The Alliance for Patient Access / IfPA’s Patient Access Policy Blog / Limited Networks May Limit Options for Rare Disease Patients

Limited Networks May Limit Options for Rare Disease Patients

by Amanda Conschafter, Blog Editor

Limiting health care provider networks may save money for insurers grappling with the Affordable Care Act. But they complicate care for rare disease patients, who may increasingly find their specialty providers outside their insurance plan’s narrowing network. Panelists at Global Genes’ Navigating Insurance Issues Part 2 webinar this week said patients must doggedly pursue access to the care they need –partnering with their specialty physicians, related advocacy groups and the pharmaceutical manufacturers who produce the medical therapies they require.

Overcoming network limitations takes several forms, as Julie Raskin of Congenital Hyperinsulinism International explained. Admission to (or outpatient treatment at) out-of-network hospitals can require letters of medical necessity from the patient’s specialty doctor or peer-to-peer reviews.   Letters from related advocacy organizations can also help sway decision makers. Likewise, convincing insurers to cover medications not included in a plan’s drug formulary requires a formulary exception request. Patients can ask their doctor to write a letter explaining the importance of this medication, while pharmaceutical manufacturers’patient support personnel may also be helpful.

Accessing specialists without coverage can entail exorbitant out-of-pocket expenses, noted Stephanie Bozarth of the National MPS Society. Exacerbating the problem, these costs may not count toward patients’annual out-of-pocket maximum. But with their access to specialists limited, rare disease patients’other alternatives –misdiagnosis, less-than-ideal disease management and expensive ER visits –are also costly. Bozarth suggested that rare disease patients discuss continuity of care coverage and gap exceptions with their insurers to avoid these scenarios.

Pam King of Global Patient Strategies acknowledged step therapy, quantity and dosing limits, and plan changes as additional challenges for rare disease patients.   Like her fellow panelists, King encouraged patients facing narrowing networks to reach out to providers and pharmaceutical manufacturers for help appealing restrictions and denials of coverage.

The post-Affordable Care Act trend toward narrowing networks reflects insurers’ struggle to control costs under a system that requires them to cover a broader range of patients. Insurers may identify the lowest-cost providers and include only those physicians in their network, Bozarth posited. Or, they may leverage a limited network to negotiate better reimbursement terms, promising to drive more patients to the reduced number of in-network providers. However insurers use limited networks to minimize costs, the approach compels rare disease patients to connect with a wide range of advocates –persistently pursuing access to the care and medical therapies they need.

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The Alliance for Patient Access is a national network of physicians dedicated to ensuring patient access to approved therapies and appropriate clinical care.
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