Families USA Statement for the Record for Energy and Commerce Health Subcommittee Hearing on Rare Diseases

Families USA submitted this statement for the record in advance of the House Energy and Commerce Subcommittee on Health “Legislative Proposals to Support Patients with Rare Diseases” on February 29.

High and rising drug costs are an ongoing problem for million of families and a major factor as to why health care affordability is an American crisis. One of the most important steps towards addressing the high cost of drugs was passage of the Inflation Reduction Act of 2022 (IRA), which included critical reforms such as giving Medicare the authority to negotiate for fair drug costs. The administration is currently working to implement those reforms faithfully, the full impact of which will be felt by patients and their families when negotiated prices go into effect for the first ten drugs in 2026.

Families USA has concerns that some of the legislation discussed in today’s hearing would create unnecessary delays or carve-outs from IRA Medicare negotiation, in turn allowing big drug companies to continue price gouging families at the expense of their access to lifesaving and sustaining medication.