Educate Yourself
Of the billions of dollars spent on medical research each year, few if any patient treatments emerge. From the time a scientist has an idea for a relevant experiment, it could be as long as 40 years before a treatment is available. As unimaginable as this seems, it is true.
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Why do we allow ourselves the added stress of thinking that one day that perfect ALS pill will be rolled out on stage for it's scientific debut. On and on the story goes and this horror movie never ends. Each year new therapies invade the U.S. from a country that lacks modern medical requirements. Some documentation of a promising trial, and it's all the buzz, from bloggers to chat rooms evolving once again into the hopes of ALS patients.
The ALS community and those groups raising money for research need to look seriously at the rate of return through the years. We have been relying on drug companies to find the magic drug but it has turned into a fairy tale using pixie dust while fighting a losing battle with the FDA. Is anyone truly looking at ALS or only reviewing possible profits on a spreadsheet? We are indeed ready for real 21st century science and the timing is perfect to get stem cell research hashed out in those blogs and chat channels.
The stem cell debate is a legitimate discussion for our nation. This debate has lacked clarity over the years on valuing viable life over shelved cells. Will anyone win the debate on stem cell research? The time has come for us to stop pretending research is opening doors while the debate keys are being held captive by fear. This debate brings hope and promise to medical research and needs to be reshaped into something that Americans can understand. We don't debate the morality of transplanting organs from the bodies of the deceased who have donated organs. Opponents need to specify the reality that the lives of people coping with life threatening diseases also have a voice as well as a medical theory of hope.
In America alone, medical costs exceed $2.3 trillion in 2007, more than all federal income tax receipts, $1.8 trillion and three fourths of all medical costs are directly due to chronic incurable disease. Who do you think helped create these costs and how do we turn it around?
We just had a speaker come into our office for our staff meeting who was diagnosed with ALS. Her name is Anne Marie and her story was so inspiring. This is the article about what she does and how she's come to live with ALS: http://bit.ly/a9pPvb. She's a motivational speaker and it would be great to pass her story on as I know she is one of many people diagnosed with this disease.
The Department of Veteran Affairs (VA) has come a long way in terms of medical services, benefits and compensation for Veterans with Amyotrophic Lateral Sclerosis (ALS) – better known as Lou Gehrig’s Disease - since I was diagnosed with what has been known as a death sentence in June of 2009.
Despite all the good news, there are still major challenges for Veterans with ALS within the VA in terms of medical care and treatment. Medical care of Veterans with ALS currently varies widely by VA hospital and region. Some are sent to fee based fully accredited multi-disciplined ALS Clinics. Some are seen in Spinal Cord Injury Units or ad hoc multi-discipline ALS clinics within VA hospitals. Some are being seen through general care in spite of the recognized best practice of sending ALS patients to multi-discipline ALS clinics.
Some 1,400 of the 3,600 Veterans with ALS that received care from the VA hospitals during the past four fiscal years (FYs) died because there is no effective treatment or cure – yet. That equates to a rate of approximately one ALS related veteran death per day. According to VA’S Office of Research and Development (ORD) the proactive integration of emerging ALS treatments that could extend or save lives is essentially up to the Veteran not the VA.
I was told ORD did not have a means to track all progress by industry, and that it was up to the individual to pursue such therapies when it is still in the clinical trial phase, and that it is up to the industry sponsor to contact the VA if they want to include the VA as part of their trials.
Right now, today, there are several drugs and two stem cell treatments in Clinic Trials for the treatment of ALS that are proving safe and effective in Phase I, Phase II, or early Phase III Human Clinical Trials, and that the FDA could work with the developers to pursue early approval or a large group expanded access program for any or all of them.
What I don’t understand is why the VA is sitting back and waiting when it could be actively working with the FDA and drug/treatment developers to find a treatment or cure for ALS. I don’t understand why the VA isn’t actively pursuing partnerships with drug/treatment developers that could lead to accelerated approval or an expanded access program that could start saving Veteran’s with ALS lives later this year rather than five or six years from now.
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