Medicine That Prevents HIV Is $1600 A Month. It Doesn't Have To Be.
Hey! Did you watch Rent Live But Not Really Because The Guy Who Played Roger Hurt His Ankle last night? I did! And as a former theater kid, I had some pretty big feelings about it. I will not share these feelings because, unfortunately for you all, this is not a "Robyn Complains About Musical Theater" blog. I would, however, like to talk with you about a very important thing that was brought up by ACT UP New York during the Not Live performance.
Yes. That ACT UP. The AIDS Coalition to Unleash Power, which notably forced Wellcome to lower the price of AZT in the '80s and forced the national discussion on the AIDS epidemic to the dismay of so many politicians who were perfectly content ignoring it. They are still around, and they are still doing good work.
HIV/AIDS is also still around. In 2016, there were 39,782 new diagnoses in the United States. That is still a very large number. And while we have come a long way with education and medication and what have you, we still have a long way to go. As you may know, there is a drug, PrEP/Truvada, that is 99 percent effective in preventing HIV transmission.
Unfortunately, as ACT UP pointed out last night...
If there’s any tweet you RT tonight, let it be this. PrEP is a HIV preventative drug that reduces the risk of HIV t… https://t.co/DXFb5uF8b0— ACT UP New York (@ACT UP New York)1548642170.0
Gilead Sciences (no, really), the company that owns the patent for Truveda, charges American consumers $1600 a month for the drug -- which only costs $6 a month to make. They hold exclusive rights to the patent for the life-saving drug, which means that no one can make a cheaper generic version, despite the fact that a generic version made by Teva Pharmaceuticals has been approved by the FDA. As a result, only 10 percent of the population that should be taking PrEP is actually taking PrEP.
Other countries, including Canada, France, and the UK, have ruled against Gilead being able to hold this patent, so consumers there can get cheaper generics, which in turn drive down the cost of Truvada. Why? Because they consider health care a human right and HIV prevention a public good, and they are not going to stand for a pharmaceutical company screwing their citizens like that.
In Canada, the generic version costs $250 a month without insurance (yes, insurance still exists in Canada) and is free in Ontario for those under the age of 24 under OHIP+ (as are all medications). In many other countries across the globe, the cost of a one-month supply costs under $100.
Now, if you are a cold-hearted Ayn Rand acolyte of some kind, you may be thinking "Well of course Gilead should be able to profit off the drug they made! They put all their own money and hard work into this medication, it would be wrong to just go and let someone else make a cheaper version! And they need that money to do more research and development!" This is the same argument used to defend all the other price gouging in the pharmaceutical industry, as well as the US government's refusal to bargain down prices like every other government on earth does.
However, to paraphrase President Obama -- they did not build that. Almost all of the research for Truvada was funded by American taxpayers through the National Institutes of Health and by charities like the Gates Foundation. Americans paid to make this drug. Money came out of our taxes to fund it, and now we have to pay more for it than any other country does, because we are suckers.
In fact, US taxpayers have funded the research for every major new pharmaceutical drug since 2010. And then we pay more for them than any other country does. While we sit around convincing ourselves that we sure are saving a lot of money by not having universal health care.
Gilead argues that this price is not that big of a deal, since Truvada is often covered by insurance, and because they offer "copay coupons" to assist with the cost. However, many private insurers have stopped counting these coupons towards deductibles, leaving many patients high and dry. Not to mention that price gouging drives up the cost of insurance across the board. That money has to come from somewhere!
The thing that flies over everyone's head whilst they are so haughtily talking about how universal health care is a crazy, radical, pie-in-the-sky idea that could never really happen in real life (except in almost every other country on earth) because there would simply be no way to fund it, is that IT ACTUALLY COSTS LESS MONEY OVERALL. For real. The Koch brothers conducted a study hoping to show that it would cost way more to have Medicare For All than to not have it, and even their study showed that it would cost $2 trillion less than we are paying now.
One big reason for this is the ability to bargain down the prices of medications and buy them in bulk, Costco-style. Other countries, acting like one big insurance company, have leverage. They can tell a pharmaceutical company, "Sure, you can sell your drugs here -- but not at that price." We do not have any such leverage in the United States.
This is part of why Eli Lilly has been able to jack up the price of insulin -- another medication for which there is no generic option available -- from $40 a vial to $130 a vial. The people taking it have no leverage. They can either cough up that money or they can die. Same deal with Epipens.
Now, patents are supposed to expire, but companies get around this by making incremental changes to their formulas and then refiling for a new patent.
While we don't have the option of bargaining down prices, there is another option-- for the US courts to do what other courts throughout the world have done, and break the patent. According to activists, this could be accomplished by the National Institutes of Health exercising "march-in rights" on the patent.
When the generic never materialized, activists from PrEP4All, the group behind the #BreakThePatent movement, spoke to patent experts and discovered a little-known aspect of the Bayh-Dole Act of 1980, also known as the Patent and Trademark Law Amendments Act. This aspect of the legislation, called "march-in rights," provides a method for the government to break the exclusivity of a patent.
March-in rights allow the government to require a patent holder "to grant a nonexclusive, partially exclusive, or exclusive license in any field of use to a responsible applicant or applicants" if "such action is necessary to alleviate health or safety needs which are not reasonably satisfied" by the patent holder.
Clearly, the "health and safety needs" here are not being reasonably satisfied by Gilead (again, just wow). Otherwise, we would not even be having this conversation.
As James Krellenstein and Peter Staley of the PrEP4All Collaboration and physician Aaron Lord wrote in a New York Times op-ed last year, not only would this save lives, it would save everyone, collectively, a hell of a lot of money:
A critical component of this plan is insisting that federal agencies use their statutory authority to break Gilead's undeserved monopoly. With low-price, generic Truvada, the cost to cover every American who needs PrEP — including both drug costs and clinical care — would be less than a tenth the amount that the federal government already spends on H.I.V. care. The billions saved could pay for vital services to ensure those who need PrEP the most can get it and those living with H.I.V. can keep the virus suppressed. If the patent on Truvada remains, the plan will cost over $20 billion.
Wouldn't that be nice?
Call me crazy, but I think that if American tax dollars are funding the research for these medications, Americans should be able to benefit from them, and should not be held hostage by price-gouging monopolies. Then again, I am also a wacky idealist who thinks health care is a human right, so what do I know?
As for what we can do now, ACT UP is asking people to sign their petition to demand that the National Institutes of Health "march-in" and break the patent. It's not much, but it's something.
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Robyn Pennacchia is a brilliant, fabulously talented and visually stunning angel of a human being, who shrugged off what she is pretty sure would have been a Tony Award-winning career in musical theater in order to write about stuff on the internet. Follow her on Twitter at @RobynElyse