Washington, D.C., March 14, 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 in regards to last night’s vote in the House of Representatives on the latest version of the Right to Try Act:
“Yesterday evening, the House of Representatives failed to pass the latest version of the Right to Try Act. We are relieved the bill will not be moving forward at this time and thankful for the many Representatives who voted against the creation of a less-safe, redundant pathway for accessing investigational therapies outside of clinical trials. We are also grateful for the 84 organizations who joined us in expressing opposition to this bill.
While we opposed this bill, we strongly support increasing access to experimental therapies for individuals with terminal conditions. We hope Congress will turn its attention toward real solutions that address the current barriers to access. For example, Congress should propose 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 the Food and Drug Administration (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. We should invest in outreach and education to the patient community and ensure our liability laws do not act as an undue deterrent.
Right to Try will not help our patients access experimental treatments, but there are several real solutions that could. We urge Congress to turn its attention to these real solutions and stop pursuing an ineffective, less-safe alternative pathway.”