“States should enact ‘Right to Try‘ measures to protect the fundamental right of people to try to save their own lives. Designed by the Goldwater Institute, this initiative would allow terminal patients access to investigational drugs that have completed basic safety testing, thereby dramatically reducing paperwork, wait times and bureaucracy, and, most importantly, potentially saving lives,” according to the Goldwater Institute .
Christina Corieri in “Everyone Deserves the Right to Try: Empowering the Terminally Ill to Take Control of their Treatment” writes:
In 2002, Kianna Karnes, a 41-year-old mother of four children, was diagnosed with kidney cancer. She was treated with Interleukin-2, the only medication approved by the Food and Drug Administration (FDA) at the time to treat her disease. When that treatment failed, her father began researching investigational medications, learning in 2004 that both Pfizer and Bayer were conducting clinical trials for new investigational medications to treat kidney cancer. Karnes was ineligible for the clinical trial because her cancer had previously spread to her brain.
Although her brain tumors had been removed, she was still disqualified from joining the clinical trial, so her father sought expanded access for his daughter. Months passed before he was able to secure access for his daughter. He contacted Congressman Dan Burton’s (R-IN) office for assistance, and drew media coverage of Karnes’ struggle in the Wall Street Journal. On March 24, 2005, the FDA notified the family that it had approved a single-patient IND for Karnes.
Tragically, it was too late—Kianna Karnes died the same day access was approved. Less than a year later, both drugs were given final FDA approval to treat advanced kidney cancer.
Speaking after his daughter’s death, her father said, “I don’t know that either of these drugs would have saved Kianna’s life, but wouldn’t it be nice to give her a chance?”
The Goldwater Institute notes, “It takes a decade and a billion dollars to bring a new medicine to market—that’s time our sickest loved ones don’t have to wait.”
Lorraine Heidke-McCartin loves to run. She is currently training to run a 5K with her daughters this spring. A 5K isn’t much for most runners, but for her it’s the finishing stretch on a marathon that began in 2006. That was the year she was first diagnosed as a Stage IV (the most lethal and final stage) of an aggressive strain of breast cancer, HER 2. She immediately began a regimen of treatment with her doctor, undergoing rounds of chemo that sapped her energy, took her hair and gave her a great deal of pain. As her treatments progressed, so did her disease, until she had finally exhausted all of her available treatment options. She and her husband, Philip, began looking for another way to save Lorraine’s life.
In 2009, their doctor returned from a conference where she had heard about an experimental treatment that could be a life saver for Lorraine, T-DM1. They reached out to the drug company conducting the trials for T-DM1 and found the closest trial to their home in Boston was in Fairfax, Va. Lorraine and Phil jumped on the opportunity and got to Virginia as soon as possible. Lorraine would end up making over 16 trips back and forth in the course of her treatment before finally being allowed by the FDA to take the drug in Boston, thanks in large part to her incredible recovery. She has been cancer free since December 2011, thanks to an experimental drug and her ability to make the regular trips to a distant trial site.
The Goldwater Institute asks those who care to “call state lawmakers and tell them everyone deserves the right to try.”