Providing Realistic Opportunity To Equal and Comparable Treatment for Rare Act

Providing Realistic Opportunity To Equal and Comparable Treatment for Rare Act or the PROTECT Rare Act

This bill provides for coverage under the Medicare prescription drug benefit, Medicaid, and private health insurance of certain drugs that are used to treat rare diseases or conditions (i.e., diseases or conditions that affect 200,000 or fewer individuals). Such drugs must be supported by peer-reviewed research or medical experts and must not have been reviewed unfavorably in specified compendia or used in a way that conflicts with approved labels.

Bill 118 hr 6094, also known as the Providing Realistic Opportunity To Equal and Comparable Treatment for Rare Act, aims to address the challenges faced by individuals with rare diseases in accessing necessary treatments and care. The bill recognizes that rare diseases affect a significant portion of the population, with over 25 million Americans living with a rare disease.

The key provisions of the bill include the establishment of a Rare Disease Center of Excellence within the Department of Health and Human Services. This center will serve as a centralized resource for research, education, and coordination of care for individuals with rare diseases. Additionally, the bill calls for the creation of a Rare Disease Advisory Council to provide guidance and recommendations on policies related to rare diseases.

Furthermore, the bill seeks to improve access to treatments for rare diseases by streamlining the approval process for orphan drugs and providing incentives for pharmaceutical companies to develop treatments for rare diseases. It also includes provisions to enhance research and data collection on rare diseases, as well as measures to improve insurance coverage and reimbursement for individuals with rare diseases. Overall, the Providing Realistic Opportunity To Equal and Comparable Treatment for Rare Act aims to address the unique challenges faced by individuals with rare diseases and improve their access to necessary treatments and care. It represents a bipartisan effort to support individuals with rare diseases and ensure they receive the equal and comparable treatment they deserve.