Rare Disease Patients Face Access Challenges

by Amanda Conschafter, Blog Editor

Co-insurance can be much more expensive than co-payments, and step therapy can turn your prescription medication regimen upside down.  These insights and others made up Wednesday’s “Navigating Health Insurance Issues” webinar, the first in a two-part series offered by Global Genes.  Featuring panelists from Patient Services Incorporated,  Horizon Government Affairs and the Immune Deficiency Foundation, the presentation offered guidance for rare diseases patients on achieving optimal health insurance coverage – and explored how insurers’ cost utilization methods affect patient care.

For patients suffering from rare diseases, determining coverage needs can be tricky.  Larry LaMotte of the Immune Deficiency Foundation suggested that patients consider whether their physicians are in network, which services are covered by the plan in question, and the insurer’s drug formulary.  Rare disease patients, he emphasized, should also consider any annual limits on specific visit or treatment types.  And they should know whether rare disease is covered by the plan’s major medical or pharmacy benefit.

Beyond these basic factors, the webinar emphasized, patients should understand how insurers’ cost mechanisms affect their access to care.  For example, Jim Romano of Patient Services Incorporated explained that co-insurance typically entails much higher patient expense than co-payment, despite common confusion about the similar-sounding terms.   Patients with rare diseases may discover that insurance plans use specialty tiers for certain medications – and tie high co-insurance rates to these tiers.  For rare diseases patients who often require expensive therapies, these payment structures can limit access.  Romano also explained that  step therapy, or “fail first,” policies also affect rare disease patients by requiring them to first take the cheapest iteration of a drug (and proving it to be inefficient) before accessing the name brand version.

These considerations should be paired with more traditional cost factors, such as premiums and co-payments, to assess coverage plans.  But, as Joel White of Horizon Government Affairs explained, patients should be aware that premiums are poised to increase in coming years.  For HealthCare.gov and state exchanges’ inaugural year, many insurers strategically kept premium prices low to achieve market share.  Moving forward, White warned, these premiums could increase by double digits to keep insurers profitable in the post-Affordable Care Act market.

As the webinar suggested, cost utilization methods may play an increasing role in rare diseases patients’ ability to access the care and medication they need – by shifting more of the cost burden to patients with unique medical needs through restrictive drug formularies, specialty tier co-insurance and step therapy.


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