I have a little bit of bad news for all of you Internet Surfers. This will be your last chance to visit Jo's blog for free. Starting tomorrow, you will have to pay a toll every time you visit Jo's blog, just as you would every time you use your favorite toll road to get across town. Please write your congressman if you have any concerns.
In addition, we will now be charging for photographs with Jo at events and we will be selling "minutes" of conversation time that can be used very similar to cell phone minutes. However, these minutes will be used for face to face conversations, as well as phone conversations. Fees for written responses to email are still pending final approval.
Lastly, I (Mr. Give Until It Hurts) have volunteered to "sell" every inch of visible skin on my body for advertising space. Paul Giovino of Lithia Chrysler/Jeep has already reserved my forehead for his new 4-Door Jeep Ad.
Why the radical changes? The pricing for the PNH "Miracle Drug" has been released. We now understand why it is a miracle drug. It would be a miracle if any insurance company ever agreed to pay for it! The drug, called Soliris, costs $489,000 per year! I am ashamed that just two weeks ago, I was complaining about the cost of Starbucks at the Denver Airport.
I did make Jo double check that figure before I would believe it and according to the NIH, it is accurate. Of course, this changes things a "leetle" bit. Fortunately, Jo's PNH problem is small compared to some people with PNH. Jo has had two hemolysis "episodes" (that we know of) where her body destroyed red blood cells at a very rapid rate. We have talked to doctors who have patients that have episodes every week. This is another reason why Jo was probably never a candidate for Soliris last year before it was approved by the FDA.
The good news is that Jo's PNH problem isn't anywhere near as bad as it could be. The bad news is that we aren't going to start Soliris anytime soon. Don't forget that as demand goes up, prices normally come down, so if you happen to run by a drug store this weekend, pick up a bottle of Soliris to throw in your medicine cabinet. Actually, what if we all buy Soliris on Thursday of this week AND we all boycott gas stations on the same day. I'll bet if everybody that reads this blog emails a copy to at least five friends, we'll have the price of soliris down under $485,000 by the weekend!
Or then again, maybe not.
8 comments:
Good grief! That is absolutely outrageous! How could anyone, save a very few filthy rich folk, afford that? It's mind-boggling.
I think you're being quite creative Tim, and a swell guy for offering to lease out any portion of your skin for advertising. There might be some very interesting ads coming up soon!
It's good news that Jo isn't in dire need of this drug.
I kinda like the idea of buying a bottle just have ... just in case. Never know when it might be needed!
After this piece of news I think it will be atleast, oh, probably, 2 or 3 HOURS before I complain about how much something costs!!
Sue
SF Bay Area
WOW!! That is unreal. And I thought that $30,000 a year for Bette's arthritis treatment was bad. The stuff can't possibly cost that much to produce. I know they are still trying to pay for research cost and all that, but at that price they ain't gonna sell much.
Fred
Hey ... at only .9297122 cents a minute, how bad can it be?!?! Using the "glass-half-full" mentallity, it's not all THAT bad ... eh?
Sorry, couldn't resist.
Ok, back to work for me.
~c~
I'm sure I can get JoeArchitect behind buying some ad space, too...
Holy COW!
Sounds like big pharm is what we should be writing our congressmen about - not tolls on Jo's conversation highway...
~Staci
Tim -
Tell Jo that maybe this is a blessing in diguise - if it is so new that it costs so much only Bill Gates and Donald Trump can afford it - than it probably hasn't been adequately field tested anyway. Clinical trials are a start - but the proof is in the pudding when people start usig it and they discover those nasty little side affects.
rms ;)
Unbelievable! The supply and demand factor must be out of this world. Maybe the "Shock" causes the healing!
Loving thoughts and prayers to Jo, Tim and Anna
jam
It's great to see your never ending sense of humor in dealing with this situation. It seems so aggravating sometimes, but with the attitude you guys all have things can only keep getting better.
Paula
OMG,
So let's see, how much is my "1 Hour's Private Lesson with Jo" worth? Maybe I can auction it off and raise some $$ that way? OK folks, the bidding starts at $475,000.00!!
Seriously, that price is mind boggling!
Carmen
Toronto
Tuesday June 5th.
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