How children with lethal cancers and other incurable illnesses have benefited from the Affordable Care Act '“ and why they'll suffer if the Supreme Court overturns it

(The Conversation is an independent and nonprofit source of news, analysis and commentary from academic experts.) Lisa C. Lindley, University of Tennessee (THE CONVERSATION) The Affordable Care Act once again is headed for a date with the Supreme Court, with health insurance coverage for tens of millions of Americans possibly on the line in a case that will be heard Nov. 10, 2020. But a much smaller group of people with exceptional needs could also lose coverage ‘” children with cancer and other serious diseases. This benefit is an example of another benefit of the ACA, and one that many people don’t know about, that could go away if the court strikes down the ACA. Under the law, children with cancer and other serious illnesses who are enrolled in hospice care ‘” or end-of-life care ‘” can still receive coverage for medical treatment. Through this provision, the ACA gives these very ill children and their parents a glimmer of hope. The law mandates an option called concurrent care – the option to continue treatment while in hospice. Since 2010, more than 20,000 terminally ill children have used concurrent care. Few people know of this one paragraph in the ACA. ACA, Section 2302 (Concurrent Care for Children) requires state Medicaid and the Children’s Health Insurance Program to cover ongoing treatment of a terminal illness and hospice care concurrently for kids under 21 years. This legislation has been an important part of my work for the past decade as a pediatric hospice researcher and associate professor at the College of Nursing, University of Tennessee, Knoxville. A decision no parent should have to face The ACA extended health care insurance to a broad range of people ‘” about 20 million. While the little-known provision about children with cancer may not be as broad in scope, the effect is deep. Until the ACA was enacted 10 years ago, there were two care choices for kids with cancer whose parents were told they had less than six months to live: They could continue treatment for their little ones, or they could decide to cease treatment and enter hospice. In most cases, when a patient enters hospice care, insurers no longer will pay for treatment. Instead, the care becomes comfort care. The decision to enter hospice care is always one of the toughest decisions patients and their families ever make. It is impossible to know the heartbreak that parents of children with cancer must make in choosing between hospice care or treatment. Hospice may be connected in many people’s memories to a grandparent, mother or father who had hospice care before they passed away. But what you might not know is that hospice is available to children. Pediatric hospice provides many of the same services your adult family member received, but with smaller stethoscopes and a lot more people involved, including parents, siblings, grandparents, aunts, uncles, cousins, school friends and neighbors. Medical advances have improved life expectancy for children with cancer, and yet more than 30,000 children die each year of health-related problems. Under the ACA, children with cancer have been able to continue their chemotherapy and radiation, while using hospice services to manage pain, symptoms and other psychosocial needs ‘” ensuring a better-quality end of life. And families could continue to hope for any cure. Children with cancer and their families have a need for the ACA. From evidence to legislation