For the 1.3 million Americans living with blood cancers, their already daunting condition is not made any easier by the fact that private health plans — particularly those on the Affordable Care Act exchanges — often exclude National Cancer Institute (NCI)-designated treatment facilities from their provider networks, according to a new analysis.

The report, produced by Manatt Health and The Leukemia & Lymphoma Society, focused on four states’ policy and regulatory frameworks governing marketplace plans, with researchers conducting interviews with state regulators, insurers and cancer care providers to learn about “policy challenges that may hamper patients’ ability to navigate and obtain proper treatment for their cancer.”

It found that there is significant variation in how states regulate plan network development, network maintenance, appeals and grievance rights and processes, and other cancer care-related consumer protections. The appeals-and-grievance process is the primary tool that allows patients to seek medically necessary out-of-network care, but that process is often very difficult to navigate, the report argued. In fact, payers and state regulators reported that patients “often do not appeal plan decisions, due partly to complex appeals and grievances process or simply a lack of awareness.”

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