On Martin Luther King’s Birthday: The Civil Rights of the Medical World

on Monday, January 16, 2012. Posted in Blog

Wayne Brown
AcromegalyCommunity.com

While he is most famous for his civil rights work on race, Dr. Martin Luther King, Jr. knew that issues of health were essential for all citizens; because you need your health to protect all of your other rights.

Now I am not a Dr. King scholar, but with his birthday celebration today, I was looking for a deep and meaningful quote of his when I came across one I had never heard before.  In 1966 Dr. King stated that “of all the forms of inequality, injustice in health care is the most shocking and inhumane.”  Nearly half-a-century later, the world is no closer to equality in healthcare.  While the USA gets the most attention for this, we are not alone in the disproportionate availability of quality healthcare for our poorest citizens.  When I was in college, I worked in a small motel across the street from an MRI company, and 20 minutes from the Canadian border.  While MRIs are free up there, sometimes the wait can be daunting.  Other countries with nationalized healthcare will not cover any diseases not recognized as an officially covered disease of their country.  Every system has its benefits and its drawback- that don’t necessarily apply to the moneyed class.

Now while healthcare is still in need of major overhaul, there is something more reasonable you and I can do to neaten our little corner of the world, even if we cant fix everything.  Remember, Dr. King understood that some changes need to be incremental.

In the past several years, there has been a tremendous insurgence in the number of patient advocacy groups.  These are groups, most often founded by patients or their immediate loved ones; most frequently created out of necessity because they have been touched by a medical diagnosis, and when they went looking for support, none was to be found; so they went out and created it.  As Dr. King also said, “change does not roll in on the wheels of inevitability, but comes through continuous struggle. And so we must straighten our backs and work for our freedom.”  If you are dealing with medical issues, every other issue in your life feels magnified.  Trying to go it alone can be a near impossibility.

Of course, support groups are not for everybody.  Some people have a medical condition, and they don’t want to talk about it with anyone- not friends or family, heck, not even their medical professionals.  But there are a lot of people who do like having support, and mutual understanding.  This is especially important for patients dealing with rare or orphan diseases.  In the United States, an orphan disease is one that is diagnosed in 200,000 or fewer patients.  According to the National Institute of Health, there are currently about 7,000 rare diseases in the United States.  Several do have support groups, but many do not.

If you are a patient or loved one struggling with a rare disease, talk with your doctor.  Tell him or her that you need support.  Medication is important, but never underestimate the medicinal value of “me too.”  If your doctor is unable or unwilling to help you, there are ways to find a group for yourself:

Supporting patients and loved ones with rare diseases is not complicated.  Listen and respond appropriately.  Most patients are looking for a sympathetic ear, not a know-it-all.  If there are enough people in your area, set a date to meet.  That can be a lot of fun, and far more cathartic than you even realize today.  But if you are all spread out, don’t get discouraged; just use the online world to meet.

I created a patient support and advocacy group about eight years ago for a rare disease known as Acromegaly, and today we have members around the world!  While it is difficult to host local events, we have great online support, phone conferences on a regular basis, and even a huge international weekend once a year- just to name a few things we do.  Our next steps will bring us far closer to each other- in a virtual way, even if it can’t be in a physical way.

If you are struggling with your medical universe, you are not alone.  Remember, as Dr. King said, change comes through continuous struggle.  If you can assemble a group of like-minded people, the struggle may not get easier, but at least you will have company to help carry the load.

 

Wayne Brown is the founder of Acromegaly Community; a group focused on patient advocacy, and was the lead writer for the collaborative book Alone in My Universe: Struggling with an Orphan Disease in an Unsympathetic World.  He can be reached at  This e-mail address is being protected from spambots. You need JavaScript enabled to view it

 

 

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Comments (1)

  • Amanda
    Amanda
    14 February 2012 at 00:05 |

    Thanks Wayne!

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