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Oct
16

Public Comment needed on two model insurance regulations

The National Association of Insurance Commissioners (NAIC) is a standard-setting and regulatory support organization created and governed by chief insurance regulators from all 50 states, D.C., and five U.S. territories. State regulators work through NAIC to establish standards and best practices, and to coordinate regulatory oversight (e.g., through the adoption of Model Laws and Regulations). Following enactment of the ACA, the NAIC undertook a number of work streams to build, enhance or clarify state-based regulation of health insurance.

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Aug
20

New Rhode Island Law Prescribes Affordable Medical Foods for Rare Diseases

From an Aug. 19 Valley Breeze article , Lincoln, Rhode Island:  Legislation requiring insurance coverage for special baby formula and prescribed food is now law in Rhode Island.

The new measure abolishes the mandated cap on coverage for those suffering from rare diseases and inherited disorders requiring prescribed nutrition mandates. The bills sponsored by state Sen. Ryan W. Pearson of District 19 in Cumberland and Lincoln, and state Rep. Raymond A. Hull of District 6 in Providence and North Providence, induced testimony from patients and family members of patients who require prescribed diets and formulas during the hearing process. Read More

Aug
18

Sept. 17th & 18th Rally for Medical Research Lobby Day

Medical Research is an issue that the rare disease community cares deeply about. If you would like to participate in this year’s rally: register here

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Public Comment needed on two model insurance regulations

The National Association of Insurance Commissioners (NAIC) is a standard-setting and regulatory support organization created and governed by chief insurance regulators from all 50 states, D.C., and five U.S. territories. State regulators work through NAIC to establish standards and best …

Huntington’s Disease Action Alert

The Huntington’s Disease Society of America is asking advocates to contact their Members of Congress to expedite Social Security Disability Insurance for patients upon diagnosis.

Huntington’s Disease is a rare, fatal, genetic neurodegenerative disease that progressively causes total physical and …

The Immune Deficiency Foundation Requests Support for Legislation: H.R. 460 Patients Access to Treatment

Under many private insurance plans, patients with rare diseases continue to pay extremely high out-of-pocket costs because their prescribed medication is often placed on a “specialty tier.” Specialty tiers allow plans to impose high coinsurance, in lieu of a co-payment

CMS Letter to Ensure Patients with Chronic Disease Have Access to Treatments

The AIDS Institute, Epilepsy Foundation, and National Alliance on Mental Illness is asking organizations to sign on to a letter to the Centers for Medicare & Medicaid Services (CMS) to ensure patients with chronic diseases have access to affordable treatments.  If

Alliance for a Stronger FDA

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