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In August, the National Hemophilia Foundation, a member of the American Plasma Users, A-PLUS, Coalition, and in cooperation with the National Organization of Rare Diseases, submitted comments to the Office of Consumer Information and Insurance Oversight, a branch of the U.S. Department of Health and Human Services responsible for ensuring compliance with the new healthcare reform laws. The letters were sent in response to two recently released regulations implementing the private insurance market reforms included in the Patient Protection and Affordable Care Act (ACA), the healthcare reform law.  In general, the organizations were supportive of the rules and applauded the administration for working to protect consumers.  Some suggestions were offered, however, on ways to improve the regulations for people with bleeding disorders and other rare chronic conditions. 

The first letter, dated August 6, 2010, responded to regulations defining a "grandfathered health plan."  Grandfathered insurance plans do not have to meet most of the new requirements for private insurance plans included in the ACA. The regulation specifies the circumstances under which grandfathered status would be revoked.  NHF’s comment letter recommended that changes to a plan's prescription drug formulary, such as dropping coverage of orphan drugs and biologics, should result in the loss of grandfathered status.  The second letter, dated August 27, 2010, was in response to regulations regarding patient protections, including a ban on annual limits.  While supportive, the organizations expressed concern that the proposed three-year phase-out of annual limits did not do enough to help patients with high-cost diseases.

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