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This page is dedicated to one of the best friends of my life, Kirt Beasley. Kirt was diagnosed with ALS / Lou Gehrig's Disease in 2003. |
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This page was published 12-10-2008. This page last updated 07-21-2012 Hey Buuuuuuudy! I just wanted to thank you for my gift for my birthday. Somehow we seem to give each other the same thing year after year after year.......NOTHING Happy Birthday, fucker.... |
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Here is some basic info: ALS (amyotrophic lateral sclerosis), commonly known as Lou Gehrig's Disease, affects the nerve cells in the brain and spinal cord. People with the disease progressively lose control over voluntary muscle functions, such as swallowing and breathing, and may become totally paralyzed. Although there is no known cure, there are drugs that have proven to have true measured efficacy. One particular drug "Iplex" was just recently released back into distribution per an amended settlement stemming from a patent infringement lawsuit. Iplex, although not used for any trials here in the U.S., has |
Kirt, pictured with his wife Terri, and daughters Sarah and Emily. |
been used with measured efficacy in ALS patients in Italy. An Italian health organization sued for the continued use of Iplex for 100 of their patients. This is indicative of the drug's efficacy. Hopefully, the worldwide demand of Iplex will help drive down the extremely high cost of this drug. Our legislature, along with the FDA and the insurance companies need to work in concert to expidite and explore any and all ways possible to make this drug (and others like it) available, affordable, and covered by insurance. ALS affects everyone. And all that are affected are called "PALS". People with ALS. |
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Not long after his diagnosis, Kirt began his own crusade to raise money and awareness called, Kirt's Krusaders, organizing and participating in 5-K walks in the Atlanta, Ga. area. Every year in October or November you can count on seeing this great show of support and love, and always hope... "After I was diagnosed in November 2003, Terri and I decided we wanted to get involved in some way. At our first clinic visit at Emory, we met Linda with the ALS Association. After talking with her for a while, we decided the best way to get involved was to join them in their annual “Walk to Defeat ALS”. This is their main fundraising event each year. This year the event raised over $625,000.00. All of the funds raised provide support for PALS and their families. We walk with the ALS Association of GA (ALSAGA) every November. Our team name is Kirt’s Krusaders and the funds we raise go to ALSAGA to help patients with ALS in GA with equipment and services they need. In the past 5 years Kirt’s Krusaders has raised nearly $50,000.00. We’re usually ranked in the top 10 out of 200+ teams in fundraising. This year we were 11th. We’ve been the team with the most walkers 3 out of 5 years." - Kirt Beasley The appeal is to the powers that be. The drug companies, the FDA, the insurance companies, right down to the doctors especially. You doctors have a moral obligation to explore and exhaust any and all reasonable avenues of treating PALS. Finally, with the drug Iplex being available again, take out your pens and fill out the IND forms and get your patients enrolled in the "Compassionate Use" program. This isn't about YOU, it's about your patients! If you are a doctor that is not "sold" on the trial results of other GH1 drugs and are using that info to compare to Iplex, (who's only trial is in Italy and the results aren't even made public yet), then you need to hang up your stethoscope and go flip burgers somewhere. You are doing a disservice to your patients if you are more concerned about "what the board will think". You doctors get paid top dollar to provide medical care coupled with the latest technologies. Iplex is the latest technicological drug available to you, so what the hell is the hold up? The FDA has already agreed to provide the drug under the "Compassionate Use" program. Instead of worrying about what the board thinks, you better start worrying about the many families and friends of PALS that you'll have to answer to. I am working on getting copies of the actual argument submitted in court when the Italian health organization sued to keep Iplex available to their patients. If the argument was compelling enough to win the right to continue using Iplex in Italy, sure as hell that same argument and proof of efficacy therein would be enough to finally pursuade the powers that be here in the states!!! Maybe the best and most expiditous way to obtain Iplex is to file a class action suit. The necessary case law already exists.
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I broke away for a couple of days and drove up to Canton, Georgia. I got to see my "buuuuuuuuuuuudy" and his precious family. We had fun just hanging out around their beautiful home, playing with their dog "Leo", acting silly, and just catching up. Kirt and I are really a comedy act in real life. The stuff we come up with off the top of our heads is just straight out goofy-funny. We made a recording of about 20 different answering machine outgoing messages one weekend and I somehow never lost the tape. Before I drove up to see him, I burned it on a cd and mailed it to him. Not long after I got there, we were listening to it and laughing our asses off.... "Terri", there should be an award for all that you have done, and continue to do. A hero for sure... Thanks for taking care of my buddy... |
