By Maya Miserlian
My name is Maya Miserlian, I’m 15 years old, and I am one of 300,000 children in the US with juvenile arthritis (JA).
At the age of 11 I was diagnosed with Chronic Recurrent Multifocal Osteomyelitis (CRMO), a rare bone disease that is one of the many diseases included in the definition of arthritis umbrella. My diagnosis came after over a year of being told my aching bones were just ‘growing pains’. CRMO affects one in every million people, which has left me feeling alone in the past, because I did not know anyone else with my diagnosis. In the past year I was introduced to the Arthritis Foundation, which has played a big role in my journey with CRMO. I advocate for arthritis as a Junior Ambassador for the Foundation, which has allowed me to take control of my disease and advocate for myself and others with JA. I consider myself lucky – because I live near my specialist and was able to get on medication that works, I reached remission only three years after my diagnosis. However, easy access to a specialist is not a reality for most people.
There are 300,000 children in the United State with juvenile arthritis, but there are less than 350 board certified, practicing pediatric rheumatologists. That’s only one doctor for every 900 kids. Due to this shortage, there are 8 states with no practicing board certified pediatric rheumatologists, and 5 states with only one. Only 25% of children with arthritis can access the care and treatment that they need. A lack of treatment can lead to worsened symptoms, which is very painful and heartbreaking for patients and their families. Many children must travel hundreds of miles, simply to see a specialist for their disease. Even those who are fortunate enough to have doctors close by often have to wait months to be seen.
Luckily, there is a bill being considered in Congress that is pushing to address this shortage. The Ensuring Children’s Access to Specialty Care Act (S. 989/H.R. 3767), would make pediatric subspecialists eligible for the National Health Service Corps loan repayment program. Currently, pediatric subspecialties, such as pediatric rheumatologists, are not eligible to receive loan repayment from this program, which contributes to the severe shortage of doctors that can treat rare diseases, such as juvenile arthritis.
The Junior Ambassador Program is made up of passionate individuals, between the ages of 13-17, that participate in several activities to advocate for people with JA. As a part of the Junior Ambassador program, we receive bimonthly trainings and assignments that we can accomplish to raise awareness for JA. In May, our assignment was to petition signatures to our senators, asking them to support the Ensuring Children’s Access to Care Act. The Junior Ambassadors competed to see who could gather the most signatures during the petition activity. At the end of the challenge I collected nearly 600 signatures and won the competition! I sent them onto my senators, with the hope that the outpouring of support would encourage them to sign onto the bill.
Collecting signatures for this important legislation was an amazing experience! I felt very empowered to be able to spread awareness about this problem, while gaining support for the bill. Each time I requested a signature, I spoke about what the bill does, why it is important, and shared statistics about the issue, and helped teach people that kids get arthritis too.
The Arthritis Foundation has put together a pre-formatted letter with the important statistics and asks for your specific member of Congress—if they already support the bill, you’ll be able to send them a thank you note instead of an ask for sponsorship. You can modify the letter with your personal story to help your member of Congress understand that kids get arthritis too! It’s easy and takes five minutes or less to send your story to your elected officials, take action today!
- Become a Junior Ambassador
- Learn More About the Pediatric Rheumatology Shortage
- July Is JA Awareness Month – Share Your Story, Spread Awareness and Donate!