and poor.”
We’ve heard story after story about families like Liam’s, facing significant financial hardships after a childhood cancer diagnosis and getting by only because of the protections afforded by the ACA. Before 2014, health insurance plans routinely denied coverage to individuals with a pre-existing health conditions. Individuals who were diagnosed with a serious illness often found their coverage rescinded. Infants with acute care needs – like a cancer diagnosis – could find themselves maxed out of their “lifetime” caps for coverage before preschool. Young adult survivors would skip their follow-up exams once they aged out of their parents’ coverage, risking long-term complications and secondary cancers.
We’ve heard that Republicans in Washington are planning to make “repeal and replace” a priority when they return from their February recess, on February 27th. Before heading back to their home districts, Republican leaders released a 19-page policy brief that provided a long-awaited outline of their healthcare reform strategy, which involves an age-based monthly tax credit to off-set the cost of private insurance. Following the release of that policy brief, President Trump tweeted that the “repeal and replacement of ObamaCare is moving fast!”
The Children’s Cause for Cancer Advocacy was founded to ensure the needs and perspectives of children with cancer and survivors are integrated into federal health care, research, and policy. And their voice absolutely must be heard in this - and in every - debate about healthcare reform.
We urge policymakers to protect children and adolescents with cancer and survivors as Congress considers – carefully and comprehensively – these replacement proposals. Combined, the Affordable Care Act, Medicaid and the Children’s Health Insurance Program (CHIP) currently cover over 40 million children and adolescents in our country. Medicaid covers more than a third of childhood cancer patients. Any changes must consider the impact on these vulnerable populations.
Children like Liam who are in need of active treatment and appropriate symptom management, as well as the nearly 500,000 childhood cancer survivors who need ongoing care, could be adversely affected by any significant disruption in the insurance market.
We support access to care for cancer patients across the continuum of their disease without a period of uncertainty in the insurance market that might result in loss of access to affordable insurance coverage and therefore access to care. For this reason, Children’s Cause supports the following elements of health care coverage:
- Access to parents’ insurance coverage: Children and adolescents affected by cancer must continue to have access to their parents’ insurance coverage through age 26 as an option to ensure their continued care and subsequent quality of life and productivity.
- Insurance market reforms: Children and adolescents with cancer must continue to be eligible for pre-existing condition exclusions and exemptions from waiting periods to receive coverage. Insurers should also continue to be prevented from retroactively denying coverage and imposing lifetime and annual coverage limits.
- Access to pediatric providers: Children and adolescents suspected of having cancer must have access and timely referral to pediatric oncology specialists for screening, comprehensive initial evaluation, and diagnostic testing and treatment.
- Children and adolescents with cancer require coverage of coordinated care from a multidisciplinary team of pediatric cancer specialists, including physicians, nurses, social workers, psychologists and other health care providers.
- Early access to diagnosis and treatment is critical to improving survival and long term outcomes for pediatric cancer patients.
- Survivors of childhood and adolescent cancer: Survivors of childhood and adolescent cancer require coverage for long-term follow-up care by specialists with expertise in the late effects of their treatment and disease. As many as two-thirds of childhood cancer survivors are likely to experience at least one late effect of treatment, such as heart damage, bone malformations and secondary cancers.
- Medicaid program: Medicaid is essential to ensuring all children with cancer have coverage and access to care; covering more than a third of childhood cancer diagnoses. We must ensure that the vital services provided under this program to children in need are not compromised.
- Affordable coverage: For those not eligible for Medicaid, support for the purchase of health insurance should be made available to ensure that families can afford coverage for children and adolescents with cancer.