The right to try: give hope to terminal patients

Tom Lampman Nov 23, 2015

Darcey Olsen’s recently released book Right to Try gives a powerful look at how states can defend the rights of the terminally ill. The book takes its title from the “Right to Try” laws enacted in 24 states, which allow terminal patients to access potentially lifesaving treatments without full FDA approval.

FDA approval is a long, costly procedure. After treatments are proven safe they are subjected to numerous clinical trials to demonstrate effectiveness. These effectiveness trials often take years, and patients are denied access to safe treatments until the FDA is convinced they are effective.

Of course, terminally ill patients rarely have years to wait and, with no other options, they may be more willing to try something unproven than a board of FDA bureaucrats.

Right to Try showcases stories of patients seeking innovative new treatments for cancer, Duchenne Muscular Dystrophy, and other fatal diseases. In each case, potentially lifesaving treatments existed but were not approved by the FDA.

 For example, consider Diego Morris, an eleven-year old from Arizona who suffered from a rare form of bone cancer. Diego’s family had to move to London in order to get access to mifamurtide, an award-winning treatment used in the EU but not approved by the FDA.

With the help of mifamurtide, Diego recovered and became a champion of the Right to Try movement in Arizona. In 2014, Arizona voters turned out by the millions to vote for Prop 303, giving terminally ill patients the right to seek out promising treatments like mifamurtide.

Unfortunately, not every story ends as happily as Diego’s. Many patients, children and seniors alike, die every year waiting for their best option to be rubber-stamped by Washington.

Right to Try laws have been enacted in 24 states now, crucial for those patients who desperately need access to drugs languishing in the FDA bureaucracy. Unfortunately, Ohio is not one of these states.

Representative Robert Sprague (R-Findlay) has introduced House Bill 290, which, if passed, would allow terminal patients access to drugs that have cleared safety trials. Following testimony from muscular dystrophy patients, the bill may be amended to allow even more access to potentially miraculous cures.

Proceeds from the sale of Right to Try are used to advance the rights of the terminally ill nationwide.