Tuesday, May 7, 2013

Letter to Editor of Idaho Press Tribune

Long time no blog...  everything is pretty much the same and I really need to update, but as of today, I decided to write because of an article in our local newspaper the Idaho Press Tribune.  I decided to write a letter to the Editor.  Here is the letter, I hope no one finds it offensive.  It is not meant to be at all.

Have a great day...  A&J's Mom

Dear Editor,

I was happy and sad all at the same time when I opened the paper this morning.  I loved seeing an article on arthritis, since May is National Arthritis Awareness month, along with 15 other observances.  I was however disheartened to see it right next to a giant pink ribbon for breast cancer awareness, which is usually addressed in October.  It had some very helpful information though.

When I read the article written by Dr. Shevlin, I thought there were so many WONDERFUL aspects to it.  There was one area in particular that was missing.  Juvenile Idiopathic Arthritis (JIA).  There are currently 300,000 children in the United States, that have the autoimmune form of arthritis, that in adults is called RA (Rheumatoid Arthritis).  Very few people know that children can have arthritis, unless it affects their family in some way, whether it be a relative or a child of their own. 

Did you know that Idaho is one of 11 states that does NOT have a Pediatric Rheumatologist? There are 6 states, that are underserved.  We, here in Idaho, do have adult rheumatologist who will treat children, but the treatment is different and more aggressive for children than it is adults.
Did you know that the same drug to treat breast cancer is used in many patients with RA, and JIA.  This same medication is used to treat some forms of Leukemia.  The difference is that RA and JIA can go into remission, but it is always there, lurking, waiting to resurface.  Many of the medications used to treat kids with JIA, have black box warnings, and have not been approved to treat children, so parents have to choose,whether to treat, or not treat our children for this crippling disease.   Not only does it destroy the joints, but it causes, along with medication, organ failure and blindness.  When people think of achy joints, they don't think of the awfulness that is actually JIA.  It does kill, blind and cripple children every single year. 

There are currently less than 250 pediatric Rheumatologist nation wide, Which means that every single Pediatric Rheumatologist would have to see approximately 1,200 patients, every 3 months, there would be no room for emergency visit.  (see the following link from the Arthritis Foundation) 

Here are the states with NO pediatric Rheumy's  along with the number of patients that need to be seen
Alaska- 800 Idaho- 1,500 Montana- 900 Wyoming- 500 North Dakota, 600
Nevada- 2,300 South Dakota- 800 Oklahoma- 3,500 West Virginia- 1,600
New Hampshire- 1,200 Maine- 1,100

As the numbers show there are approximately 15,000 pediatric patients NOT being served by a Pediatric Rheumatologist.    Now, lets look at the underserved, these are the states that have only one pediatric rheumatologist.
Vermont- 600 Arkansas- 2,700 Louisiana- 4,800 Mississippi- 3,100 Nebraska- 1,800
New Mexico- 2,000
With all of the previous information in mind, that more than 300,000 children have JIA, and there are only roughly 250 Pediatric Rheumatologists in the entire United States, that leaves approximately 30,000 patients being under served.  Keeping in mind that earlier, it was decided that a Pediatric Rheumatologist would have to see 1,200 patients,  by having zero pediatric rheumatologist, leaves nearly 15,000 patients without treatment or having to drive to other states for treatment.  In the six states that have only one Pediatric Rheumatologist, it leaves those doctors ALL six of them seeing 15,000 patients which is roughly 2,500 patients per doctor, not including children newly diagnosed.  This leaves the other 244 Pediatric Rheumatologist with roughly 270,000 and one doctor to see 1,100 patients still!

Please consider writing an article on this, or publish this information.  I am the mom of five, two of my children have JIA, we drive to Salt Lake City every four weeks to see our Pediatric Rheumatologist.  It is a 6 hour drive.  We go because of the lack of Pediatric Rheumatologist here in Idaho. They are only two of the 300,000 here in the USA, but they are mine.  Please help us and the other 300,000 children an families bring awareness to this debilitating disease.

Thank you so much for listening.