As a parent of one of the 300,000 children who suffer from arthritis, a chronic, painful, and often disabling disease, I want Congress to pass meaningful health care reform this year that is accessible, affordable and comprehensive.
Arthritis is the number 1 cause of healthy people having to stop working and go on disability. There are 66 million adults living with Arthritis today and the number is on the rise. This disease cost the country $128 billion dollars annually. With early diagnosis and proper treatment this disease is treatable and many can continue living and working saving the governments money for the really disabled.
American families, both insured and uninsured, are struggling with rising health care costs. Due to the nature of chronic disease, people with arthritis struggle to pay for physician visits and the increasing costs of multiple medications and other necessary care to properly manage their disease. Without access to appropriate care, people with arthritis are at greater risk for complications and permanent disability.
I support health care reform which eliminates the discrimination for health coverage based on health status; caps out-of-pocket expenses; eliminates lifetime limits on health coverage; promotes prevention services, and supports loan repayment for pediatric specialists. These reforms are included in the Patient Protection and Affordable Care Act and will greatly improve the American health care system for adults and children with arthritis.
I also support a bill mandating a National FDA registry of the Juvenile Arthritis Drugs being given to our children and the outcome of a patient's long term use. The drugs are working amazingly, but much research is needed to detirmine the long term effects and to address the current side effects of the medications. I don't want to see my daughter stuck in a wheelchair with excruciating pain. She was diagnosed at just 14 months old. I have seen the medication help her walk again twice. Her Arthritis is now manageable, although we still have those days that her shoes won't fit on her feet. We have to try to push through this everyday. She is only 4 years old now and she gets a shot every week that makes her sick for 1-2 days after. She is on folic acid supplements because of the sores in the mouth from medication. She takes 2 times the recommended amount of Prevacid because of the acid reflux the long term use of medications have caused. Along with a Rheumatologist she also sees a GI specialist. We fight with elevated liver enzymes that we monitor closely with lots of blood test. She always amazes the nurses and me with her bravery and strength. This disease can cause even the strongest of souls some times of frustration. It is definitely not a life for a 4 year old, but we continue to push forward. Because we want the chance for he to play and run and be a kid while she can. I do wish I had all the questions answered. I ask the doctors and pharmacists, "How will this medicine affect my child?" How can I be prepared for what is next to come when no one can answer the question of what are the long term effects of this? This is why I ask you, no I beg of you to please help us bring attention to the dyer need for more research and better record of this disease and its course of action. I hope to see changes as the legislation moves through Congress and maybe some answers to my questions in our future. Thank you for your consideration.
