Ten Ways to Talk Back to Big Pharma
Updated: Feb 4
My daughter called it a "niche dad obsession" last year, back when she was in high school. Now that she's in college, learning a thing or two, she thinks that maybe my interest, in the way prices for life-saving and life-extending prescription medications are set, is a grassroots public policy quest worth joining. Especially for herself, as a person with cystic fibrosis who hopes to lead a long and successful life, as well as her friends and acquaintances who also have CF as well as other health conditions.
So, the other evening I was brought up short when she asked me: "What should I tell people to do? Donate money?"
The people in my daughter's network hear the Big Pharma propaganda -- but they don't hear it from Big Pharma. Instead, the drug companies create "astroturf" (i.e., fake grassroots) groups like the Alliance for Patient Access. In the CF realm, the big kahuna of pharmaceutical firms (Vertex) enlists celebrity patient advocates to do their bidding. I'm talking about people like CF parent Siri Vaeth of Cystic Fibrosis Research, Inc. (CFRI), CF patient Gunnar Esaison of the Boomer Esaison Foundation, and CF patient Emily Kramer-Golinkoff of the nonprofit Emily's Entourage.
All three represent organizations that benefit from Vertex's largesse. And all three have been sharply critical of the analysis developed in public by the nonprofit Institute for Clinical and Economic Review (ICER) showing that Vertex's flagship miracle CF drug, Trikafta, is vastly too expensive at a list price of $312,000 a year. In a better world, the government would analyze and even set prices of prescription medications, but in the U.S. it falls to an independent nonprofit like ICER to do this work across a broad range of diseases and treatments.
As an elevator speech, the case for idealistic youth with CF to support ICER and reject the Vertex-induced criticism of people like Vaeth, Esaison, and Kramer-Golinkoff can be difficult to make. But my daughter is ready to try. She just needs some help with suggesting some alternatives. Here are some ideas.
1. You could, of course, donate money to ICER or the grassroots advocacy group Patients for Affordable Drugs (P4AD). Each is a 501(c)(3) nonprofit, so contributions to both are tax-deductible. But -- and here I hope my friends at ICER and P4AD don't get too mad at me -- I'd prefer to see charitable dollars flow at the grassroots level to organizations like the CF Foundation and Emily's Entourage. Both are working hard to deliver a cure for all CF patients, still an elusive goal, and even though I disagree with Emily about ICER I still think her eponymous organization is doing important, support-worthy work on behalf of the ten percent of CF patients (including both Emily and my daughter) who have so-called "rare and nonsense" mutations that the currently available Vertex medications do not help.
2. Educate yourself about how we set drug prices in the U.S. I'm partial to "A Prescription for Fair Drug Prices," an eight-episode podcast series produced by ICER. Although it's actually pitched to physicians, the premise seems to be (and it sure seems valid) that most physicians are ignoramuses when it comes to matters of economics or public policy. Steve Pearson, the doctor who runs ICER, is really good at explaining complicated things to people who want to learn about them. The podcast is available via the usual sources (Apple, Spotify, etc.).
3. Sign up with Patients for Affordable Drugs. They'll keep you posted on efforts to keep drug prices under control and alert you to specific opportunities to help them. I like their menu of solutions: Let Medicare negotiate lower prices with drug companies. Speed up the availability of lower-cost generic versions of drugs. Force Pharmacy Benefit Managers (hello Express Scripts!) to stop negotiating secret deals and, instead, transparently pass those discounts on to patients. Require drug companies to disclose how they set prices. (I really like that one so I will repeat it: Make the Big Pharma monopolists come clean about how it sets prices!) Make sure that drugs based on science paid for by taxpayers [and, as an aside, also donors to the CF Foundation] are priced to assure affordability and accessibility. Read their excellent report issued in February 2021, "Big Pharma's Big Lie," because it's both succinct and substantive.
4. Write your Senators and Representatives and ask them what they are doing to keep drug prices under control. You'll get an answer that will, at the very least, give you some notion of what your federal legislators think Congress and the new Biden Administration are up to on this front. Use the responses you receive to do some googling so that you can evaluate what they say skeptically. Lots of politicians, across the spectrum, receive major donations from Big Pharma, which is something to keep in mind. Whether it's a Member of Congress or an organization that seems to be saying the right things, keep track of whether they walk their talk! If a group or a politician states that drug prices are too high, but seems to oppose every good-faith effort to address high drug prices, your antennae should go up.
5. Keep track of what you're paying, and what your insurance plan (including your pharmacy benefit manager, if you have one) are paying, for the prescription medications you are taking. Knowledge is power! Remember that even if your out-of-pocket costs are relatively limited and/or you don't have any trouble paying them, the total costs being shelled out by your insurance plan are being paid for by everyone who is a member of the plan. Think about what that means for the community of people who share your insurance coverage.
6. Make sure your healthcare providers, especially your doctors, know how much it costs to use the medications they prescribe for you. If you are having trouble meeting your out-of-pocket costs, and especially if you can't afford to take all of the medications your doctor is prescribing for you, tell them and ask for their help! (Note: If you are a CF patient, you can also reach out to the CF Foundation's patient-assistance Compass program.)
7. Keep an eye on the companies that make the drugs you take, especially the expensive ones. Google them, check out their web sites, look at the public policy arguments they're making and the groups they are sponsoring.
8. Go on the ICER web site and see if they have analyzed any of the drugs and therapies available to people with your health condition. For example, their recent report on the Vertex modulator drugs for CF patient contains a wealth of information about the disease, its treatment, and the costs of that treatment. Learn what a QALY (quality-adjusted life-year) and an evLYG (equal value of life-year gained) are and why these concepts are important in determining the value of prescription medications. QALY is a controversial metric, so look into the criticism too!
9. Fight like hell to defend and strengthen the Affordable Care Act. You don't have to take my word for it; just ask every major healthcare charity in the country, including the CF Foundation.
10. Be a global citizen. Find out whether the medications you depend upon are readily available around the planet. If you're part of the CF community, check out Vertex Save Us.
[Slight revisions made on 2/4/2021.]