STATE HOUSE — Rep. Joseph M. McNamara (D-Dist. 19, Warwick, Cranston) has introduced legislation that would make treatment for rare diseases more accessible and affordable.

The legislation (2020-H 8078) would create the Rhode Island Rare Disease Medication Accessibility, Affordability and Reinsurance Act, which would provide for establishment of the rare disease medication reinsurance program to be funded by insurer contributions.

“Patients with rare fatal or debilitating diseases have been given new hope because of technological advances in medical research,” said Representative McNamara, “But the cost of those treatments can be exceedingly high, and the rareness of the conditions can compound those costs, leading to financial trouble for individuals, employers and insurers. Sometimes these organizations have no choice but to drop coverage of these expensive treatments all together. This bill would facilitate coverage and fair financing by allocating the costs for those medications as broadly as possible.”

The program would be administered by the Secretary of Health and Human Services based on recommendations from a 15-member advisory council. The bill would authorize the Executive Office of Health and Human Services to administer a fund to pay for a portion of the coverage by collecting funds from payers as broadly as possible, based on estimated costs, and distributing the funds to any insurer, plan, or program that paid for a patient to be treated with one of the identified drugs. The bill would not create any new financial liability for the state.

Representative McNamara, who chairs the House Committee on Health Education and Welfare, is a longtime advocate of patients’ rights. Earlier this year, the House of Representatives passed his bill (2020-H 7266) that would allow chronically ill patients to obtain experimental drugs that have not yet been federally approved but which may be in the final stages of FDA testing.

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