Washington, DC, November 19, 2021— Today, the House of Representatives passed H.R. 5376, the Build Back Better Act. In response, the National Organization for Rare Disorders (NORD), which represents the 25-30 million Americans living with a rare disease, released the following statement:

“Although NORD is encouraged by many provisions that will help improve access to and affordability of critical health programs and services for rare disease patients, the House-passed Build Back Better Act continues to include devastating changes to the Orphan Drug Tax Credit (ODTC). In a bill that would otherwise do so much good for so many Americans, it is unconscionable that Congress would target this critical incentive that has, for decades, successfully driven the development of new cures and hope for the rare disease community.”

“There are over 7,000 rare diseases and over 90% do not have an FDA-approved drug specifically used for these diseases. Thousands of NORD’s Rare Action Network advocates have contacted their legislators to share their concerns that limiting the availability of the Orphan Drug Tax Credit would jeopardize the development of new therapies for their conditions. NORD urges the Senate to remove this harmful provision when it considers the Build Back Better Act. We are committed to working together with Congress to protect individuals with rare diseases and their hope for a better future.”

NORD has helped champion several provisions included in the Build Back Better Act that would improve access and affordability of other critical health programs and services for rare disease patients. The rare community will benefit from many aspects of the House-passed bill, including: 

• A $2,000 annual cap on Medicare beneficiaries’ out-of-pocket prescription drug costs;
• A national paid family and medical leave program that would provide individuals with up to four weeks of paid leave to recover from a serious illness or care for a family member with a serious illness;
• Significant additional funding to improve patient access to home and community-based services through the Medicaid program;
• Provisions to improve access to health care coverage for people living in the 12 states that have chosen not to expand Medicaid eligibility;
• Permanent funding for the Children’s Health Insurance Program (CHIP); and
• An extension of the increased advance premium tax credits through 2025 to help make private health insurance coverage offered through the exchanges more affordable.

About the National Organization for Rare Disorders (NORD)
The National Organization for Rare Disorders (NORD) is the leading independent advocacy organization representing all patients and families affected by rare diseases in the United States. NORD began as a small group of patient advocates that formed a coalition to unify and mobilize support to pass the Orphan Drug Act of 1983. Since then, the organization has led the way in voicing the needs of the rare disease community, driving supportive policies, furthering education, advancing medical research, and providing patient and family services for those who need them most. Together with over 300 disease-specific member organizations, more than 15,000 Rare Action Network advocates across all 50 states, and national and global partners, NORD delivers on its mission to improve the lives of those impacted by rare diseases. Visit rarediseases.org.