Does advocacy make a difference for those suffering from multiple system atrophy? You bet it does and the more people that participate the better.
When you suffer from a rare, little known disease like multiple system atrophy it is easy to feel isolated and alone. Often it can take years for a proper diagnosis and to get a name for the disease that caused so many problems. Under such circumstances it is easy to think only you, family, and friends are the only people in the world who know or care. How can so few people make a difference, you might wonder.
Well, first of all, its important to know you are not alone and there are resources available to connect with other affected by multiple system atrophy. Secondly, its important to know that even a small group of people can make a difference.
Just last month, The MSA Coalition®, a few other advocacy group leaders, two caring physicians, and about a dozen patients suffering from neurogenic orthostatic hypotension (neurogenic OH) made a big impact on an important decision by the FDA. On January 14 the FDA Cardiovascular and Renal Advisory Committee held an open public hearing to make a recommendation for or against approval of droxidopa, a new treatment for neurogenic OH. Neurogenic OH affects about 80% of all multiple system atrophy patients; but, there was only one FDA approved drug to treat it and many patients don’t benefit from it for various reasons. At the end of the hearing the committee voted and recommended approval, 16-1. During the committee comments after the vote, members made it very clear that the patient testimony played an important role in their vote. Thanks to advocacy by a small group of patients the 80% of MSA patients currently suffering from neurogenic OH will soon have a new treatment choice.
As we approach the beginning of Multiple System Atrophy Awareness Month this March there will be a number of opportunities to get involved. Whether it is as simple as “liking” or “sharing” a post on Facebook, writing a letter to Congress, or hosting your own MSA Awareness event, do your best to get involved. A very small group of 18 people made a big difference on January 14. Imagine what several thousand MSA advocates could accomplish if we unite as one loud voice!