National Registries

I was asked to speak about the impact chronic pain has on a person, as well as the family and friends of the person in pain, and how a person can advocate for themselves in regard to their own medical care and for policies and practices that will benefit all people who live with pain.  I spoke to a group of mostly patients and parents and developed a new respect for the pain and other complications people with this disease can develop.

When I came home from the conference I sat down to write some notes about the event, how my presentation was received and what changes I should make to ensure that it is relevant and interesting.  I realized while doing this that although I knew how many people live with pain I had not really thought about the number of different ways that pain can be generated.  I am aware of the different types of pain—chronic, acute, surgical, and injury related, and the various pain sensations, such as sharp, throbbing, aching, burning, and any other type a person may feel.  What I had not spent much time thinking about were the causes of all this pain. Maybe I didn’t think it mattered, after all what was important was treating the pain.  Right?

But after Saturday I realized that the initial cause does matter.  Some diseases receive more media attention or are “more popular” illnesses and therefore receive more funding for research into causes, cures, and treatments. Others, for whatever reason, don’t attract that same attention so it is left to the patients and their families to raise awareness, and educate legislators and agency personnel about the impact this disease has on them and the need for increased research funding. 

One way to attract attention to an illness is to tell the general public how expansive and expensive it is.  A National Institutes of Health  (NIH) registry of people in the United States with a specific illness can not only give credible information about the number of people diagnosed with a certain disease but all it can identify patterns, whether geographic or genetic based. This kind of information will attract media attention, which then can be used to educate and enlighten those in the position to affect policy.

The National Multiple Sclerosis Association of America has identified the need for a National Registry for Multiple Sclerosis as one of the items on its Federal Legislative Agenda.  The current numbers being used have not been verified and can’t be used to show any patterns or trends.  The NIH needs increased funding to compile and manage this, or any other registry, for research into effective pain treatments, and for disease specific research.  It should not be a fight between illness organizations for medical research funding, we all need to work together to advocate for a substantial increase in overall funding to the NIH.  I urge everyone to become active and support legislation for any of these important items.