What About Bobby is a column that is written by Bobby Forster, a 27-year-old Newport resident living with ALS
If you’re new to this series or missed a recent story by Bobby, it may be helpful to catch up on what he’s been talking about. Here’s story #1- What About Bobby: What Would You Say If You Were Told That You Would Be Dead In Two to Five Years? and here’s story #2 – What About Bobby: A Thank You To My Hero.
“I know that you are going to die, but the treatment that could save you might not be safe, so you can’t have it.”
This is the basic statement from the FDA and the US government in answer to its citizens who are terminally ill. In general, I am someone who can wrap his head around both sides of a disagreement, even though I may not agree with the other side. I have one issue that drastically affects my life that I just can’t understand the opposing argument. I am talking about the Right to Try.
If you knew you were dying of a disease that there is no current cure for, would you want to be able to have the option to try an experimental treatment?
I am living in this exact situation but with an infuriating twist. Last fall, I was in a phase 2b clinical trial. The trial was conducted at Massachusetts General Hospital and was for Brainstorm’s NurOwn. The treatment for me, yielded great results. Prior to the treatment, I was in a wheelchair; I was unable to walk at all and could only stand for a little while before I collapsed from my weight. Two weeks after I had the treatment, I was able to stand up without fear of collapsing. A few days later, I could shuffle my feet to walk with the aid of a walker. Three weeks after I had received the one-time procedure, I was able to pick my feet up again. I also had breathing improvements, speech improvements and a drastic increase in energy. The improvements then plateaued for a bit before I began declining again; essentially, the treatment was wearing off.
The logical thing to do next would be to get another injection right? Wrong! Unfortunately, that wasn’t an option for me. Because the treatment is still in clinical trials, I can’t get it again until the FDA approves it. Unfortunately that is still years away from happening. Which is outside of my prognosis of a two to five-year life sentence.
So what the fuck? I am dying and being told that I cannot have the treatment, that I clearly benefit from because why????
This is why I am a big supporter of the Right To Try legislation. This is a federal bill that would essentially give terminally ill patients the right to try any treatment that has successfully passed a phase 1 safety trial and is still in FDA approved clinical trials. As it stands, the time it takes to get a drug approved by the FDA is 10-15 years, which is unacceptable for those living with terminal illnesses.
This legislation is going to be coming up for a vote shortly after the elections are over. It was recently blocked the Senate Minority Leader for partisan issues (video below). This was a huge blow to myself and everyone else living with a terminal illness. So I beg you to please contact your state and federal representatives and ask them to please support this bill. Doing this will give thousands of people hope and a fighting chance.
To learn more about the Right To Try movement please check out http://righttotry.org/about-right-to-try/.
For more information on Bobby, visit www.acureforforster.com.