Here is another post borrowed from my juvenile arthritis parent group (names changed of course). This was in response to a question about the hardest part of having a child with arthritis:
“For me besides watching my kids suffer and not being able to deal with it the hardest part has been the financial side of things. It is very expensive. Evan typically uses about $250,000 worth of medical care a year not counting medication. He is on 11 meds and the remicade. Not counting the medical side of the financial it is expensive having him in the hospital. Of course twice now when Evan has been in the hospital Karen had to be hospitalized also. But it cost money for food while they are in the hospital, we use a lot more gas making multiple trips plus my husband cannot work overtime to pay for everything. We do not do anything fun anymore. It has been 6 years since we have been on vacation (that was camping), we do not go to the zoo or any of those other activities.”
I can completely relate to this issue. I have not been able to work full time since Marty got sick, and don’t know how I would manage without the state childrens health insurance program. I don’t have insurance available at my work, and absolutely would not be able to afford an individual policy on a child with a chronic illness.
Our lifestyle has taken a nosedive, and it’s looking like I won’t be able to take off work this summer even to visit family out of state. If it weren’t for help from my family and friends, and the Arthritis Foundation, we would not have been able to do anything remotely resembling a vacation for the past 2 1/2 years, since Marty first got sick.
It’s no surprise that arthritis costs the US economy $128 billion (with a B) every year. I don’t know how much of that is because of juvenile arthritis, but if a child goes through their entire life battling this disease, the total cost just for that one patient has to be staggering.
We need a cure.