Recently, I was talking to a friend of mine about writing for Health Central and the topic of how many people have MS in the United States came up. The best I could answer was that the National MS Society (NMSS) estimates that there are 400,000 Americans who live with multiple sclerosis.
"It seems that everybody knows somebody with MS," she said.
"That number must be low."
I’ve often thought the very same thing.
With the increasingly sophisticated tools used to diagnose patients and with the improved long-term outcomes derived from the disease-modifying treatments, it makes sense that neurologists would diagnose MS earlier in the course of the disease.
But what about that 400,000 number?
I was curious. So I visited the websites of each and every chapter of the National MS Society and looked for the estimated number of patients in their district. Then I created a spreadsheet and plugged in the numbers.
Although some of the chapters did not specify an approximate number of patients served in their area, the total I reached in my non-scientific exercise exceeded 500,000.
500,000 and not all patients were counted.
Does it matter what the number is? According to Congress, it does and then some.
In April, Congressmen Michael C. Burgess, M.D. (R-Texas) and Russ Carnahan (D-Missouri) introduced bi-partisan legislation to create a national registry to house information about Americans living with multiple sclerosis. According to the press announcement, a national registry would allow for future planning of health care needs, detect changes in health practices, assess disease burden, promote advocacy, and support a wide range of research initiatives.
"By creating a national registry health care providers will be able to better serve those living with MS and improve research to combat this disease," said Congressman Russ Carnahan. "Currently valuable time and effort is being wasted because smaller databases aren"�t able to communicate with one another. This is a simple and common-sense solution, but the benefits are enormous."
The most recent national study of multiple sclerosis incidence and prevalence in the United States was conducted in 1975. That’s an enormous 33 years ago and the needs of the MS population have changed dramatically since.
If enacted, H.R.5874 would provide for the establishment of a permanent Multiple Sclerosis National Surveillance System through the CDC in consultation with "a national voluntary health organization" (ie. the National MS Society). H.R.5874 would also authorize the appropriations of $5,000,000 each year for five years beginning in 2009.
The text of H.R.5874 can be read here.
Lisa Emrich is a patient advocate, accomplished speaker, author of the award-winning blog Brass and Ivory: Life with MS and RA, and founder of the Carnival of MS Bloggers. Lisa uses her experience to educate patients, raise disease awareness, encourage self-advocacy, and support patient-centered research. Lisa frequently works with non-profit organizations and has brought the patient voice to health care conferences and meetings worldwide. Follow Lisa on Facebook, Twitter, and Pinterest.