The Affordable Care Act and Access to Cancer Care

Under the Affordable Care Act (ACA), health insurance providers can no longer arbitrarily cancel coverage when people get cancer, and lifetime coverage limits are prohibited.

But even with these protections, patients are discovering that many plans are limited to narrow networks of doctors and hospitals. Some large cancer centers don’t accept any of the insurance plans that are available through the Health Insurance Marketplace.

According to a 2014 study commissioned by the Leukemia & Lymphoma Society, many insurance plans available through the healthcare exchanges did not provide coverage for treatment and services at cancer centers with National Cancer Institute (NCI) designation. A 2014 Associated Press (AP) survey also found limited access to specialty cancer care. Of the 19 nationally recognized comprehensive cancer centers that responded to the AP survey, only four were included in all the insurance plans offered on their states’ exchanges.

“NCI cancer centers do a few very specialized things that you’re not going to get anywhere else,” says Jeffery Ward, chairman of the American Society of Clinical Oncology’s Payment Reform Workgroup. “Here in Washington state, if you want a bone marrow transplant, the only place to do that is the Seattle Cancer Care Alliance, and that’s an NCI Center.”

Under the ACA, health insurance plans sold through the health insurance exchanges must meet certain criteria to ensure that consumers have reasonable access to timely care. To contain costs, insurance companies create networks of covered healthcare institutions and providers. “Including every provider in your state can get very costly, because some providers charge rates that are far higher than similar providers in the area,” says Claire McAndrew, private insurance program director for the nonprofit Families USA.

Before inclusion on the healthcare exchanges, networks were required to meet broad standards for adequacy, including relatively easy access to the right mix of healthcare providers and services. But states had a lot of leeway about which plans counted as qualified health plans. Not only were plans not required to cover treatment at NCI Cancer Centers, they were also not obligated to cover specialized cancer treatments or access to cancer specialists with experience dealing with rare cancers. The lack of clear consensus on how to manage both rare and common cancers, and the proliferation of costly diagnostics and treatments, make it difficult to define what insurers should and should not cover in many cases.

Healthcare providers and consumer advocates worry that people who never anticipated dealing with cancer will find themselves with limited options and potentially high medical bills. “The people who will be most impacted by this will be people who bought an insurance plan and then discover that their choices are limited,” Ward says. “They may have to get care in their local community, or they may be limited to traveling to an institution that’s 50 miles away through rush-hour traffic.”

Still, the best care may be in the patient’s community, Ward says. For most cancer types, there is no difference in the quality of care provided by a general oncologist and a specialist. Patients who need specialized care out of network should ask about payment plans and financial assistance. They should also notify their legislators and state insurance department about any difficulties they have accessing necessary care.

“We’re all taught to never complain, but when it comes to whether people are getting their medical needs met in their health plan, it’s very important to voice your concerns,” McAndrew says.