Ron’s Right-to-Try legislation praised in the Milwaukee Journal-Sentinel

Ron has introduced Right-to-Try legislation that would give terminally ill patients the right to try experimental drugs that could save their lives. Below, Tim Wendler writes an op-ed in the Milwaukee Journal-Sentinel about losing his wife to ALS and praises Ron for championing Right-to-Try legislation that could save patients like his wife in the future.

Giving patients a “right to try”
By Tim Wendler
Milwaukee Journal Sentinel
May 14, 2016

Three years ago, we were your typical family. My wife and I had been married for 10 years, we had three young kids, we both worked hard and were making progress in our pursuit of the American dream. We were involved with our schools and our community, spent time with our families and we had saved up enough to recently build a house. Then in April of 2013, my wife Trickett developed a limp while on a business trip. Something was definitely wrong. The diagnosis was ALS.

Our first reaction was as you’d expect. We scoured the country to find the best doctors, medicine, and treatments. Time after time, we would walk into those offices, listen hopefully to the doctors, and then walk out discouraged. We became desperate. In fact, the only “treatment” prescribed for my wife was the exact same drug prescribed to her father — literally no progress in over two decades. Without a cure, we struggled to accept the certainty of a terminal diagnosis — in other words a death sentence.

Once we were out of options, our desire to alter the possibilities became the singular focus of our life. We participated in clinical trials, started fundraising, visited drug manufacturers, and raised awareness wherever we could. We scrambled to make memories with our kids taking trips and spending every waking moment together. But eventually the disease took over. Soon it became impossible to travel to the clinical trial sites and our awareness and memory-making efforts diminished. Time and our options were evaporating before us.

Trickett passed on March 18, 2015.

I now have three small children with a hereditary gene that predisposes them to this intolerant disease. My focus today is ensuring there is an understanding of the importance of providing hope where none exists. I pray every day that progress is made to find a cure for ALS and that my children are not given the same drug that their mother and grandfather were given.

This is why I’m thankful for “Right to Try” legislation. This legislation allows terminal patients to try investigational treatments that have been deemed safe when no alternatives exist. More than two dozen states have passed some version of this law, and we are appreciative of members of Congress such as Sen. Ron Johnson for championing federal legislation.

If God forbid, my children become ill and a cure is still not available, I pray that they’ll have the right to try. Ultimately Right to Try isn’t about doctors, the drug manufacturers, or politicians. It’s about providing patients with something none of those groups can: hope.