A couple of rare diseases requiring astronomically expensive drugs in order to keep patients healthy are a reminder to advisors why the battle against rising drug prices is worth fighting.
Canadians who suffer from two ultra-rare diseases, paroxysmal nocturnal hemoglobinuria (PNH) and atypical haemolytic uremic syndrome (AHUS), require a drug that costs $700,000 per patient per year, putting most sufferers in the impossible position of either going without the drug (causing organ failure and ultimately death) or financially bankrupting their families in order to pay for it.
In order to move the government to action on these two diseases – which affect just one or two people in a million – patient groups have taken up the fight against provincial governments unwilling to foot the bill on these incredibly expensive drugs.
Ironically, many of these public relation campaigns are funded by the drug manufacturers themselves, and generally they’ve been very successful in moving provincial health ministers to act.
You might not think these rare diseases have much to do with your insurance business, but CLHIA begs to differ. Its 2013 report on prescription drug policy in Canada made it patently clear big changes were necessary.
“Rising drug costs, particularly related to the increasing incidence of rare but very high cost drugs, undermines the ability of employers to continue to offer drug coverage benefits to employees,” the report’s executive summary stated. “A pullback on drug coverage by employers would have dramatic implications, not only for individuals, but also for governments who are themselves struggling with rising healthcare costs.”
Alexion, which manufactures Soliris,one such drug, generated almost $700 million in net profits in 2014 from it on revenue of $2.2 billion. It’s not hard to imagine when you consider a 300 milligram vile costs $60 to manufacture but costs Canadians who suffer from these diseases a whopping $6,000 to buy – a 3,600 per cent markup.
This week the Patent Medicine Prices Review Board held a preliminary hearing in Ottawa to discuss Alexion’s drug and what should be done about the price of Soliris, including lowering it as well as forcing the company to repay funds generated from what many suggest is the highest price for this drug anywhere in the world.
"As more and more of these expensive drugs like Soliris come along," says health economist Michael Law, at the University of British Columbia, “we're going to have a reckoning, in terms of how we make those decisions [whether to cover these drugs]."
In order to move the government to action on these two diseases – which affect just one or two people in a million – patient groups have taken up the fight against provincial governments unwilling to foot the bill on these incredibly expensive drugs.
Ironically, many of these public relation campaigns are funded by the drug manufacturers themselves, and generally they’ve been very successful in moving provincial health ministers to act.
You might not think these rare diseases have much to do with your insurance business, but CLHIA begs to differ. Its 2013 report on prescription drug policy in Canada made it patently clear big changes were necessary.
“Rising drug costs, particularly related to the increasing incidence of rare but very high cost drugs, undermines the ability of employers to continue to offer drug coverage benefits to employees,” the report’s executive summary stated. “A pullback on drug coverage by employers would have dramatic implications, not only for individuals, but also for governments who are themselves struggling with rising healthcare costs.”
Alexion, which manufactures Soliris,one such drug, generated almost $700 million in net profits in 2014 from it on revenue of $2.2 billion. It’s not hard to imagine when you consider a 300 milligram vile costs $60 to manufacture but costs Canadians who suffer from these diseases a whopping $6,000 to buy – a 3,600 per cent markup.
This week the Patent Medicine Prices Review Board held a preliminary hearing in Ottawa to discuss Alexion’s drug and what should be done about the price of Soliris, including lowering it as well as forcing the company to repay funds generated from what many suggest is the highest price for this drug anywhere in the world.
"As more and more of these expensive drugs like Soliris come along," says health economist Michael Law, at the University of British Columbia, “we're going to have a reckoning, in terms of how we make those decisions [whether to cover these drugs]."
