Torchiana has been among those arguing that repeal of the law could disrupt millions of families who have relied upon it for insurance coverage.
“De-insuring 20 million people, many of whom were probably Trump voters, is a pretty difficult thing to do politically,” Torchiana said in November, according to the Boston Globe. “Figuring out what the pathway is to altering the ACA and doing so in a way that actually doesn’t increase the cost of health care is pretty difficult. There’s not a simple policy solution to it.”
Torchiana did not reveal what he said about the Affordable Care Act to Trump. Partners spokesman Rich Copp told STAT that Torchiana was invited by the president-elect. “They had a conversation that touched on a wide range of health care policy issues, including affordability, access, quality and biomedical research,” Copp said.
Also, Adam Vacaro of the buiness section reports that Biogen Inc.’s new drug “to treat a rare genetic disorder in children will be priced at about $375,000 a year per patient — its most expensive medicine ever — the Cambridge biotech company said Wednesday.”
Worth noting that drug companies were once so reluctant to make drugs for rare disease that Congress had to pass The Orphan Drug Act to entice them. It seems that now they just charge a lot of them. Could it be that these rare diseases the low-hanging fruit for the developers of biologics?
Worth revisiting former Globe reporter Steve Heuser’s 2009 piece on how Genzyme sought out patients around the world with a rare condition and convinced governments to pay the full-price for the drug– $160,000 a year.
Jose Gonzalez felt indescribably lucky that his little girl, wasting away beneath hibiscus vines in Central America, had been found. But for Genzyme, it wasn’t luck. It was another step in a remarkable business strategy: In countries from Colombia to Taiwan to Libya, the Cambridge firm has compiled an extraordinary track record of searching out patients like Tania, providing desperately needed treatment, and then successfully pressing their governments, even poor ones, to pay full price for the most expensive drugs in the world.
That strategy has helped Genzyme bring in more than $1 billion a year on Cerezyme alone, and to develop an arsenal of similarly expensive drugs for other rare diseases. And Costa Rica would soon learn a lot about Genzyme’s determination to be paid when it considered the cost of saving Tania Gonzalez, how it would drain resources from other patients, and decided that its answer was “no.”…
What (Genzyme) won’t do is offer a discount. Although discounts are becoming more common on pharmaceuticals sold in lower-income countries, Genzyme follows a “full price or free” model, and works hard to be sure it’s the former.
“If you’re going to give on the price someplace, everyone’s going to ask for a deal, and then you’ve got a massive mess – so from day one, it was one price,” said Alison Taunton-Rigby, a former Genzyme executive who was with the company when it began setting its price policy.
Geoff McDonough, current head of the division that sells Cerezyme, says the policy allows the company to maintain the profit margin needed to research future drugs, while also keeping a door open for the truly impoverished.
“We’ve chosen a way here that’s been consistent across the company, and has met the specific needs and complexities of patients suffering from very rare diseases,” he said.
It is a balancing act, he says, that amounts to an “extreme example” of a discounting policy: the company currently provides the drug free to more than 300 patients worldwide.
Back to Partners, this time on costs
letter from BU’s Alan Sager on the many confusing interpretations of health that is health care costs in Massachusetts:
David Torchiana, president and CEO of Partners HealthCare, once again has recited Commonwealth Fund analyses of federal survey data showing that Massachusetts health insurance premiums are a lower share of median income than prevails nationally (“First, do no harm”).
But federal data on actual health spending contradict Torchiana. Massachusetts health spending per person was 36 percent above the US average, the highest in the world. After deducting Medicare and Medicaid dollars, private Massachusetts health costs per person were 40 percent above the US average, an excess of $11 billion over national average costs. Meanwhile, median income here was only 20 percent above the US average.