Eroding tolerance

A wonder drug shows us the drug industry’s fundamental failure to communicate.

By Peter Kolchinsky

POLICY | CULTURE | BIOTECH

Photo by Mike van den Bos on Unsplash

April 23, 2024

A recent article in the Boston Globe highlights pushback around how some patients with cystic fibrosis (CF) around the world can’t access Trikafta, a life-saving wonder drug invented and marketed by Vertex, a pioneering Boston-based biotech company. Indeed, it’s heartbreaking when any person goes without, and it would be ideal if this drug could be made available at cost in the poorest countries. It’s important to shine a light on those situations. 

But there’s another important concept at play that many people who dedicate their lives to discovering, developing, and making new, lifesaving drugs don’t understand: the extent to which the drug industry has failed to communicate its value proposition to society and to inspire its customers to pay for that value. That is to say, when the public and even legislators representing our biotech innovation hubs focus on the price of a breakthrough drug without a sense of its value or how it came into being and insist that innovators should not only invent medicines but pay for them, too, that’s a self-inflicted wound. 

But let’s back up and start with the specific case of Vertex and Trikafta. It’s worth understanding access to Trikafta from the perspective of three markets: patients in the US, patients in other high-income countries, and patients in low- and middle-income countries. 

1. In the US, Trikafta is widely accessible. That’s because payors understand the drug is worth covering. That doesn’t mean that a health plan will pay any price; but Trikafta is priced similarly to other drugs for orphan diseases and denying access to Trikafta while paying for many other such drugs would not make sense. Plans might still put up obstacles to access like copay maximizers or accumulators, and yet all patients in the US (sometimes with Vertex’s help) ultimately get through this administrative nonsense and get their hands on the drug. 
2. In other high-income countries, accessibility has been mixed. Some countries like Australia, the UK, and Canada are guilty of delaying access to Trikafta and earlier CFTR modulator compounds. These countries erect barriers to access and openly undervalue the drug (e.g., publishing analyses that ignore aspects of a medicine’s value in order to claim it’s not worth its price) before ultimately entering into reimbursement agreements at prices that are typically lower than those in the US. More than 40 countries formally reimburse Vertex for Trikafta.
3. For low- and middle-income countries with underdeveloped healthcare infrastructure, the reality is painful. In most of these countries, access to Trikafta and other CFTR modulators is almost nonexistent. As the Globe piece notes, Vertex has set up a pilot program to donate free Trikafta to people with CF in 12 low-income countries.

For lower-income countries, there are non-trivial questions worth answering. Trikafta prescriptions require a CF diagnosis, genetic screening against eligible CFTR mutations (about 90% of CF patients are eligible for the drug), and ongoing liver function monitoring. Who will manage this end of healthcare delivery? Should it be Vertex? 

Funding access to lifesaving meds 

Merck once wished to donate ivermectin to African countries to treat river blindness, a disease spread by blackflies. But the company discovered that simply shipping a free drug would make little impact because the healthcare delivery infrastructure and logistical system wasn’t prepared to receive and distribute the medicine where it was needed. So Merck set about building that infrastructure in collaboration with the WHO and local community organizations. As a massive global organization, Merck could feasibly embark on such a mission. Gilead has made similar moves with its hepatitis C drugs and viral elimination programs. Should every biotechnology company be expected to solve these challenges, with each disease posing its own obstacles (e.g., genetic testing in case of Trikafta)? 

I can think of at least two ways to overcome Trikafta’s access challenges in the developing world: 1) Nonprofits raise money to buy the drug from Vertex at the cost of production (which isn’t cheap… the Globe ballparks $6,000 per patient per year) or 2) Vertex incorporates the price of paying for and distributing the drug in lower-income countries into what it charges for the drug in wealthier countries and goes about the protracted process of building the necessary diagnosis and distribution infrastructure.

The first approach is fantasy. No such organization exists. The WHO is (rightfully) concerned with malaria, tuberculosis, and other major killers in low-income countries. Rare diseases require different coordination and execution mechanisms than exist in most global health organizations. It’s going to be a long time before local NGOs are able to manage orphan diseases in those countries. 

So that leaves asking Vertex to do it, like Merck did with ivermectin or like Gilead with HCV. Imagine screening for cystic fibrosis in low-income countries, paying for genetic testing, and then making sure that every patient reliably gets Trikafta forever. (Keep in mind that a patient must only take one annual dose of ivermectin, and that Gilead’s once-a-day HCV pill regimen lasts only for several weeks, but Trikafta is a twice-daily pill that must be taken for life.)

It is undeniably true that people with CF living in countries with underdeveloped healthcare infrastructure deserve the opportunity to achieve better health, which is precisely what Trikafta offers. These patients and their families know this drug exists and yet it is beyond their reach at the moment. So how do we get it to them?

Would it be possible to bake the cost of Trikafta distribution to these patients into the price paid by the US and other wealthy nations? In theory, yes. But many in the US and other wealthy nations think Trikafta is already overpriced. The court of public opinion sees a >$300k/​patient/​year US list price (though Trikafta’s net price is much lower, closer to $200k) and assumes it’s too much (though analysis of Trikafta’s cost-effectiveness suggests society gets the lion’s share of the drug’s value). Americans see lower prices in other countries and assume the drug should be priced like that in the US. So it’s no easy thing to just jam one more expense under Trikafta or any other drug. We have to first contend with the public’s shrinking tolerance of the high prices they see companies charge for novel medicines.

A failure to communicate

The problem is that the world doesn’t intrinsically understand how to think about the societal value of a new medicine and misses what a raging bargain we’re actually getting on Trikafta. Most people don’t instinctively understand the economics and finance of innovation, let alone the complexities of clinical trials and early-stage drug development. That misunderstanding drives the rhetoric about Vertex’s greed in the Globe article (which is relatively benign – you don’t have to search very hard for other stories that are much more scathing). 

Before Trikafta, people with CF lived short, painful lives with their families and society spending a fortune on their hospitalizations. Hospitals don’t go generic – their costs only grow. But Trikafta changed all that, restoring people to remarkable health, allowing them to lead productive lives, and keeping them out of hospitals, saving money today. And in a little over a decade, Trikafta will go generic and likely drop in price by over 90% as competitors enter the market, further contributing to society’s savings. Finally, Trikafta contributes to our collective peace of mind, because CF will never again be quite as scary as it was. That peace of mind is also worth a lot. 

It’s as if society is rapidly paying off a mortgage on this breakthrough. By contrast, hospitals and disability and early mortality represent a permanent and rising rent expense that we leave to our children and grandchildren – unless we invent our way out from under a disease like this, as Vertex has. 

Some will object that Vertex had help developing Trikafta. Yes, taxpayer-funded NIH research is important to our understanding of many diseases and the CF Foundation provided some important funding to jumpstart the early R&D that led to Trikafta. But it was still the expectation of future profits from the sales of Trikafta that allowed Vertex to raise the billions of dollars from investors that made it possible for the seeds of Trikafta to grow into the actual medicine that’s saving lives today. Some think profits are an obstacle to affordability, but they are necessary to incentivizing the investment that brings these medicines into existence in the first place. 

Through proper insurance, profitable treatments can be affordable to everyone who needs them. In fact, investors know that drugs couldn’t possibly be profitable if most patients couldn’t afford them via their insurance. It’s only because of insurance that we have the biomedical innovation that we do. As a society, we provide funding to innovation through our taxes, charitable donations, and, to attract private sector investment, via our insurance premiums so that insurance can cover the drugs worth covering. It’s important to see the totality of this and not zero in on just one funding source as being all-important. 

So just as the public doesn’t recognize the full value of medicines, it doesn’t see the big picture of how biomedical innovation gets funded. The fact remains that Trikafta actually is worth far more to the US and to the world than its seemingly high US price. And only when the American public appreciates that will it become possible to ask Americans to not only pay for Trikafta for their own benefit but to also subsidize the delivery and distribution of free Trikafta to lower-income countries – and take pride in doing so. 

But as things stand, if companies think that they can win American hearts and minds by just distributing their drugs in lower-income countries, they are being painfully naïve. Americans are perfectly capable of both celebrating such generosity while condemning the companies for not being as generous in the US. Americans are generous when they choose to be, but that’s a hard choice when they aren’t inspired to understand their role in making affordable innovation possible at home and in helping patients in low-income countries. 

Science is awesome. NIH is awesome. Yet in the public’s mind, drug companies suck – they just charge high prices and deprive people of the treatments they deserve. And so all else being equal, Americans offer their votes to whichever politician offers to hurt the biopharmaceutical industry, politicians who either don’t realize or cynically ignore that they are cutting off America’s own nose to spite what is actually its own face.

Every intense publicized ​“high-priced” drug launch like Trikafta’s makes it less and less likely that all the medicines that are still in the R&D pipeline will ever see the light of day. Innovation doesn’t build on itself but is at risk of becoming zero sum. 

And you know what? It’s our own fault. 

It’s up to the biopharma industry to put in the effort to keep our customers on our side (and therefore on their own side) and always show the value that our products offer to them and inspire them to feel like they have a personal stake in our quest to improve humanity’s healthy lifespan (i.e., healthspan). The trouble is that our industry doesn’t even know who its real customers are. 

Our customers are not just the patients who use our medicines, nor are they the payors who buy them. Our actual customers are the mostly-healthy people who pay more into their insurance plans than they take out. Roughly 10% of everyone’s insurance premiums go towards paying for branded medicines. That accounts for all biopharma’s revenues and results in incentives for investment in R&D. Unless our customers are inspired to understand the value of medicines and appreciate how difficult it is to discover them and get them through testing to the market, it’s unsurprising that they would support efforts to pay less for them (e.g., voting for politicians touting price controls), not realizing that in doing so, there’ll be fewer new medicines in the future. 

We market our successes – the drugs we launch – to the small sliver of our customers who are patients today. We don’t engage the vast majority of our customers with messages that might interest them, like the fact that their money is fueling some amazing quests… hundreds of Apollo missions… to cure cancer, slay Alzheimer’s, prevent blindness, and more. We’re not promising immortality, but it’s not crazy to aspire to a world in which a newborn can look forward to a healthy, productive, and active hundred years. That’s a hell of a vision to rally around. 

And, ironically, it’s often left to patients and patient advocates who, in the name of access, end up having to bang this drum. They are forced to share intimate personal details about their lives, their health, and the impact individual drugs are having on their own lives. In more ways than we care to admit, the industry’s reputation is left in the care of the few patient advocates who are willing to speak up. Too few have the understanding of economics and finance to make the case that Trikafta is a bargain. Many come off sounding conflicted, saying they need the medicine or people they love need the medicine but that it’s price seems high and that maybe since the CF Foundation pitched in, it should somehow be cheaper. Our industry must better communicate how it creates value for society with the help of the rest of society.

Thinning tolerance

Like many companies, Vertex launched Trikafta fairly conventionally. It assumed broad coverage by US payors who indeed covered the drug. Where there were high out-of-pocket costs imposed by insurance plans, Vertex helped patients pay for those costs (and many patients assumed it was Vertex’s duty to pay those out-of-pocket costs, without considering the injustice of insurance charging those costs in the first place). And billions in revenue flowed in. Seemingly the innovation-reward framework worked for Vertex. But Trikafta also was one of the first drugs to be targeted for price controls by a state prescription drug affordability board (which patient advocates were able to avert), a sign that the innovation framework was rotting.

Whenever we launch a life-changing new drug at what the public deems to be an unreasonable price, we erode a little more of the tolerance society has for the economic framework that makes innovation possible. When we just assume society will keep paying, through premiums and taxes, for each new treatment, we come closer and closer to the point when society will say ​“enough” and do itself harm with price controls and/​or patent waivers. And when discontent boils up, we play whack-a-mole to quell individual issues drug-by-drug and state-by-state (see the campaigns against: PDABs, the QALY, and whacky insurance schemes), when we could be systemically restoring the industry’s reputation and converting waning tolerance for ​“high drug prices” into a lasting understanding of how biomedical innovation is actually both Mars-mission cool and unlocks tremendous value.

Every company that succeeds in developing a new great medicine must therefore restore that tolerance, gird the framework, and ideally inspire society to cheer for that medicine and take pride in knowing that a tiny bit of the insurance premiums we all pay make that innovation possible. That’s the communication strategy we must pursue.

Successful innovators who don’t make this effort to engage with our true customers are only partial heroes. Sure, we can celebrate their scientific prowess. But in their wake, they leave an angrier public, a negative externality for everyone else to deal with. Their successful innovation comes at the expense of the innovation to follow. They are the current winners of a zero sum game. Now we know better.

Vertex and others should be approaching this problem systematically through a two-pronged marketing campaign that 1) redirects public outrage, like a lightning rod, to the injustices of high out-of-pocket costs foisted on patients by insurance plans and 2) inspires the general public with the boldness of our collective quests and rallying people behind the value we create for everyone when we succeed.

Marketing campaign #1: The out-of-pocket outrage lightning rod

Start with out-of-pocket costs. Imagine videos like those put out by Power to the Patients in which celebrities call for transparency in hospital costs, except calling out the injustice of out-of-pocket costs. What’s this moral hazard that some think we need to solve with financial ​“skin in the game”? Who fakes cancer to joyride free chemo? Who feigns CF to score Trikafta (besides, remember the screening to make sure people with CF have treatable mutations)? What is the utility of charging even $5 let alone $35 for insulin? Do payors think someone is pretending to have diabetes so they can inject themselves daily with a drug they don’t need? Through No Patient Left Behind, we’re in the early stages of creating such a video. Help would be welcome.

What’s toxic to innovation is when insurance can claim that it covers a drug but burdens patients with high out-of-pocket costs, leaving them with the impression that their drugs are unaffordable because companies charge too much. They then see lower prices in other countries as proof that drug prices here should be lower. What insurance does is clever, but it’s false advertising.

We must remind the public that everyone is entitled to truth in insurance (not unlike how Power to the Patients calls for transparency of hospital prices). If insurance doesn’t want to cover a drug, it doesn’t have to, but it should be upfront about its choice. At least it will be clear to everyone that a person’s failure to get a medicine is because their insurance rejects coverage, and everyone can decide for themselves how they feel about that decision. But if insurance says it covers a drug, then it should cover it with a low – though really zero – out-of-pocket costs so that every patient can afford appropriate treatment. When we have insurance reform in the US and lower the out-of-pocket costs that plans can impose on treatments they claim to cover, leaving no patient behind, we will temper some of the public’s misdirected anger at the drug industry. 

You might ask, ​“but won’t making medicines affordable for all make premiums more expensive for some?” Yes, it would. By a little bit in the short run; probably less than the amount that insurance goes up most years from just rising hospital and services costs. But if we’re going to pay for insurance, we should be paying what it takes to get proper insurance, not false advertising; there’s really no point in paying a little less for a lie. 

The idea that we can choose to pay more for innovation or pay less if we’re willing to go without innovation is false. If we don’t invent medicines, we’ll just end up spending more in the long run. The only way we can look forward to longer, healthier, and more productive lives is if we invent our way out of increasingly expensive hospitals and nursing homes.

Fixing insurance so that it works for everyone is the only way to reduce America’s anger. Because the real choice is between paying a bit more in premiums to lower out-of-pocket costs for patients, preserve innovation, save money, and increase productivity in the longer run… or keeping the status quo and watching as America’s outrage over out-of-pocket costs continues to be misdirected toward price controlling novel medicines and then end up less healthy, less productive, and spending more on hospitals. 

We can make that choice easier if Americans are inspired by the quests and societal value made possible by the small fraction of their premiums that goes towards medicines.

Photo by reza jahangir on Unsplash

Marketing campaign #2: Market our quests

Even after we win insurance reforms that lower out-of-pocket costs, some may still wonder whether we’re collectively overpaying for drugs. And so it’s important to inspire the public, our true customers, with our shared mission to vanquish disease so that people are proud of funding our quests. The Pfizer Superbowl ad and Lilly’s Better Medicines campaign help show the way. We shouldn’t market just our successes through typical DTC advertising. We have to show them the whole story. 

Politicians don’t often suggest defunding NASA to balance the federal budget because the public is inspired by moon missions and even the quest for Mars, regardless of how little benefit people on Earth actually derive from such pursuits. What we pay in taxes that funds NASA then provides the fuel for companies like SpaceX and others. Every exploding rocket on television draws us into the challenge of these quests. We want to succeed because the problem is hard. It’s a struggle.

Americans resent that other countries pay less for medicines and politicians here offer to close the gap with drug price controls. But Americans also pay much more in taxes to fund our military than other countries spend on their militaries. It’s the US navy that patrols the world’s oceans, making transport safe and keeping costs down for consumers globally. What we spend on our military keeps the costs down of all the stuff we buy on Amazon from China and keeps everyone else’s costs down, too. But do politicians offer to defund our military? No. Our politicians call out other countries for their freeriding and urge them to spend more on their militaries to help share the burden of global security. Why?

Because Americans appreciate their servicemen and servicewomen. We say thank you. We expect them to be invited to board flights first. We recognize that they protect all of us from foreign threats. We’re inspired by the bravery of our men and women in uniform.

But what is disease if not a foreign threat? Other countries freeride on the fact that America spends what it takes to fight disease. Yet, America lacks the confidence in the value of what it’s paying for to hold others accountable for their freeriding. 

The public loves to cheer heroes on in their struggle towards a noble goal, and we have a hell of a hard and noble mission. All of us engaged in biomedical innovation know that our successes don’t come without struggle. Every experiment is a battle with the enemy. Every trial is a rocket launch. We have stories to tell. We have explosions to show. 

But we suck at both the telling and the showing. We just tout the wins because all of our industry’s marketing and communications talent and spending is wrapped up on the commercial side of companies. We don’t know how to market our struggles, only our successes. And so Americans are neither inspired by nor appreciate the biopharmaceutical industry or its people.

Our industry has for too long assumed that the public loves us because we generate a societal benefit, so we didn’t invest in inspiring the public. We just charged them for the fruits of our labor. We assumed that because they were willing to keep paying that they must understand and appreciate the value of what we were doing, that they were fans. But it turns out we assumed wrong. 

Our customers haven’t been consciously paying for the benefit we provide to them. How do I know? Because just as with NASA’s funding, they pay for inspiration, not benefit. We support space exploration not for our benefit but because we’re inspired, while our medicines offer real benefit but Americans support price controls that politicians are busy delivering. Honestly, how bad at this can we be? 

Turn haters into fans

Our industry spends billions of dollars on DTC advertising marketing our successes to an audience that hates us. Imagine if we spent even 1% of that not on marketing specific drugs (which is still important) but marketing our struggle, giving the public a stake in the quest and a sense that it’s their quest, too. If we turned our haters into fans, then maybe the other 99% of our marketing spending would go further. 

Sports shows us how you make fans. You don’t play games in secret and then market the hell out of the score and who won the game (which is what we do when we market our approved drugs). You bring fans into the game and take them with you on the journey. You tell them about the players. You share their backstories. Your fans see you lose. They see you get injured. They see you in anguish over failure. They see the players’ grandparents and parents in the stands, praying, hoping. As parents, we empathize. Because we all struggle at something and feel pain and loss when we suffer setbacks. And so when we win, there’s meaning to it. There’s vindication. When your team wins, you win. And then it’s on to the next game, the next season, the next struggle. 

And it’s not just sports. Our industry could learn a lesson or two about creating fans from music, film, fashion, entertainment, and even books. 

Why doesn’t it say ​“Merck” on every bottle of generic lisinopril or Pfizer on every bottle of generic atorvastatin? Those are the top prescribed drugs in the United States, in tens of millions of medicine cabinets. Instead, it says Lupin or Sandoz or Teva. That’s as if Jane Austen’s name were stripped from Pride and Prejudice and it just said Penguin Classics. But authors aren’t deleted from the covers of their books when copyright expires. So why haven’t we fought to keep the names of innovators on our medicines after they go generic? It’s doable. It would take a small tweak to FDA regulations. Then maybe more Americans would associate innovators with all the really inexpensive medicines that save their lives every day and not just the new and expensive ones they see advertised. 

We need to give our scientists names and faces. And we need to remind communities that they are pharma. With all the remote work, there are probably members of the biopharmaceutical industry living in just about every major community and many smaller ones in the country. And they have relatives everywhere else. Pharma is not some remote industry someplace else doing bad things… it’s where your friends and family work to roll back the tyranny of disease and aging.

We need to make it personal. Disease is always personal. Every healthy person knows someone directly impacted by our industry’s breakthroughs. It’s one thing to get mad at ​“evil pharma” in the abstract. It’s another when your friend, family member, or coworker is able to live a better, healthier life because of the work we do. But that insight is obstructed by outrage at what these medicines cost because insurance isn’t living up to its promise.

Where is the ad that shows a grandmother saying ​“My granddaughter works for a pharmaceutical company making new medicines for me and others who suffer from [disease]. I’m proud of her. And I trust my insurance will make it affordable for me. Otherwise, what the heck have I been paying those premiums for all these years?” 

Photo by Anthony DELANOIX on Unsplash

Beyond marketing, do the right math: Pedestals not guillotines

Lastly, companies have to make the case for the societal value of their medicines, to show they really are worth the temporarily high prices they command while they’re patented. They can tell stories with pathos, as they have, but they should also do the math, which is profound when done rigorously. 

Because others will say ​“but I did some math and this drug isn’t worth its price.” In Europe and Canada, such math is law. In the US, it’s not yet law. But that message has an insidious effect on people, making them wonder ​“can the math really be wrong?” Turns out, yes. It can be absurdly wrong. The math that other countries use to calculate what a medicine is worth ignores that drugs go generic, that they can help restore not only a patient’s productivity but also that of a family, that they reduce risk for people don’t even have the disease (e.g., we all are more relaxed about getting scrapes because we know we have antibiotics), and many other properties of medicines that we all value. 

Before other countries will agree to reimburse a new medicine, some require that a company’s own health economists submit estimations of the drug’s value that use the mathematical equivalent of a guillotine; you plug a drug’s properties into the conventional equations required by those countries and the math chops off a ton of its actual value, which is why so many of these analyses conclude that a drug isn’t worth the US price. 

But it’s possible to instead run more comprehensive math to build a pedestal that showcases a medicine’s societal value. Drug companies, from the moment they have Phase 2 data, should be directing their health economists to do these comprehensive analyses to tout the societal value they are working to create, keep refining their models with more data as the trials progress, and promote the drug’s value on the day it launches, as Eisai did when they got their Alzheimer’s drug Leqembi approved. 

Drug companies should stop thinking of their health economics teams as secondary box checkers who handle the annoying but supposedly necessary guillotine math (conventional CEA) required by other countries but not by the US. Instead, companies should put their health economists front and center in marketing the value of medicines to the US using the proper, more comprehensive math. We call this generalized cost effectiveness analysis (GCEA), and you can learn more about it here. While it’s not required by the US market (yet!), it’s better to be proactive in making the case for the societal value of our work using GCEA so that the US doesn’t resort to central planning via price controls on novel medicines.

It’s true that the math is wonkier than any non-economist wants to hear but it’s an important part of the case we have to make that our medicines are worth far more than what companies have historically charged for them. And while GCEA math is complex, we need to use plain English to bridge the gap to the public and anti-innovation policymakers, especially those from biotech hubs.

The absurdity of Massachusetts and California (and other biotech hubs)

State government officials, even officials in states that rely heavily on that innovation economy, have an interesting relationship with innovation. Even when their own party calls for drug price controls (Democrats call for Medicare ​“Negotiation,” Republicans call for International Reference Pricing, which is really just importing European price controls to the US), they love the jobs that the biopharmaceutical industry brings to their states. They proclaim their pride in their state being home to so many innovative biotech companies.

They compete with other states to offer tax breaks and subsidies to attract companies but then send representatives to Congress to vote for price controls on novel medicines. No amount of tax breaks and subsidies will preserve innovation if our customers stop paying enough for innovation.

It’s hard to blame the politicians. The public often favors facile solutions, and it’s hard to turn down those easy votes. If the public were calling for insurance reform instead of price controls, politicians would focus on insurance reform.

Like companies themselves, state governments have a role to play here. States have economic development budgets and they have marketing and communications professionals on staff and on retainer. Uniquely, they can convene their state and federal representatives to really examine what kind of policy will solve affordability while preserving their own innovation economies.

Massachusetts in particular has some of the best health insurance laws in the country. The original ACA, with its mandate that everyone have health insurance, was modeled on policy in Massachusetts (the ACA was once called ObamaCare which was modeled on RomneyCare). So Massachusetts can continue improving insurance, examining whether out-of-pocket costs even make sense for many medicines. 

Consider drugs that insurance only covers after a doctor completes a prior authorization form and the plan affirms that the drug is right for a patient – why are patients then still made to pay anything out of pocket before getting that treatment? They paid for it during all those years when they paid their premiums, so why, when it finally comes time for insurance to honor its promise, are patients on the hook for more than they can afford (or anything at all) for an appropriate treatment? Isn’t that false advertising? Isn’t that a con? 

Let’s ask those questions at the state level. The answers should lead us to necessary state-level insurance reforms, like the pandemic-era zero out-of-pocket costs mandated for COVID-19-related care. Powerful solutions would ideally be adopted federally, making their way to the rest of the country.

What biotech companies in any state need most is the confidence that their true customers, which is to say all Americans, can be relied upon to continue to pay for that innovation. To protect their own innovation economies, these states should be marketing to all Americans and certainly their own voters the value that biomedical innovation offers and the pride they can take in contributing to it through their taxes and the mere 10% of their insurance premiums that goes to new medicines.

And yet, states with a massive stake in keeping the public inspired to support innovation like California and Massachusetts, send some of the most anti-pharma legislators to Congress who do their damnedest to undermine innovation. And some state legislators are empowering PDABs to impose aggressive state-level price controls on novel medicines based on their prices without regard to their value. Our representatives should be instead calling for insurance reform to lower out-of-pocket costs.

So states would do well to shunt some of their dollars from innovation subsidies to a campaign that inspires pride in our shared quests to vanquish disease and the understanding that we all make innovation affordable through our premiums and taxes. That effort could restore the public’s waning tolerance for ​“high” drug prices by illustrating what those costs actually buy. 

And states should convene their state and federal representatives to decide what kind of policy actually makes sense to preserve affordable innovation. Those policymakers who continue to tout anti-innovation policy ought not to be winning re-election as representatives of pro-innovation states. If they do, state governments should see it as their personal failure to align their populace with their best interests and try a lot harder. Until then, talk of tax breaks and subsidies is just an excuse to not do the hard work of inspiring the public to remain paying customers of innovation.

We need to inspire

So I urge Vertex, all other companies, and state governments to shore up the framework that enables affordable innovation. Let’s inspire the public to recognize that they have a role to play in the grand quests of our time, that medicines are valuable (calculably so for those into the math), and that ​“profitable” needn’t mean ​“unaffordable” for anyone as long as we reform insurance by capping out-of-pocket costs.

This will be new and strange to many, but innovation is all about figuring out how to solve problems. In this case, we need to figure out how to engage our customers and inspire them to preserve the affordable innovation framework that will ultimately also scale breakthrough medication access globally. Only then will politicians stop trying to win votes by offering new ways to tear that framework down.