Mary Vought, Big Pharma Apologist and CF Mom, Makes her Move on Maryland
If there's one thing I can't stand, as a Cystic Fibrosis dad, it's people who exploit their connection to CF for ignoble purposes. Hello Mary Vought, executive director of the Senate Conservatives Fund. I'm talking about you.
Her daughter, Porter Louise Vought, is about to turn seven and has cystic fibrosis. That's the pretext Mary Vought recently used in the Washington Post to rail against efforts in Maryland to reign in Big Pharma.
According to Vought's WaPo op-ed, Governor Larry Hogan of Maryland recently vetoed a bill to fund his state's new Prescription Drug Affordability Board. A couple of weeks ago, Maryland's state Senate narrowly voted to override the veto, with the lower House of Delegates likely to consider such an override in February.
"As millions of Americans nationwide patiently wait for access to the coronavirus vaccine, why would lawmakers enact a bill to reduce the availability of lifesaving treatments?," said Vought. "Those effects would likely result from legislation the Maryland House of Delegates will soon vote on. As the parent of a child born with a disability, I believe the move will harm some of the most vulnerable among us."
Baloney. First of all, Maryland's Prescription Drug Affordability Board already exists, having been formed last year. So Maryland has already launched this official effort to bring into the light the otherwise murky manner in which Big Pharma sets its unregulated prices. The bill Gov. Hogan vetoed would simply provide funding to the Board. It's certainly hard to have an effective state agency without funding, but in this instance it's the whole idea of such a state agency that seems to bug people like Mary Vought.
Here's what the news web site Maryland Matters has to say about the ultimate purpose of the Prescription Drug Affordability Board: "Where it finds that drugs pose an 'affordability challenge,' the panel can recommend 'upper payment limits' — the maximum that a state or local government drug plan will be willing to pay. The General Assembly’s Legislative Policy Committee will then make a final decision on whether to apply a payment cap.
The panel is to give particular focus to brand-name medications that cost $30,000 a year or more, or have a $3,000 increase in the price of a cost of treatment from one year to the next."
Trikafta -- the breakthrough CF drug from Vertex Pharmaceuticals -- is the quintessential example. Its list price was $312,000 last year. I'll wager it hasn't declined in 2013.
Porter Louise Vought is not taking Trikafta; the FDA has not yet approved it for patients younger than 12. And, as far as I know, the Vought family lives in Virginia and not Maryland. But you can easily figure out why Big Pharma -- and the members of the CF community whom Big Pharma has successfully romanced -- would go after the Prescription Drug Affordability Board in Maryland. This is the first such agency to be established -- and at least 15 other states are watching carefully as they consider a similar initiative. Big Pharma does not want an idea like this to catch on.
Here's something else Big Pharma fears: the Institute for Clinical and Economic Review (ICER). Last year, this Boston-based nonprofit conducted a detailed review of the costs and benefits of Trikafta and concluded -- not surprisingly -- that the drug is too expensive. Vought and her fellow Big Pharma defenders in the CF community see a direct path that starts with ICER in Boston, runs through Annapolis, branches out to state capitals around the U.S., and perhaps even reaches the halls of Congress in Washington.
Thus, predictably, Vought used her WaPo op-ed to attack ICER directly. "Though controlling costs represents an important goal for our health-care system, a myopic focus on costs to the exclusion of other factors will yield perverse results," Vought complained. "For instance, when undertaking a review of the coronavirus treatment remdesivir last May, ICER stated its belief 'that policymakers would view it inappropriate' to consider 'he potential broader economic benefits associated with future economic recovery.' In other words, the ability of a coronavirus drug or vaccine to hasten the end of damaging economic restrictions and months of harmful social isolation means nothing to the ICER bean-counters.
This is a mischaracterization en route to being defamatory. The benefits of drugs like Trikafta and Remdesivir do not mean nothing to the physicians, scientists, and economists who undertake ICER's analyses. In the case of Trikafta, they acknowledged the world-changing benefit of this drug to many CF patients and assessed the medication's benefits quite generously. They even took a look at whether Trikafta would be worth the price if it were an outright cure for CF (which it is not). Their carefully documented conclusion is that the drug is simply too expensive even if deemed to be something like miraculous.
Vought's op-ed hides the truth in plain sight. She complains that the enabling legislation of Prescription Drug Advisory Board in Maryland explicitly allows the agency to consider costs and benefits, just as ICER does, continuing: "That language means the board can find clinically effective drugs — therapies that alleviate pain and suffering, or even cure deadly diseases outright — too costly based on their price tag alone. If the board uses arbitrary price thresholds and cost-effectiveness research to set upper payment limits beginning next January and manufacturers fail to agree to whatever limits the board sets, Maryland residents could find themselves denied access to care solely on cost grounds."
Did you catch that reference from Vought (which I italicized for your convenience) to what would happen if, say, the Prescription Drug Advisory Board concluded that Trikafta is too expensive and that health plans in Maryland should not agree to pay such a bloated monopoly price? Vertex will have to "agree to the limit the board sets" or, instead, tell CF patients in Maryland that they can't have Trikafta because the Big Pharma firm refuses to make the drug available at a fair and reasonable price.
My guess is that in such a scenario, Vertex would have to cave -- especially if there are 15 or 20 similar boards around the U.S. that are poised to take the same action.
Although the policy debate over these issues really ought to be non-partisan -- the two major candidates for president last year both proclaimed themselves, at least somewhat credibly, committed to reigning in drug prices -- Vought's very public participation in this discussion gives the conversation a partisan tinge that is most unusual in the CF community. The organization she leads, the Senate Conservatives Fund, has a web site whose landing page includes gushingly enthusiastic quotes from Senators Ted Cruz and Josh Hawley, perhaps the two most prominent and outspoken proponents of the scurrilous claim that President Biden stole the 2020 election from his predecessor.
Mary Vought's spouse, Russ Vought, was director of the Office of Management and Budget for the previous administration -- a very powerful and high-ranking political position. Now Mr. Vought is starting something called the Center for American Restoration, proclaiming his purposes recently in The Federalist: "To those asking where we go from here, there must be one conclusion from the right: The counter assault must be sustained. There is no going back. The call for unity must not become an excuse for surrender."
It would be unfair, I suppose, to connect all of that to Mary Vought's defense of Big Pharma and her willingness to use her role as a CF mom to disseminate the propaganda of unregulated monopolists. After all, that's what we hear from lots and lots of CF advocates, even those who don't make their living by trying to get extreme Republican elected to the Senate, and even those without a spouse who praises the previous administration as "the first real counter assault to the left in decades, by a champion who had the stomach and the strength to sustain the withering fire of his adversaries."
All I can say is: Trikafta is too expensive. People of all political persuasions should support efforts to assess the costs and benefits of prescription drugs and force those therapies to be priced accordingly. And if you happen to live in Maryland, please write to your local member of the House of Delegates and as them to override the Governor's veto of House Bill 1095.
[N.B. The pictures above at the U.S. Capitol and U.S. Supreme Court were taken in March 2012 during a Cystic Fibrosis Foundation "March on the Hill" citizen lobbying event. The years fly by! Alas, because of new infection control protocols imposed just a couple of years later, it's no longer possible for CF kids to do stuff like that.]