Problems like Riley's deserve militant action, in my opinion. I guess my saying so won't much change my well-earned reputation for going ballistic.
I probably should have posted this as a comment on Mack's last post, but I wanted to include a link to this article about one Nelene Fox, whose doctor attempted a Hail Mary autologous BMT for her stage four breast cancer and was slapped down by her HMO, Health Net.
You should take a look for yourself, but to make a long story short, the patient eventually had the treatment, which did not save her life, after her family raised $210,000 to pay for it. The insurance company was hit with the largest judgment ever handed down (at the time of writing) for denial of a medical procedure. The jury's decision was unanimous.
Health Net disallowed coverage for the procedure because it deemed autologous BMT an "experimental" procedure.
The article includes a quote from Fox's lawyer, Mark Kiepler. "'Experimental' is a euphemism used by HMOs to refer to treatments deemed too expensive." He must not be the only person who picked up on that, because, according to the article, 25 of Kiepler's clients (at the time of writing) subsequently persuaded their insurance companies to cover procedures that were initially disallowed using the outcome this case. I guess a verdict $89 million in compensatory and punitive damages is a powerful threat.
So let's take a look at that. I don't know much about Hurler Syndrome, and I know next to nothing about breast cancer treatment, but it sounds to me like the insurance company got slapped for failing to cover BMT in Fox's case, something that actually was something of a last-ditch effort to treat stage four (metastatic) disease. Covering transplant for an under-two Hurler patient seems much less "experimental", since it's my understanding that allogenic stem cell transplant is the currently agreed upon as the treatment of choice for Hurler patients whose doctors determine that they are candidates.
I'll bet a jury would totally see it that way.
I wonder if the folks at Sun Life have ever heard of Nelene Fox. The article I read was dated 1994, so perhaps they've forgotten about her. If so, maybe they ought to be reminded.
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3 comments:
Wow! Great work sis! Nice sleuthing... We should definitely make sure that the family and insurance co know about this.
I was thinking about it this AM. In addition to the numbers game that I mentioned in the other posting, the primary difference here is that there is no alternative treatment. If another alternative existed, there would at least be an argument for Sun Life's behavior. But because there isn't, I'm certain this would be just like the case you found.
Bro.
I wonder if they're arguing that ERT is the only available treatment that is not "experimental", as you would assume to be the case by reading the MPS web page.
As if we needed one more reason to nudge MPS in the direction of updating that site!!
who has all hte insurance knowledge in the world. I have a Pain dr who was formally a Bone Marrow Transplant Specialist for many years and I will ask her if she can reccomend and useful tips for Riley's family to. I will tyrto get ahold of her tonight but otherwise see her Thurs....
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