Mary Rose Purdue, a junior at Hopatcong High School, is one of the hundreds of thousands of children/young adults in the U.S. who suffers from juvenile arthritis. On March 4-6, Purdue travelled to Washington D.C. in an effort to share her story and learn more about this disease. The following is an interview between Arrow journalist, Molly Bond, and MaryRose Purdue.
MB: How did you get this opportunity?
MP: I got an email because I did a walk. Anyone who had juvenile arthritis—they contacted them and asked if they would be interested in doing it. I had to apply, and then I got a scholarship.
MB: What was the purpose of your visit? What exactly did you do?
MP: I went down to Washington, and they prepped me; I had to first learn about “The Asks.” There were three “Asks”; you had to go down and talk to the Senators and the Congressmen and ask them for three specific things. We asked for more pediatric rheumatologists, for osteoarthritis arthritis, and rheumatoid arthritis to be put on the DOD, which is a list of things that will get more research, and we asked to get certain medications put on a different tier because right now they are really expensive. People can’t get them, and they are in wheelchairs. They prepped us to be able to talk to the senators and try to convince them.
MB: Were you part of a group when you talked to them?
MP: It went by state. All 50 states were represented, so there were about 350 people there.
MB: How long did you guys speak for?
MP: We had the seminars for pretty much three days straight, but we only had fifteen minutes with each senator. We were supposed to speak to four people, but we only got to speak to two because of the snowstorm. So it was about thirty minutes.
MB: How was your overall experience?
MP: It was a lot of fun. It was good to talk to other people who have juvenile arthritis. I actually didn’t know that certain things that happen to me have to do with it. I thought that certain things were normal, but they said that it has to do with my arthritis.
MB: Did the Congressmen and Senators receive you well?
MP: Yeah, they were actually really nice. You’d be surprised how many of them were like… “Oh my sister has it; my uncle has it.” It was really cool.
MB: Did the Congressmen and Senators make any comments? Were they supportive?
MP: Yeah, not from my state, but we actually got support from Congressmen from two other states. There were two states that we were looking for people to support a specific bill that we were trying to get passed through Congress. A bill can’t get further unless we have two specific people behind it to push it forward, so we had to get them to sponsor it. We actually got people to say that they were willing to sponsor it.
MB: Were there a lot of kids there that had juvenile athritus really bad?
MP: Yeah, there’ are different levels. Some people will have it in one knuckle in their finger, others are in a wheelchairs, and some will be once a week injecting themselves in the leg with medication.
MB: Is there anything you would like to say about your experience?
MP: 1 in 250 kids have juvenile arthritis. With the amount of kids in our school, it’s not only me. I had no idea that there were that many people. Not everyone has it bad. Some kids will be in wheelchairs, some kids will be on really high doses of medication, and some kids will just have it in the tip of their thumb. It really just depends. There are not a lot of doctors for these kids to go to because you have to go to school 3 extra years to become a doctor for children, instead of a doctor for adults. They also get paid less. There’s this kid that I met, and he lives in Alaska. He has to fly to Seattle to see his doctor. I can’t imagine that. I thought it was crazy that I have to drive an hour and a half to see my doctor. In other states, people have to drive six hours to see their doctors. The most doctors in a state is about 5. I think Texas has about 3.