by Anna Hyde, Vice President of Advocacy and Access, Arthritis Foundation and Board Member, Coalition for Health Funding
Did you know that kids get arthritis too? I didn’t either. Not until I started working for the Arthritis Foundation five years ago and learned that kids can be diagnosed with arthritis as early as infancy, and it can be devastating for them and their families. I’ve been fortunate to meet and interact with many families impacted by juvenile arthritis, and I’ve come to learn how serious this disease, and how unique the health care needs are of children diagnosed with it.
July is Juvenile Arthritis Awareness Month, so I invite you to keep reading and learn about this disease through their eyes. The quick facts are that it affects 300,000 children in the United States, and while there are different types, almost all are autoimmune, meaning they affect the immune and organ systems, and can lead to co-morbidities like uveitis that can cause blindness. There are only 350 board certified pediatric rheumatologists in the United States; in fact, many families have had to move states or travel incredibly long distances just to see a pediatric rheumatologist. Perhaps most importantly, there is no cure.
Bottom line: Juvenile arthritis is a serious disease that can be life-threatening, and has an enormous physical, emotional, and financial impact for entire families affected by it.
But the real impact is best shared by these children themselves:
· Eleanor from North Carolina, age 16: “I struggled a lot, especially in the beginning. It took me about 6 months to get a diagnosis, because every doctor thought it was just an injury. They thought that I had torn my ACL or something like that. I even had a doctor say that I probably had sepsis before I was even referred to a pediatric rheumatologist.”
· Samantha from Tennessee, age 16: “Even though I’m in remission, I’m left with lifelong joint damage. I went misdiagnosed for over 3 years, and because of this, my jaw has become severely deformed, causing me to have difficulty eating, speaking, and even breathing.”
· Sydney from Alabama, age 16: “I struggle to keep up with other people my age physically. I can’t stand as long, walk as fast or as long as they can. In the past, some of my teachers didn’t understand, no matter how many notes my parents or doctors wrote.”
· Lorenzo of New York, age 16: “When my arthritis is bad, it’s difficult to do a lot of daily things. My parents have had to dress me – no 16 year old should have to go through that. Before taking my medicine, I’d missed months of school because I couldn’t walk or move around. I was wheelchair-bound for all of 9th grade, but now I use a cane daily and my wheelchair as needed.”
And then there are the devastating stories of children who have cycled through all the medications currently available and don’t know what to do next. They feel they have no choice but to let their health deteriorate while they wait for new drugs to be developed.
I can tell you first-hand that these children and their families are incredibly tenacious, strong, and persistent in their search for a cure. This month, we will convene our first juvenile arthritis Conference of the year in Houston, where kids will connect with kids, parents will connect with parents, and our advocacy team will help them find their voices and learn how to advocate before their elected officials. Because there is no cure and these heavy-duty drugs can have heavy-duty side effects, investment in our public health system is critical for these kids. Here are some of the essential ways public health is vital for these families:
· Research at the National Institutes of Health is critical for helping identify the causes of JA, which can help lead to early diagnosis, and ultimately to finding a cure.
· Workforce programs funded by the Health Resources and Services Administration (HRSA) help train providers and place them in underserved areas; With 10 states that have no pediatric rheumatologist and five states have only one, a stronger investment in HRSA can help connect children to providers closer to home.
· The Centers for Disease Control and Prevention (CDC) collects data on arthritis prevalence and impact, which is vital to understanding the impact of the disease and where to place resources. The CDC Arthritis Program also helps connect people with arthritis to evidence-based self-management programs.
And that barely scratches the surface. There are also the many issues that impact kids with arthritis that you wouldn’t normally think about, like vaccine distribution. Kids with arthritis have compromised immune systems and many rely on herd immunity to stay free of diseases that vaccines protect against.
Now that you have a better understanding of what arthritis is like in children and why the public health system is so important to meeting their needs, I hope you will join me in recognizing Juvenile Arthritis Awareness Month. Connect with us on social media through #AdvocateforArthritis. Let your Members of Congress know a public health investment for children is essential. And visit the Arthritis Foundation’s blog to keep reading about the amazing children like Maya Miserlian that we interact with every day.