Washington, D.C., March 22, 2018 – The National Organization for Rare Disorders (NORD), the leading independent nonprofit organization representing the 30 million Americans with rare diseases, released the following statement regarding last night’s vote in the House of Representatives on the Right to Try Act:
“Last night, the House of Representatives passed the Right to Try Act. We are disappointed that the House has voted for a proposal that would create a less-safe, redundant pathway for accessing investigational therapies outside of clinical trials. We are grateful, however, for the over 100 patient and provider organizations that voiced their opposition to this bill and those 149 Representatives that stood with the patient community by voting no.
Right to Try will not help our patients access experimental treatments. As this legislation heads to the Senate, we will continue to voice our concerns with a pathway that creates confusion, instills false hope, and diminishes the ability of the Food and Drug Administration’s (FDA) to protect our patients.
We hope the Senate will recognize that patients deserve legislation that will genuinely increase access. For example, Senators should focus on legislation that reduces the financial disincentives companies encounter in offering their therapy through expanded access. Access to IRB review should be made more equitable, and FDA should clarify its use of adverse events in expanded access as well as create a structure for accepting and reviewing supportive data from expanded access. Congress should invest in outreach and education to the patient community and ensure our liability laws do not act as an undue deterrent.
We look forward to engaging with the Senate on this issue and advocating for our patients in the coming weeks.”