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October 7, 2014

Contact: Michael Kelley

(602) 633-8965



Issue hits close to home for lawmaker whose terminally ill daughter has been denied access to promising treatments


A Missouri legislative committee is poised to approve a bill Wednesday that, if enacted, could dramatically cut the time it takes for life-saving drugs to reach the hands of patients and their doctors. The multiyear federal approval process currently in place means that many sick Americans die waiting for life-saving medications to become available, even though these treatments already exist.


The reform, known as the “Right to Try” Act, would empower terminally ill patients under the care of licensed doctors to access experimental drugs that have passed basic safety tests but whose efficacy is not yet conclusive. Currently, it takes nearly a decade and up to $1 billion to shepherd life-saving treatments through the FDA approval process—time the sickest Americans simply do not have to wait.


500,000 Americans died last year from cancer alone, with thousands more dying of other terminal illnesses. Many dying patients who have exhausted traditional treatment options attempt to enroll in clinical trials, but the vast majority are denied access because their illnesses have progressed too much or there are other complicating factors. 40{010c6536f15f83a69f09c4467fdfb4a5656804feab27fe0dec71ed1e80da306f} of cancer patients ask for access to clinical trials each year, but only 3{010c6536f15f83a69f09c4467fdfb4a5656804feab27fe0dec71ed1e80da306f} of those dying from terminal illnesses ultimately gain admission.


For medical doctor and State Rep. Jim Neely, who is sponsoring Right to Try in Missouri, the issue is one that impacts his own family.


His adult daughter Kristina was pregnant when she was diagnosed with colon cancer last spring, which made her ineligible for enrollment in any clinical trials. Now, liver failure from her rapidly progressing disease is leaving her with even fewer treatment options. While there are hundreds of clinical trials being conducted to study new colon cancer treatments that could give Neely’s daughter more time, she can’t access them because they won’t reach the market for several more years – time the Neely family fears they may not have to wait.


“This is about more than just one patient, it’s about guaranteeing the rights of those who are most in need,” said Neely. “People fighting for their lives shouldn’t have to battle red tape. The Right to Try Act gives terminally-patients a chance to continue their fight when the FDA has left them with no other options.”


The Goldwater Institute, which designed the Right to Try Act, is working with lawmakers like Rep. Neely throughout the country to ensure that no American is denied access to treatments that could save her life.


“The Right to Try Act restores medical freedom to Americans at the most critical point possible,” said Darcy Olsen, Goldwater Institute President and CEO, “At the moment when their mortality hangs in the balance.”


Lawmakers in Arizona approved the Right to Try Act in legislative committee earlier this month, and are expected to green-light the measure on the state house floor this week. Colorado legislators will hear the reform in early March, and legislators in Oklahoma and Louisiana are expected to consider bills later this spring.



To schedule an interview with Goldwater Institute President Darcy Olsen or Missouri State Representative Jim Neely, please contact Michael Kelley at the Goldwater Institute at (602) 633-8965 or The Goldwater Institute has an in-house VideoLink studio for rapid cable hook-up if needed.




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