Thursday, February 19, 2009

Information Society

There is so much information out there. Some good. Some bad. So many people blogging about their lives. So many corporations and governments tracking our interactions. So many medical professionals trying to do what they can to help their patients. So many medical equipment and pharmaceutical corporations trying to sell their products. So many medical insurance corporations trying to keep the cost-to-benefit ratio in line.

Digital information never dies. Some is public, like every post I ever made on Usenet dating back to 1990. Some shouldn't be public but is, like my personal information that has been "lost" by two of my previous employers. And then there is information on the effectiveness of medical treatments.

When BR and I met with the representatives of the corporation that makes the spinal cord stimulator equipment, I had one simple question. "Based on the data you've collected over years of trials, what are the chances that someone with BR's condition will benefit from the device?" You would have thought I had asked for their first born.

The responses we got ranged from, "We don't collect that type of information," to "FDA regulations don't allow us to disclose that type of information," to "We have 'Patient Ambassadors' that you can e-mail," to "When I searched the internet, I found a study that showed up to an 80% effective rate on MS patients." All within a 45 minute guided tour/sales pitch.

It is so obvious that the SCS equipment company isn't going to talk. Why would that be? I'm guessing it's because of the insurance company. If they admit that there is less than a 50% chance of success, the insurance company may not pay for the trial at all.

But wait a minute. The insurance company has their own information. For years they have been paying for SCS trials and know which patients went on to get the full implant. So I put the same question to the insurance company -- it's been a week with no response. Why would that be? I'm guessing tort law. If the insurance company admits that there is greater than a 50% chance of success and they still denied the procedure, they may get sued.

Lost in all of this is the most important person in my life who is in a whole heap of pain. The SCS trial won't be easy for him, no matter how many times the sales critter says "it's just a little needle." Every time she said that in the meeting, he would glare at her, until he finally said, "Have you ever had that little needle shoved in your back? No? Then shut the fuck up!"

It's pretty obvious that SCS treatment won't be a slam dunk for BR, but still we are leaning towards the trial. The dosages of pain killers are only going up, and with each increase, I'm watching BR struggle more to communicate clearly. In the end, the insurance company's threshold for approval is going to be higher than ours. I just hope it isn't too high.

Here's what BR has to say.

3 comments:

Anonymous said...

Steve, in situations like this where you have no control, sometimes you just have to let go and let God take over and show you the way.
I'll continue to pray for you both in the meantime. Hang on and keep the faith - Susanne

steve said...

Hi Susanne -

I agree with you completely.

God has given me many gifts. One of them is the ability to problem-solve like few others. I can remember all the way back to grade school, I was the best at "word problems".

God has now thrown a challenge at me that is unlike any other I've encountered. One that has attracted the brightest of minds and millions of dollars, and yet has no solution. So I have opted to change the problem from "Make BR better" to "Give BR the best life I can." I believe that God is smiling on those efforts.

Now if I can just get these blasted corporations to do the same.

herrad said...

Hi Steven,

You are doing wonderfully well looking after BoRobert as is Richie in looking after me.

This disease is a huge challenge for us all.

Te big shame is that instead of all those people hours and money are spent designing weapons and making war could be spent on resear maybe MS and ALzeheimers and other nasty degenerative diseases would be cured.

What a strange planet where we can fly to the moon but not restore spinal injuries.

Mad!

Take care of each other.
Love,
Herrad

ps BR is very cute in the clip have a loving weekend.