 | On January 22nd, PIPC submitted a response to Senate Health, Education, Labor and Pensions (HELP) Committee Ranking Member Bill Cassidy’s (R-LA) request for information (RFI) on ways to improve access to cell and gene therapies. |
The letter emphasizes that access to cell and gene therapies is too restrictive, often leading to denials or onerous cost sharing for patients. In the Ranking Member’s future legislative efforts on this issue, PIPC urges consideration of patient perspectives in decision-making criteria related to patient access to these novel cell and gene therapies.
Other recommendations contained within the letter include:
“Cell and gene therapies treat diseases and conditions that are often disabling for people that live with them,” wrote PIPC Chair Tony Coelho. “We share your concerns about the need to improve and protect access to these novel treatments, and look forward to continuing to engage with you.”
Other recommendations contained within the letter include:
- Considerations related to the value and effectiveness of cell and gene therapies should incorporate patient perspectives, avoid discriminatory and biased measures and health utilities.
- Congress should ban use of QALYs and similar measures consistently across federal programs.
- Congress should not adopt foreign government policies related to reimbursement and coverage of cell and gene therapies.
- Shared decision-making and criteria for patient-centeredness should be central tenets of policies related to how patients access cell and gene therapies.
- Advisory Committees should be informed by patients with lived experience and their providers.
- Coverage and utilization management policies should not be selectively based on a person’s level of disability or biased perceptions of quality-of-life, leading to discriminatory judgments about a person’s worthiness of treatment.
- Exclusion from clinical trials is not a nondiscriminatory reason for coverage and utilization management decisions that deny or restrict access to care.
“Cell and gene therapies treat diseases and conditions that are often disabling for people that live with them,” wrote PIPC Chair Tony Coelho. “We share your concerns about the need to improve and protect access to these novel treatments, and look forward to continuing to engage with you.”
| pipc_cassidy_rfi_final.pdf |
