Today is the big day.
We are off to Washington D.C. We are leaving a few days early so that we can drive from our home in the Midwest to our nation’s capital. Yes- this will be a “fun” trip, we will stop and see a friend (or two) along the way, and try to take in a sight or two. We will catch up with old friends at the Summit, and my boys will have another chance to meet up with kids who are just like them, but that is not why we are going.
We go to advocate, and this is why:
“Pediatric rheumatic diseases, often broadly categorized as juvenile arthritis, are a family of autoimmune diseases characterized by severe inflammation and pain that can occur in any part of the body. These diseases can be extremely debilitating and in some cases fatal.
A 2007 CDC study estimates that 294,000 U.S. children (1 in 250) have been diagnosed with arthritis or another rheumatologic condition. These findings establish that pediatric rheumatic diseases are more prevalent than many other chronic childhood diseases. In fact, rheumatic diseases affect more children than juvenile diabetes, cystic fibrosis, and muscular dystrophy combined.
Despite this statistic, pediatric rheumatic diseases receive far less research funding, both at the federal level and through private philanthropy, than many other diseases with far less prevalence. Best estimates place the annual total of private funding in the U.S. at around $2 million. The following table puts that figure into perspective, comparing the annual private funding of several common pediatric diseases.
Disease Prevalence——- ——————Private Funding (Annual)
Leukemia 1 in 25,000———————- -$270m
Juvenile Diabetes 1 in 500—————— $198m
Muscular Dystrophy 1 in 10,000 ———–$157m
Cystic Fibrosis 1 in 2,500——————— $126m
Pediatric Rheumatic Diseases 1 in 250 ——$2m”
* courtesy of the Juvenile Arthritis Association
Staggering, isn’t it? To make matters even worse, there are less than 300 board certified pediatric rheumatologists to treat these children.
This is why we advocate.
We will meet with other advocates from across the country, and convene on Capital Hill. We will tell our congressmen what we are advocating for, and why it is so important. These are our three initiatives this year:
1) To make medications more affordable- biologics to treat forms of autoimmune arthritis (like JA) can cost patients THOUSANDS of dollars in out of pocket expenses, every single month.
2)To support arthritis research- We need a cure!
3) To increase the number of pediatric rheumatologists- because 300 doctors for 300,000 children is not enough.
This is why we advocate. This is why we travel to Washington D.C.
You can help too. Become an E-Advocate or an Arthritis Ambassador, and let YOUR congressman know (from the comfort of your own home) that these issues are important to you as well. Attend the virtual summit to learn more, and don’t forget to check back here for updates live from the 2014 Advocacy Summit!