Testimony on Pharmaceutical Pricing That Balances Innovation and Affordability for Patients with Rare Diseases

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Editor’s Note: The following is a testimony delivered by Alice J. Chen to the Committee on Energy and Commerce on Feb. 29, 2024. More information about the hearing can be found here.

Key Points

  • Americans want innovation for rare diseases: these treatments improve the lives of patients, and patients highly value them.
  • Innovators need economic incentives to develop rare disease treatments and cures.
  • Pharmaceutical prices need to match the value of innovation.
  • Blunt price controls are not the answer: while they can enhance patient access to medications today, they do so at the expense of developing novel treatments in the future.
  • To strike a balance between incentivizing innovation and making treatments accessible for patients, we need to consider alternative financing mechanisms for drugs that deliver significant long-term value for patients.

Full testimony is available here.