Wednesday, March 18, 2009

Arthritis Advocacy- GO Mikayla!!

Once again the importance of Arthritis Advocacy. Every voice can make a difference.

Mikayla's Testimony at the Congressional Hearing

March 18, 2009 testimony before the House Appropriations Committee, Subcommittee on Labor, Health and Human Services, and Education on behalf of the Arthritis Foundation

My name is Mikayla Minnig, and I live in Downey, California. I am here today on behalf of the nearly 300,000 kids like myself who have juvenile arthritis. I am 10 years old and in the 5th grade. I was diagnosed with pauciarticular juvenile rheumatoid arthritis when I was just 3 years old. Pauciarticular means it affects four or fewer joints and usually large joints. For me, it affects my left knee and ankle. I also am at high risk for eye inflammation and must have them checked often so I don’t become blind, which could happen. It all began when I felt a lot of pain and swelling in my neck. I couldn’t walk or run like the other kids, and I couldn’t turn my head.

For ten months I went to lots of different doctors to figure out what was wrong with me. Some of these doctors told my parents I must have bad growing pains or must be faking the pain and tears. Finally, we were sent to a pediatric rheumatologist—a doctor who treats kids like me with juvenile arthritis. Dr. Starr said I had arthritis. My parents were surprised. They didn’t know, like most people, that kids got arthritis. In fact, most people don’t know that juvenile arthritis is one of the most common childhood diseases in the United States.

People are surprised when I tell them that I have arthritis because I don’t look very different than other kids. But unlike other kids, I take a cancer drug every week plus daily medication to control my arthritis and it helps me try and lead a normal kid-life. I have met other kids through the Arthritis Foundation who are not as lucky as me. The drugs don’t work for them, and they end up in a wheelchair or have to have joints replaced. In fact, juvenile arthritis is the leading cause of disability in kids. I am also lucky to be able to see a doctor who understands and can treat my disease. Kids in 9 states don’t even have a single specialist to see them.

I am here today to ask Congress to focus more attention on kids like me with arthritis. Research is the key to a cure. Research has led to newer drugs that help kids stay out of wheelchairs, but these drugs can have really bad side effects. We need a cure! Right now, the government spends $9.8 million at N.I.H. for juvenile arthritis research. That sounds like a lot of money to me but when you think of the nearly 300,000 kids that works out to be just about $32 per child.

There is a group of pediatric rheumatologists that are working together to study and treat children with arthritis, but they need your help. With more funding and attention from Congress, more research studies can move forward to help find a cure. The Arthritis Foundation supports, at least, a doubling of juvenile arthritis research over the next few years. Also, the N.I.H. should spend more money training future doctors. Kids around the country are diagnosed too late to prevent damage – please help change this. I hope one day when I tell people I got arthritis at age 3, and they say “but kids don’t get arthritis’ I can tell them “you are right – not any more – because research has found a cure”.

Thank you for the opportunity to speak to you today.