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Mar. 14, 2018

TOPIC: Advocacy, Featured News

NORD Issues Statement Regarding House Vote on Right to Try

Posted by Christina Jensen

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.”

2 Responses to “NORD Issues Statement Regarding House Vote on Right to Try”

  1. Donna Darnley says:

    Lyme Disease should be a contender to be included on your list of rare diseases. Or, you should consider giving this phantom disease that has the same symptoms as Lyme, carries the same co-infections to it’s new host as those of the Lyme spirochete. Since only 50% test positive under the CDC Band test, therefore there must be a new emerging rare disease we must consider. More couples are being infected by their partner and increased Babies born with Autism if either parent were infected from this epidemic rare disease.
    I do question The CDC decision to select one strain out of over 100 other strains of this species that could have been the culprit, giving you the same dibilating diseases. Not at all scientific nor is their methodology producing quality assurances to allow them to determine who does and who doesn’t receive treatment. So, someone will have to explain to public why the warning of this epidemic disease was covered up and research funds were placed in companies for the benefit of others siting on drug companies Boards while also serving as a sitting Senator. The list goes on…no drug company came up any drug to effectively treat those who weren’t aware of their bit until outside of the 3day. These Spirochetes leave your bloodstream within 3days and head for deep tissue organs or the brain.

  2. Donna Palita says:

    Thank you for standing up and making a difference. Thanks again!