Monday, January 02, 2006

hemophilia and Dr. Phil - definitely imperfect!

It seems that a guy with hemophilia and Hep C was on Dr. Phil recently.
[ - click on "fighting the pain"]

In the show, he talked about the pain of joints that have had too many bleeds. Quick review: bleeding into the joint destroys cartilege, which pads the joint. No cartilege, no padding. No padding, then the bone scrapes on bone when you move - major pain. He also talked about Hep C and how it's cost him his business, the insurance nightmare of it all, and his family's wonderful support.

I'm torn. On the one hand, insurance for folks with hemophilia is a nightmare. My kid costs hundreds of thousands of dollars, and a million dollar cap is a joke to him. My partner can't get a job with a small company, because they couldn't afford a healthcare package that covers us. And insurance companies are cracking down on expensive cases like us, trying to cut costs - it's a huge problem. One insurance company offered us a nurse, 'specializing' in our disorder. She would be an advocate for us, helping us get our unique drugs and treatment costs covered. I leaped for the opportunity - and then I talked to her, and found out that I knew much more than she does about the condition, and that in fact she was there as a watchdog, and was part of a program that would give the insurers access to our treatment logs, letting them second guess our decisions, our doctors' decisions whether to treat for this bump or that bruise. Nice. So yes, go on TV and tell people about fighting with medical bills and costs.

More: this guy is part of the generation of people with hemophilia who simply got screwed. They were the first generation to have some sort of treatment for hemophilia, so they were also the first generation of severe hemos to survive it, finish school, even get married. All that hope, all that triumph - and oh yeah, HIV/AIDS and hepatitis. It's a bitter pleasure to see a guy from that generation get some airtime.

But. Something about this show sits uneasily with me. It was a plea for help, and he definitely got it, certainly needs it. But the snippets I'm finding on the Dr P website show little effort to educate, to take this beyond the focus on the individual. There are countries where hemophilia is a death sentence. There is a frightening shift afoot in the insurance world that threatens to cut costs by cutting benefits for expensive cases like ours. None of this is shown. And most of all, this guy is not my kid. And please god/goddess/resident spirits, he will never be my kid. My lucky little boy, with his artificially produced clotting proteins and his preventative if ruinously expensive care is an example of the modern hemo kid, and that figure was missing from the show. So what is the viewing public left with: Ryan White, come of age? That is not hemophilia - that's only a particularly tragic part of the story.

So, was this good or bad for the bleeding disorder community? I just don't know. But it was definitely good for the guy who was featured by Dr. P.

Here's what some of the members of the bleeding disorder community had to say:
I am the mother of a severe 17 year-old hemophiliac son and we capped out our insurance twice and now I am sweating what to do next and yes I have seen my son suffer tremendously. Now not only does he suffers bleeds but he has an emotional struggle about his future. How can hemophiliacs have bright futures not knowing if an insurance company will cover the medication you need or sweating how long until they cap out again. So I know heartache, have witnessed my son suffer but yet I am happy for David and his family.


Actually, I thought the segment was really lame. Here's a guy on national TV with a chance to shed some light on the issue of blood safety and the experience of the hemophilia community and he blows it. How about the dude taking cash for all the crap he got and donating it for a cure? After all,the dude had a daughter which makes her an obligate carrier. I feel sorry for the guy for being so caught up in his own shit that he wrote asking for help only for himself. The dude is still married, has a family, is walking, has product... far from some of the crap the rest of the hemophilia community is experiencing. What better way to shed light on the horrors of the American health care system. "David" blew it.

Who is to say which family dealing with hemophilia needs monetary assistance more then another. As the mother of a son with hemophilia, I know it ravishes my son and all his dad and I can do is continue to pay the bills so he can continue to get factor. It is a helpless situation but we do what we have to do. I may never travel around the world or have new cars or even go a month without a medical bill but I have my son and that is what is important. If the guy on Dr. Phil did get a gift, then good for him, enjoy and help others when you can.

All quotes reproduced with permission from the authors.


magid said...

About the first quote: how can you cap out insurance multiple times?

mama o' the matrices said...

by switching insurances/jobs. Lousy, eh? But what's a million dollars to a kid who costs oh, a couple thousand per week - minimum?! The problem is that current lifetime caps were set back in the 70s, I believe, and haven't kept up with inflation. From time to time groups like the National Hemophilia Association go to Congress and ask to have the caps raised. They are inevitably out-lobbied by representatives of the insurance companies - go figure.

sil-ly said...

Um - y'know. A cute little kid like that boy of yours and articulate advocate like yourself would make for a really good response show on Dr. Phil. I know that he sometimes responds to critical responses. It couldn't hurt you to contact his show and make some of these points...

Joy said...

I can understand your frustration at the show, mixed blessing that it is.

It's been a hard discussion here, explaining to the beautifully innocent NZers about health care in the U.S. There simply is no good answer as long as the insurance companies hold the purse and it is frightening, which you well know. My own mantra in this is that I will leave the country if it turns out JuneBug is sick. It doesn't help me sleep any better.

Kim Holmes said...

Simple. My insurance company noted the large sums that had exceeded one million dollars they were paying for Recombinate therapy for my son. They sent me a certified letter, stating I had surpassed by cap. My husband, who is an attorney as them for a copy of their policy showing the difference between the medical cap and pharmaceutical cap. (My son's medical costs for the year were only approximately $5,000.00) In turn, they acknowledged that there had been no pharmaceutical cap in the past but guess what? Starting from that date forward, there would be. We were more or less RESTARTED at a zero balance but would be cancelled upon reaching the one million. Reaching one million on every other day Recombinate prophylactic treatment does not take very long.

Sarah said...

Seems like you all have missed the point. The show wasn't about hemophilia, the show was about Dr. Phil doing something nice at Christmastime for some people who have suffered a lot.