Childhood cancer survivors and the US Affordable Care Act

A new LTFU study shows that only a quarter of survivors are familiar with the US Affordable Care Act (ACA) and even fewer — just 1 in 5 — felt they could benefit from its protections.

Published 3/1/2015

Affordable Care Act

The US Affordable Care Act (ACA) requires all health insurance providers to offer important features for childhood cancer survivors such as affordable primary care coverage, the ability to choose one’s doctor, and penalty-free coverage of pre-existing conditions; it also offers people with moderate and low incomes ways to reduce the cost of premiums, deductibles, and co-pays.

However, an LTFU Study showed that only a quarter of survivors were familiar with the law and even fewer — just 1 in 5 — felt they could benefit from its protections, which may prevent them from gaining access to quality healthcare.

Of particular concern, this study showed that uninsured survivors were much less likely than insured survivors to be familiar with the benefits and protections of the ACA. This suggests that people who could most benefit from the law might be the least likely to take advantage of it.

Dr. Elyse Park, who led the research team, noted that for survivors to benefit from the ACA, “it’s crucial for doctors, hospitals, and survivor advocacy groups to become involved in educating survivors and helping them take advantage of the law to gain access to health insurance.”

The law offers many potential benefits for survivors, and it covers many features that survivors report they care about; however, there are some concerns that survivors should be aware of. For example, the law requires all insurance policies to provide coverage for services that are considered essential, such as pregnancy and newborn care, behavioral health treatment, and rehab services.  Not all these essential benefits were previously required, so it’s possible some people might see their premiums increase as a result of the ACA.

In addition, the essential coverages required by the law don’t include the risk-based preventive screenings that are recommended for survivors based on their specific treatment exposures. So, these might not be covered for all survivors. In response to these concerns, Dr. Park calls for “survivor navigators,” trained individuals who can help survivors overcome barriers to quality medical care and help them access survivorship care and services. 


Childhood cancer survivor study participants' perceptions and understanding of the affordable care act. Park ER, Kirchhoff AC, Perez GK, Leisenring W, Weissman JS, Donelan K, Mertens AC, Reschovsky JD, Armstrong GT, Robison LL, Franklin M, Hyland KA, Diller LR, Recklitis CJ, Kuhlthau KA. J Clin Oncol. 2015 Mar 1;33(7):764-72.