Post 57- Another Post, in Less Than A Week - How Come?

I usually try to spread out these posts to once a month; and honestly, there are months when I really have to work at coming up with a topic of interest. Occasionally the opposite is true; once in a while I come across several stories or personal happenings when I have the pleasant task of picking what to include now and what to put off until a later post. Recently, however, I became aware of something that not only deserved its own post, but warranted my very first letter of support directed at a congressperson – actually several.

I’ve mentioned a number of times in this blog about a support group I belong to that contains much valuable information and news about upcoming drug tests or recent pharmaceutical releases(shydrager@yahoogroups.com). As long as I’ve  belonged to this user group I read about the use of a drug called Droxidopa, which the Japanese have used  for years to safely treat neurogenic orthostatic hypotension (NOH).  Since just about all MSA patients suffer from NOH (a significant drop in low blood pressure upon standing; causing light-headedness and risk of fainting), it seems that the rapid approval of Droxidopa by the FDA is a “no-brainer.” Instead, the FDA has been demanding more tests before approval, despite years of successful usage in Japan, a country with rigid pharmaceutical controls. Chelsea Pharmaceuticals, the U.S. company hoping to bring this drug to our market has established an action group called the Treat NOH Now Coalition to encourage rapid action to evaluate Droxidopa.  The Coalition’s web site www.treatnohnow.com contains a thorough explanation of their goals as well as a complete definition of the problem and a place to compose and send off an email letter of support.   

Enclosed below is a copy of the email message I recently sent off in support of the Coaliton (my premier letter to legislators).  You may wish to use it as a guide if you plan to email one.  Thank you for taking the time to learn about NOH.

"My name is Steve Steidel, I live in Punta Gorda FL and I’m a retired police officer from Suffolk County, NY. I’ve been diagnosed with a rare neurological disease called Multiple Systems Atrophy (MSA) which has been described as a ‘”fast-moving” Parkinson Disease.  On average, a person with MSA survives 8 years after diagnosis (my diagnosis was made in 2009 so time runs short). I, like most MSA patients, suffer from neurogenic orthostatic hypotension (NOH) which causes us to experience symptoms of dizziness, lightheadedness and/or fainting when we sit or stand up. For many with NOH, including me, these symptoms are persistent and interfere with our everyday activities.

I am bothering you today because the only U.S. Food and Drug Administration (FDA) approved treatment at this time is Midodrine; however, this agent is not yet proven to affect symptoms associated with the disorder and it causes a range of undesired side effects. Midodrine faces FDA withdrawal from the U.S. market if it does not demonstrate symptomatic benefit with its two ongoing studies by 2014. That’s why new treatment options need to be made available now.

Therefore, this letter’s objective, while it may be somewhat self-serving, asks you to fulfill your role as a member of Congress by urging the FDA to accelerate review of NOH treatments and support the goals of the Treat NOH Coalition who seeks to advance the development and approval of treatments for NOH.  These goals of the Coalition are spelled out ohttp://www.treatnohnow.com

Thank you for your time and attention to this correspondence:"