The month of May is ALS awareness month. As a part of that, I will be working all month long to gain support for Bill H.R. 3012 the Right to Try Act of 2015. This bill, when passed will grant terminally ill patients access to potentially life savings treatments that are still undergoing trial and have passed a safety trial. I have been trying to gain support from my Congressman for some time now, and encourage you to get in touch with yours as well!
The following is my first email to my Congressman of ALS advocacy month. I will be emailing him daily until I get a response and an opportunity to discuss the bill with him:
Dear Congressman Cicilline,
Happy ALS Advocacy month! This month I will be doing everything I can to get support for Bill H.R. 3012 the Right to Try Act of 2015. I want to encourage others to join in around this country, so I will be sharing this and all of my emails with you online.
I have been trying to get a response from you for about two months now. Initially I had an appointment with you for March, 29 to discuss Bill H.R. 3012 with you. This appointment was canceled by a member of your staff and I was told would be rescheduled. I have since called multiple times to try to get a date and keep getting told that someone will call me back or given a new person in your office to email. I would really like the opportunity to discuss this bill with you as it could help save my life and the lives of thousands of other people fighting ALS.
As I have mentioned previously, my name is Robert (Bobby) Forster and I am a 27 year old Newport resident fighting for my life. I was diagnosed with ALS in 2014, a disease with no effective treatments approved by the FDA. However, there are many promising treatments that are currently in FDA approved trials. Bill H.R. 3012,The Right to Try Act of 2015, would allow terminally ill patients like myself the ability to try potentially life saving treatments that have passed a phase 1 safety trial. I was involved in a phase 2b trial last year that resulted in tremendous improvements. However, because it is not yet approved by the FDA, I cannot continue with treatments until it is approved (likely 3 years). By the time that this treatment is approved I along with thousands of others will likely be dead. So I beg you to please sign on as a cosponsor to this bill. Doing so will literally help save my life. I look forward to hearing back from you. Thanks so much and have a great day!