In nature, thickets are dense growths of bushes and trees. Man-made versions – called patent thickets – are strategically constructed. They take deserved protections for original innovation to an inappropriate level. Patent thickets contribute to high drug prices. I have a collage on the topic included in The Illustrated Accordion, an open show at the Kalamazoo Book Arts Center (KBAC). It runs from February 2-March 14, 2024 in the KBAC gallery, and online.
Curious about patent thickets? I highly recommend “Why Pharmaceutical Patent Thickets Are Unique” by Michael A. Carrier and S. Sean Tu. Their research paper explains the role different types of patent thickets play. It provides a helpful basis for understanding current legislative and FTC efforts. It is forthcoming in the Texas Intellectual Property Law Journal. As for the FTC, The Washington Post’s January 25, 2024 “The Health 202” newsletter segment by Elisabeth Rosenthal and McKenzie Beard points to how patent thickets are tangled in policy debates right now.
Walking under the Winterdale Arch in New York’s Central Park last Sunday I thought about access to medicines.
Bridges exist to provide access. This is a public park. Today it’s alive with runners, baby strollers, handsome dogs, musicians and clusters of pedestrians. The red brick background of this bridge is sprinkled with white crosses. The pattern reverses the Geneva Convention-era red cross on a white background designating protection for medical sites. But the proportions of the crosses, and the colors still carry the association.
I want every space to be a protected space when it comes to essential medicines. The crosses winking from the underskirt of the Winterdale Arch are a subtle public health reminder. A life with chronic illness is a life of patterns – patterns that maintain and patterns that disrupt.
It also reminds me of the installation “First Aid: Homage to Joseph Beuys” by the late Susan Hiller which was in the Paraconceptual exhibit hosted at Lisson Gallery in 2017. I enjoy the way “First Aid” is both precious and utilitarian. These first aid kits look ready to deploy. The installation assembles vintage medical supplies and bottles, felt-lined wooden first aid boxes and water from sources considered to be holy.
We cannot tell which bodies moving under and across the bridge today need essential medicines. The toddler dropping a soccer ball could be wearing a continuous glucose monitor. Which backpack, pants pocket or wicker picnic basket holds an EpiPen? Which people are yet undiagnosed for which diseases? Who just got unnecessarily kicked off of Medicaid? Who is praying for PEPFAR (the President’s Emergency Plan for AIDS Relief) to be reauthorized? We cannot see the thousand worries but they form patterns, too. We can do this better. We can.
You’re not alone if you only associate tuberculosis with Victorian novels (consumption) or a routine, pre-employment skin test for school bus drivers, home health aids and others in proximity to vulnerable populations. It is still the world’s top infectious killer. Often, depending on the geography or context, it is considered too expensive to treat. Nonsense. We have the means to stop it. Read the October 1, 2023 Partners in Health statement about the decision by Johnson & Johnson not to enforce bedaquiline patents. To say this is a big deal is a phenomenal understatement. This drug is significant in fighting multidrug-resistant tuberculosis (MDR-TB).
Anna Gordon's July 20, 2023 Time article, "How an Innovative Deal Will Give Millions Access to Cheaper Tuberculosis Drugs" offers a useful description of the present dangers of this ancient disease. She also covers author John Green's social media activism to lower the price of test cartridges. Here’s a recent interview with Green on the podcast series An Arm and a Leg: “The Fault in our Patents: John Green vs. Johnson & Johnson" Part 1.
I recommend a very fine essay by Anna Talley about the history of the design of tuberculosis posters published in May, 2020 by Design Observer, “Pandemic Design: What Tuberculosis Posters Can Teach Us About Community.”
Learn more, of course, from the Centers for Disease Control and Prevention (CDC). My own response, below, references the late Paul Farmer’s mantra on the attitude of scarcity, which holds us back from solving so many public health dilemmas.
We’re socialized for scarcity for other people… Dr. Paul Farmer
This ancient mother of disease –
still our top infectious killer –
can be cured and treated when we please.
One more pharmaceutical tease.
Who gets to test? Who gets to stop her,
this mother of disease
mysterious for centuries?
Ambivalence infects now, stealthy and pure.
TB can be treated when we please.
Scarcity for others, decided with ease
became a global pillar
for this modern mother of disease.
It’s a matter of priorities.
Why not see it as a thriller?
We can cure. We can treat it when we please.
Governments, people, companies
can absolutely still her.
This mother of disease
will be cured when and if we please.
Thank you to everyone who joined us under the Square in Gettysburg at Waldo's & Co. on the evening of August 4 to open the Skyrocket exhibit. I am grateful to Chris Lauer, Director, and his team at Waldo's, to Don Redman for photography, to my brilliant gallery-talk presenters Rukhsana Rahman, MD and Lisa Erdman, MFA, DA, to Peter Kuhn, to Susan Muldowney and to the Lancaster T1D Grandes Dames.
Access to medicines is an issue that finds its way into many of our healthcare stories. It is clinical, personal, and political. Made in the spirit of public health and medical humanities, these eight mixed media collages reference formulary exclusions, pharmaceutical industry lobbying, and the skyrocketing cost of prescription drugs. We can do better. Really. As a poet I find that certain things ask for visual metaphors. That is how and why these pieces came to be. I appreciate the chance to exhibit them in the Waldo’s Gallery.
I appreciate every person and organization working to make medicines accessible. All efforts matter - from the subtle to the spectacular.
Waldo's & Co., a wonderful coffeehouse-arts collective in Gettysburg is hosting an exhibit from August 3-27, 2023. Join us for the opening of Skyrocket: What drug prices do on Friday, August 4 from 6:00-9:00pm.
Patent thickets are multiple, deliberate filings for the same product. In their January 25, 2023 opinion piece in The Hill, “Patent Reform and Lower Drug Prices Should be Bipartisan Priorities,” Tahir Amin and Priti Krishtel press for updates that foster, rather than deter competition in the drug patent process. This mixed media collage is from a sketch series on how thickets start in nature and in the United States Patent and Trademarks Office (USPTO). The overuse of thickets is one of the practices needing attention.
One night in the first week of January I was walking in the pedestrian zone in Colmar, France. I saw this sign for a Pharmacie du Soleil bathed in green light. It is the exact green of “go” – of traffic lights illuminating your turn, of universal permission and “yes.”
The words "pharmacy" and "pharmaceutical" often signal the opposite: “no” and “not that quantity” and “not that specific medication.” We experience the stop signs of formulary exclusions, insurance and PBM denials. The visual juxtaposition alone is wildly welcome. May we move through the rest of 2023 with momentum. The ongoing efforts of Advocacy groups, and some bipartisan bills in the works offer hope.
After reading Ed Silverman’s “Caught in the Middle’: A Battle between Vertex and Insurers is leaving Cystic Fibrosis Patients with Crushing Drug Costs” from Stat News I felt Shakespeare’s words and Seabiscuit’s race weight. Patients, their physicians, and advocates are waiting and asking their own sets of “what ifs” as 2023 unfolds.
The irony here is sharper than usual because the carcanet of drugs that secured the company’s current profits and reputation exists because of massive early-stage nonprofit funding launched by patient families. To learn more, read Silverman’s article and, for the backstory, Bijal Trivedi’s excellent Breath from Salt: A Deadly Genetic Disease, a New Era in Science, and the Patients and Families Who Changed Medicine Forever here.
Robin Bates included this poem in his blog Better Living through Beowulf's March 27, 2023 post. I had to invoke the Bard.
Shakespeare Addresses Vertex Executives
Rascals. Wallet-pressing blockheads.
Ye did not build this alone.
Reconsider. Be your brilliant selves instead –
not rascals, not wallet-pressing blockheads.
Reconsider! Be your brilliant selves instead
of nook-shotten, overblown
rascals. Wallet-pressing blockheads,
Ye did not build this alone.
In good weather we don’t think about sidewalks. We run, ramble, push strollers and walk our dogs, taking no more notice of the sidewalk’s surface than the air we breathe. When a wicked winter storm encases the concrete in ice, we notice. Have you ever stood on ice so thick it was beyond salt and your best shovel? Ice that made your familiar front steps inaccessible? That’s what it’s like for some patients and their treating physicians caught in the prior authorization process with insurers.
In a January 30, 2023 piece in The Washington Post, Carolyn Y. Johnson describes her experience trying to get approval for anakinra, a drug to treat her son’s rare type of childhood arthritis called systemic onset juvenile idiopathic arthritis, or sJIA. See “I Wrote About High-Priced Drugs for Years. Then my Toddler Needed One.” A few days later, on February 2, ProPublica published an article about Penn State University student Christopher McNaughton, who has severe ulcerative colitis. See “UnitedHealthcare Tried to Deny Coverage to a Chronically Ill Patient. He Fought Back, Exposing the Insurer’s Inner Workings” by David Armstrong, Patrick Rucker and Maya Miller.
The relief of finding an essential medication that works, only to have it become financially unavailable is exactly like this. We can do better.
January launches a fresh calendar year and all kinds of announcements. These may include updates from your insurer's drug formulary.
Pharmacy benefit managers (PBMs) inform you of medications which may have moved to a different tier (costing more) or may have been kicked off entirely (excluded). Sometimes these are mild changes. Patients request different prescriptions to match the formulary preference and see how their body responds. When a patient needs an excluded medication the process of prior authorization begins. PBMs present this as a great situation to save everyone money. In reality, it is a time-suck and a stressor on clinic staff and patients. There is a rolling-of-the-dice suspense each time. Will the exclusion be upheld? The collage "Not a Party After All." is a response to the shifting formulary. Good luck to everyone currently in such a process. Hang in there. By the way, if you haven't seen this Brian David Gilbert video "Health Insurance Terms," I recommend it. This is through the podcast episode An Arm and A Leg.
An arts blog advocating for access to essential medicines