The FDA has been repeatedly approached by members to issue a Medwatch for the use of epidural steroid injections based on the manufacturer's warnings of adverse events. It should be noted that FDA serves as the consumer watchdog for unsafe practices associated with medications and medical devices. Directed at health care providers, a MedWatch WARN notice would work in the gaps to warn both health care providers and consumers of the potential for injury. Even in the face of mounting evidence, FDA is taking the position that at this time, broad action is unnecessary, until evidence is gathered of the need for communicating with the public. FDA believes that evidence should be gathered through patient reports, physician reports, research studies, and manufacturer reports. This correspondence documents the current status of the conversation. The first letter Co Wrtten By Terri Anderson from ASAP, And Dennis Capalongo from EDNC can be found here. The response from the FDA can be found here. ASAP will update this process as it unfolds. Be shure to check back as this is a on going process.
Asap has had a great respone to the Poll we started last year.. we are still collecting the data and hope to have the results to you soon. However we still need people with Arachnoiditis to take the short poll. The more data we have the better we can serve Arachnoiditis Victims.. The Poll can be found here.
We are a Grass roots society of victims of Arachnoiditis. Our focus is to educate the general public as well as health care professionals and government officials about Arachnoiditis. We strive to find ways to prevent future cases of arachnoiditis, and to provide support to those that have been the unfortunate victims of this cruel disease. Our goals include:
* To work with legislators and leaders of the healthcare industry to ensure that, prior to any invasive spinal procedure, patients receive comprehensive informed consent information, including the fact that arachnoiditis is a possible outcome. Only then can patients make truly informed decisions as to their treatment options;
* To shed light on, and to prevent, the all-too-common coercive pain management practices that require patients to receive invasive epidural steroid injections prior to receiving other forms of pain treatment;
* To liaise with members of the media and other thought-leaders to raise awareness of arachnoiditis;
* To raise capital for funding research into the condition and possible treatments.
We strive to draw ideas from the experiences and stories of arachnoiditis patients, and work diligently to put these ideas in motion. We strive to be a voice for arachnoiditis sufferers, many of whom are very, very sick and cannot speak for themselves. Most importantly we believe that the best CURE is PREVENTION! Please join us in our fight.