Posted by gary g on February 26, 1999 at 13:52:45:
OK gang
appears lots of ins co's still won't cover O2, even tho it appears to have about the highest success rate for CH, and it quite cheap.
we've often "talked" about complaining to the gov't, insurance commissions, congressmen, etc - BUT - problem is, the complaints go to a staffer, who checks with the office's medical advisor/consultant, who is usually gonna be a too-thinly spread Doc,or even someone at an ins co - so we're basically using a bunch of intermediaries to ask the fox how to guard the henhouse
maybe a different tack will get us better results;
what if we start leaning on insurance co's directly
something like this:
1. if your Ins Co gives you a hard time about O2, when it has been properly prescribed (which for CH most commonly seems to be something like: "O2, by mask, 8 liters/minute, at earliest onset of attack, for 10-15 minutes"),
DO A WEB SEARCH to find their homepage/email address
2. then POST A MSG HERE,letting us all know WHICH ins co won't cover
3. anybody on msg board who has received relief from O2 email the insurance company customer-service office, or whatever the setup is for feedback;..... POLITELY but firmly stress that they are a longtime cluster headache patient who has received better relief from O2 than many other more costly remedies, and it seems to be a very good idea for patient & ins co BOTH, to cover O2 for specifically diagnosed CH patients
to be responsible & effective, this would need to be done by those of us who have long proven history of CH, and can speak accurately about treatment attempts OVER TIME and relative effectiveness -
the biggest frustration in dealing with CH is getting too excited, too early, about some treatment which seems to relieve the problem, but turns out over time to have been just "lucky timing"; same goes for getting too sure something is a trigger
believe it or not, these health insurance co's and HMOs are NOT making huge profits (anymore)- the pharmaceutical Co's are, but NOT the health insurers
(here in New England, the BC/BS plans are way in the red, and getting bought out, most HMO Corps are beginning to drift into the red ink)
the only way to move them is to show them how they can reduce costs while keeping patients satisfied;
in my last cluster, I figured the O2 cost to be about $6 day, averaging 5Xattacks a day - and it WORKED ! this is a bargain for them compared to imitrex, medical monitoring required by lithium, etc.. my med supplier also handles the BIG tanks, which brings the cost way down - next time I'm getting a big tank for the house & a portable for outings
with INS Co's,the trick is to understand THEIR side of the story and find a way to appeal to them from that angle
Face it people-
they DON'T CARE about us as individual human beings, because "they" don't even know us - that's the real world; be honest - if you work at something that involves a huge number of names or faces, and each is a tiny, tiny part of your workflow, how often are you give any one of them more than a proportionately small part of your attention ? and, we ARE NOT anywhere near the most critical cases they deal with - it's important to remember that
CLEARLY UNDERSTANDING WHERE YOU FIT IN THE SCHEME OF THINGS IS NOT DEFEATISM - IT IS THE FIRST STEP IN WINNING ANY BATTLE
stay OFF the right & wrong, shoulds & oughts, ethical types of arguments
get right to the $$$$$$$
LET'S "TALK" THIS OVER before we launch it
it is probably important to band together for strategy & keep individual credibility as high as possible, for best predictable results:
EXAMPLES (in my opinion):
should only be long-diagnosed cluster headache patients who have a "deep history" of comparitive treatments to talk about - to easy to blow off folks who "haven't tried all the alternatives" "may not even have CH" etc
(aside to "newbies" - so far, the average is over 5 years for a CH patient to get a clear, unchallenged diagnosis, so it IS reasonable to expect a period during which Docs aren't gonna stick their necks out right away, because there are too many OTHER very serious problems which might be confused with CH at first and they HAVE to be ruled ouT)
should COMPLETELY avoid neg-speak (in other words, don't dump on them, if you're asking them to help !)