Speech-Matthew Telfer

The Right to Try

The right to try. Well, I can try a lot of things in Kentucky. Except, let’s say I’ve just been diagnosed with an illness that will eventually kill me in six months. I’m not ready to die, but I would not be able to acquire experimental drugs that could save my life because Kentucky has yet to even propose legislation that would allow me to access them without the FDA’s approval. Why should we deny people in this position this fundamental right? These drugs may be their only chance of living. The Right to Try Laws allow terminally ill people to bypass the federal government to access experimental drugs that have completed Phase 1 safety testing in the US Food and Drug Administration.  Throughout the next few minutes, I’m going to explain the causes of Right to Try Laws, the effects of its absence in many states and what we can can do to implement it in Kentucky while addressing counterclaims.

There are several factors that are contributing to the need for Right to Try laws around the country and many of them lead back to the US Food and Drug Administration. The FDA was established in 1906 with the goal of reining in serious abuses in the consumer product marketplace. Yet, the FDA in recent years has been ineffective. According to the US Department of Veterans Affairs, “The FDA approval process for new drugs typically takes about 10 to 15 years and costs companies about $800 million from testing in clinical trials to market in pharmacies.” The  FDA’s approval process is pitiful in terms of efficiency. The Wall Street Journal compared the FDA’s efficiency to other countries around the globe in the following quote concerning the new drug Esbreit:

There were no effective treatments until InterMune, a U.S. company, developed a breakthrough therapy called Esbriet. The FDA finally approved it for use in the U.S. in October 2014— nearly five years after an FDA advisory committee had recommended approval. Meanwhile, Esbriet was available in Japan seven years earlier, in Europe four years earlier, and in Canada two years earlier

There is no excuse for the FDA’s outdated approval process because terminally ill patients cannot simply wait around. We need to update our system so that it can be as efficient as or even better than Japan and Europe’s regulatory agencies. This lack of efficiency has directly led to the growing popularity of Right to Try laws in many states. 

The lack of Right to Try Laws in states across the country have led to serious consequences. Take Jenn McNary’s story. A mother of two boys named Max and Austin. She learned after a doctor’s check up that both boys had a disease known as Duchenne Muscular Dystrophy. The horrific disease has a 100% mortality rate if not treated. Her youngest son, Max was able to take part in an FDA clinical trial for the drug Eteplirsen which improved his health significantly. Yet this was not the case for her oldest son Austin. Austin was not selected for the FDA’s clinical trial for the drug that could possibly save his life. His condition kept worsening to the point where he could not even pick up a glass of water. Her son was dying yet there was nothing she could do except sit there and watch. No family member should have to go through this. No person should die without having a chance of living. The importance that a Right to Try law has on a person’s life is too significant to ignore.

So speak up and write to your local state representatives because we cannot wait. Inform them of all the benefits this law would create if it was enacted here in Kentucky. As Kurt Altman, a national adviser for the Goldwater Institute, described it “ I like to say that it's not a Democrat or a Republican issue -- it's really a human issue.”

Opponents against the law argue that experimental drugs not approved by the FDA can cause harmful side effects and expedite the death of the terminally ill. Yet, the terminally ill patients are fully aware of the risks. Many spend countless hours researching the possible effects of ingesting a specific drug that has not yet been approved. Also, the drugs pass through Phase 1 of FDA safety testing which tests the toxicity of a drug and whether it is safe. Others may argue that the FDA has a program already in place that allows the terminally ill to access experimental drugs. Yet, according to the Wall Street Journal  “What the agency neglects to mention is that 99% of patients never complete the application process. Why? In part, because the application process is so complex it takes an average of about 100 hours to complete.” The patient’s physician are left with the burden of completing the paperwork and many do not have the time and resources.

Darcy Olsen, the President of the the Goldwater Institute, once said “Terminal patients shouldn’t have to ask the government for permission to try to save their own lives.” No person should should have to fight for their life and fight the government at the same time. 24 states have already passed Right to Try Legislation, why can’t Kentucky be number 25? There is no guarantee that these drugs will work yet it still gives these people the option. An option to be able to see their families again. 

An option to live their life again.  In the last few minutes, I’ve explained the causes of the Right to Try law, the effects of its absence in many states and what we can do about it while addressing a couple of counterclaims. The FDA’s drug approval system is too inefficient and people everywhere are dying because of it. The time is now to act.

Works Cited

War on Health, FDA's Cult of Tyranny. Dir. Gary Null. Gary Null Films. 10 July 2012. Web. 13 Dec. 2015.

Olsen, Darcy. "Winning the Right to Save Your Own Life." WSJ. The Wall Street Journal, 26 Nov. 2015. Web. 13 Dec. 2015.

Olsen, Darcy. The Right to Try: How the Federal Government Prevents Americans from Getting the Life-saving Treatments They Need. New York City: Harper Collins, 2015. Print.

“HIV/AIDS." How Long Before a Drug Is Approved by the FDA? -. The US Department of Veterans Affairs. Web. 13 Dec. 2015.

The "Right To Try" Digital image. Red Dirt Report. 10 June 2015. Web. 13 Dec. 2015.