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.
The New York Times op-ed illustration by Erre Gálvez with photographs by D&C Photography, Javier Zayas and milosluz, via Getty Images is a fine accompaniment for “The Next Anti-Abortion Tactic: Attacking the Spread of Information.” Collage lends itself well to this topic.
The art ran with a December 4, 2022 article by Michele Goodwin and Mary Ziegler. Are there not enough barriers to medicines? Goodwin and Ziegler point out “More Americans lack access to abortion than before, and abortion access has everything to do with access to information.” (The online article appeared on December 3.)
I appreciate the artful graphics used to show how complicated and out-of-date our current patent laws are. This is just one example of the clean, clear illustrations from The Initiative for Medicines, Access, and Knowledge (I-MAK).
The nonprofit was founded in 2006 by health justice lawyers Priti Krishtel and Tahir Amin. Learn more about how their colleagues strive for a more just patent system through structural change on the I-MAK site. Download the brief Pharmaceutical Patent Myths, from which this graphic comes, here.
Krishtel has been named one of 25 MacArthur Fellows for “Exposing the inequities in the patent system to increase access to affordable, life-saving medications on a global scale.” (see her MacArthur Foundation profile). Awardees were announced on October 12, 2022. I am thrilled and relieved that her work is receiving such deserved support. NPR’s global health and development blog Goats and Soda also does a good job highlighting her goals and the sheer necessity of improving our patent system.
This Op-Ed first appeared in The Gettysburg Times September 8, 2022
This bumper sticker isn’t necessarily meant for public health, but “EVERYONE does better when EVERYONE does better” fits perfectly when we talk about access to healthcare and access to essential medicines. So does this abstract ink drawing from Eric H. Crump’s series. I happen to come into possession of both the artwork and the bumper sticker in August when the Inflation Reduction Act was signed into law.
We are connected. We are interdependent.
The Johns Hopkins Bloomberg School of Public Health defines public health this way: “In the medical field, clinicians treat diseases and injuries one patient at a time. In public health, researchers, practitioners, and educators prevent disease and injury at the community and population level. We identify the causes of disease and disability, and we implement large-scale solutions.” The issue of drug pricing is both a public health issue and an individual medical issue. Public health can seem abstract because it is concerned with populations, but connections are connections, and every population is made up of real people. The senators and house members who voted against the Inflation Reduction Act voted against the needs of real people.
For 19 years Medicare has been blocked from any kind of negotiating prescription drug costs. According to the White House News Release from August 15, the pharmaceutical industry has already spent $187 million on lobbying in 2022. That is $187 million in this yet-unfolding year to put obstacles between real people and the drugs they need.
In a recent NPR Weekend Edition author interview about A History of Present Illness, Dr. Anna DeForest zeroed in on a truth about those who hold so much power they don’t even notice it. “I realized something about power, which is that it’s not a feeling. It is the absence of obstacles.”
This is not a partisan issue. It is a voter issue. It is a public health issue linking us as taxpayers and patients and healthcare providers and members of congress in dramatic and subtle ways.
In November, consider where candidates stand on access to medicines. Notice who includes you and who excludes you. Notice who would rather pay for obstacles than for access. Notice who wants everyone to do better.
Katy Giebenhain is a member of the Gettysburg Area DFA Healthcare Task Force.
An arts blog advocating for access to essential medicines