Andy is ready for his big speech on Capitol Hill!
Today is World Arthritis Day.
I wouldn’t say it is a time to celebrate inflammation, but it is definitely a time to bring awareness to this disease that many think only affects the elderly. And I’m not just talking about raising awareness for the 300,000 children in the United States who have arthritis. I’m also talking about the burden on families when treating these children accurately without delay in treatment.
But that’s so difficult to do when there are so few pediatric rheumatologists to see these kids. Some states do not have one of these specialized doctors – NOT ONE.
So when Andy was asked by the National Psoriasis Foundation to be a panelist at a Congressional briefing regarding the shortage of pediatric rheumatologists, he jumped at the chance to share his story.
On Oct. 6, while dressed in his suit and tie, Andy arrived on Capitol Hill to meet with legislative staff members. He was one of four panelists at the briefing, which was hosted by the American College of Rheumatology in conjunction with NPF and the Arthritis Foundation. Panelists included Dr. Will Harver, Dr. Michael Henrickson, and Joy Ross, a patient who went blind as a result of her juvenile arthritis that she’s had since age 3. She is now a mom to two daughters who also have arthritis.
NPF President & CEO Randy Beranek attended some of our meetings and the briefing on Capitol Hill. (Photo courtesy of NPF.)
In front of a packed room of about 100 people, while in the spotlight of a photographer and videographer, Andy told his story about how he was diagnosed at age 4 with psoriasis and age 5 with juvenile psoriatic arthritis. He told how he was lucky to live in a state with more than four pediatric rheumatologists, but even some of his friends needed to travel hours to see one because the doctors are clustered around big cities. He told how missing a year of proper treatment probably led to deformities in his hands.
But most importantly, he explained how this doesn’t have to be the norm. Congress can help by supporting policies that will increase the number of pediatric rheumatologists across the country and allow their patients access to treatments they need to keep inflammation and irreversible damage low. Congress is urged to support HR 1859, the Ensuring Children’s Access to Specialty Care Act and HR 1600 Patients' Access to Treatment Act.
Perhaps I’m a little biased, but I think Andy did an excellent job completing his first task as an NPF youth ambassador. We hope he has another chance to visit policy makers and tell his story.
Oh, and I can’t forget to mention the meetings Andy and I had before and after the briefing last week. We thank the following staff members for their time and generosity in listening to our stories and learning about psoriasis, juvenile arthritis, and how it affects our daily life.
Anna Lake Leiertiz, legislative director for Congressman Dave Trott from Michigan
Hannah Murphy, legislative assistant for Congresswoman Anna G. Eshoo from California. Rep. Eshoo is a great champion for arthritis patients. Thank you for your continued support!
Margie Almanza, legislative director for Congressman David McKinley from West Virginia. Rep. McKinley is also a true champion for arthritis patients. We wholeheartedly thank you for your support!
To read more on Andy’s visit to Capitol Hill and the briefing, please read NPF’s blog and the Arthritis Foundation’s blog.
If you’re inspired by Andy’s story, please sign up to be an NPF advocate or an Arthritis Foundation advocate. Better yet, do both! Whether you’re old or young, your voice does make a difference. And don’t forget to #Act4Arthritis!
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Below is Andy's original Congressional briefing speech. He did get a little nervous and skipped some of his story, but he still got his point across loud and clear. So proud of this kid!
Good afternoon. Thank you for this opportunity to speak today. My name is Andrew Moy. I’m 17 years old and live in Waterford, Michigan.
In many ways, I’m a typical teenager. I am a senior in high school. I’m on the yearbook staff and the robotics team. I like to go to concerts with my dad and hang out with my friends.
But I differ from many at my school because I have juvenile psoriatic arthritis.
I’ve had pain and stiffness in my joints for as long as I can remember. As a baby, I never crawled. As a toddler, my knees would buckle and I’d fall to the ground in pain. In kindergarten, when I lagged far behind my peers in physical exercises, my gym teacher called my mom to express concern.
At this time, I already had a diagnosis of psoriasis, a disease that causes red, raised patches of skin that are painful and very itchy. My psoriasis covered me from head to toe and no medicines were working to control the disease.
Because arthritis is seen in approximately 30% of patients with psoriasis, I received a referral to a pediatric rheumatologist.
But it wasn’t easy getting an appointment. The waiting list to see a pediatric rheumatologist was 6 months. And, when I did see the doctor, she told me to just take Motrin and I would be fine and to call if my symptoms got worse. She didn’t see the severity of my disease because she was overwhelmed with other patients and couldn’t find the time to fully assess and order tests needed to confirm the arthritis.
After a year of taking Motrin, I was seen by another pediatric rheumatologist who was able to get me on the right track of medicine and therapy. But, after living with uncontrolled juvenile psoriatic arthritis for this long, joint damage had already occurred. Today, my hands are deformed, my hip is fused where it shouldn’t be, and I even have trouble with my jaw, making it hard to eat, speak and even smile when I have an arthritis flare.
Everyday life can be difficult for me. Some mornings I can’t get out of bed without the help of my mom. My knuckles hurt and my hands swell after only a few minutes of writing. I have to take medicines that make my stomach hurt and I receive weekly injections that feel like hot pokers in my body. Some days I get pushed in a wheelchair because I can’t even walk.
I’ve been on at least 15 different medicines to control the psoriasis and arthritis. Many of the medicines worked, but only for a short time because they lost their effectiveness. I’ve even tried some twice because I ran out of options when there was nothing else left to try.
My story is not unique. Many Americans, including children, see these set backs in their lives, too.
My friend travels long hours each way for her doctor visits. And she lives in Michigan where we are fortunate enough to have three great children’s hospitals with pediatric rheumatologists, but unfortunate because they are located close together and far away from her.
Many kids in America don’t receive a diagnosis for years because there isn’t a single pediatric rheumatologist in their states. With approximately 300,000 children in the US with arthritis and only a handful of doctors to see them, you can see why some kids have to wait 6 months or much longer to get a diagnosis.
And waiting to see a specialist keeps a child in pain and inflammation high. Uncontrolled inflammation can lead to irreversible joint damage, like it did for me.
Even though arthritis is the nation’s number one cause of disability, there is hope for a better quality of life. But we need your help.
Please support funding that will increase the number of pediatric rheumatologists across the country. Better access to specialists will allow for quicker diagnosis and a quicker path to the best treatments available. Early diagnoses and treatment is crucial to a better outcome for patients with juvenile arthritis.
Thank you.
