Is Paroxysmal Nocturnal Hemoglobinuria worth treating?
Come election time there’s always going to be opportunists coming out of the woodwork. Their aim is to use the election itself as leverage to push a particular agenda, be it personal or for a communal cause.
Most of the time they’re ignored and simply brushed aside as irritating however these people aren’t always a bad thing. Recently Jenny Sturrock made a plea to Julia Gillard to finance treatment for the rare blood disease, Paroxysmal Nocturnal Hemoglobinuria.
Unfortunately the leading treatment drug, Soliris, is currently the single most expensive drug in the world.
Affecting just 1-2 people per million, Paroxysmal Nocturnal Hemoglobinuria isn’t a disease that’s going to hit the mainstream any time soon. Thus when a company such as Alexion Pharmaceuticals come up with a treatment drug like Soliris, they corner the market and can basically charge whatever they want.
With demand for Soliris remaining extremely low, Alexion have priced Soliris at a staggering $40,000 AUD a month ($480,000 a year). In justifying this amount, Alexion claim that it cost them ‘$800 million investment to develop the drug as well as a 15-year investment of time‘.
What would be interesting to know is whether or not this was one of those accidental drugs in which pursuing, Alexion discovered and developed 390 other drugs and made billions on, or if it was pure research on Soliris and Paroxysmal Nocturnal Hemoglobinuria alone.
I somehow doubt a pharmaceutical company spent so much and so long on a single drug that affects a small number of people and has such limited use. And even if they did, are they right in charging that much? As the only potential treatment on the market they’ve pretty much got it cornered and even 800 million wouldn’t take that long to make back if they charged something more reasonable for it.
As it stands I’m assuming Soliris isn’t covered by Medicare and most likely the insurance company’s won’t touch it. If Alexion priced it lower (much, much lower), I’d imagine this would be somewhat likely to change.
In Australia alone there’s 96 people suffering from Paroxysmal Nocturnal Hemoglobinuria. At $480 a pop that’s around $46 million dollars a year so despite Mrs. Sturrock’s plea, I don’t really see the government committing itself.
Then again it is election time, so maybe Sturrock’s calculated appeal to the government will literally pay off.
One problem I do have with Sturrock’s particular case though is that she seems to want the treatment more to raise children than to actually live. I’m not saying she wants to die or anything but primarily she seems determined to have a family once on Soliris.
Two problems arise from this. Firstly she’s chronically sick and probably not the best candidate to be raising children, and secondly a $480,000 a year random person then becomes a $480,000 a year mum.
I’m assuming having Paroxysmal Nocturnal Hemoglobinuria on your resume doesn’t look too good either so throw in all the associated parenting welfare too.
Beyond treating a woman what Sturrock is really asking the government to do is fund her child(ren). In being against stupid schemes like the baby bonus and obscene amount of tax cuts families already get, spending $480,000 plus welfare every year just so someone can play mum is an extremely hard pill to swallow (no pun intended).
Especially when there’s adoption and plenty of other options out there.
Finally, as far as poltics goes, Gillard’s reply to Sturrock’s request was kind of amusing. In full campaign mode Gillard replied to Sturrocks plight by stating she was “very, very sympathetic to her (Sturrock’s) personal circumstances’.
This is a woman who respectfully has a career over a family and announced . Both of which mind you I think are great, it’s just that the irony of someone asking Gillard for boatloads of money so that she can have children probably wasn’t the smartest move.
As a matter of saving a life it’s not an easy decision to make either way. It’s not like Sturrock developed Paroxysmal Nocturnal Hemoglobinuria through any fault of her own but it does boil down to, I think, a case of the greater good. $480,000 a year is a lot to pay for one person’s treatment, let alone $48 million a year.
Add to that the fact that if we did start paying for treatment we’d probably have everybody who has Paroxysmal Nocturnal Hemoglobinuria in the world trying to gain residency here. I mean how far would you go to get treatment for a life threatening disease.
On the other hand it’s an incredibly selfish amount to ask for just to raise a family.
Hmm, decisions decisions…
August 15th, 2010 at 3:35 am Malissa(Quote)
I have PNH and am currently receiving Soliris.
Although having a family may seem selfish to many, patients with PNH struggle to make their lives as normal as possible. Its not easy being told you have a rare disease. Relating to people in that regards is almost impossible.
Keep in mind that having a child is that woman’s human nature, her “calling” so to speak; however, PNH is not. She’s trying to live a life just like everyone else.
August 15th, 2010 at 7:47 pm ozsoapbox(Quote)
That’s a pretty shallow argument, I could say it’s my calling to plant my seed in as many females as possible. Stuff the environment, moral and social consequences of my actions.
Plenty of people have succesful lives without kids and if she does want them, there’s plenty of non-selfish, ridiculously high cost to society options out there for her.