PART SIX: SHIRKY DOWN ECONOMICS
This is the sixth of an eight-part patient advocacy manifesto, I Dissent.
This is the sixth part of an eight-part series, I Dissent.
The Princess Bride
“It is not surprising that some would have us stay where we are a little longer to rest, to wait. But [this] country of the United States was not built by those who waited and rested and wished to look behind them. This country was conquered by those who moved forward – and so will space.” ~ JFK
SHIRKY DOWN ECONOMICS
There has been a recent division in the patient advocacy community on what patient advocates’ focus should be and what is allowed to be discussed regarding advocacy.
The narrative of patient advocacy thus far has been written by the Old Guard Paradigm, an interwoven relationship where patient foundations and pharmaceutical companies prop up and celebrate patient voices that fit their agenda. In the age of the online ‘influencer,’ foundations and Pharma are guided by the Shirky Principle – that is, to preserve the problem that their mere existence is charged with finding the solution for.
By perpetuating the idea of disease as identity, whilst promising to be leading the way toward the solution, those in positions of power delegate their agenda to be carried out by ‘influencers’ to sell a narrative of how glamorous and heroic it is to own the limitations of disease and to fight against the ‘abled’ system that looks to oppress disabled people. As the foundations and pharmaceutical companies share, retweet, and engage with this narrative, it empowers a small group of advocates to carry the torch of having the right point of view.
Much like other political debates that devolve into ad hominem attacks on the other side, i.e., the idea that disagreeing with liberal policies makes a conservative a racist and/or sexist fascist, or disagreeing with conservative policies makes a liberal a socialist snowflake or communist, the patient advocacy realm has not been spared the radical response that over-inflates a disagreement into an attack on the patient’s very existence. Thus, a narrative-market fit is perpetuated, either consciously or not, that creates a narrative crafted for audience engagement based while concurrently sharing the empty statements of those who are practicing the aforementioned Shirky Principle.
As such, acknowledging disease as an identity leads us to another social construct, that is, belief perseverance – that our opinions build on each other, supporting the others before it, and to change one belief means to dismantle all the other beliefs that this particular belief is built upon, and therefore will deviate from the identity that has provided us with a sense of community and purpose.
Instead, it becomes necessary to preserve the identity that we have built in the scope of the ‘influencer’ status, so the influencer will engage in a cycle of audience capture: to keep their ever-expanding audience engaged in the ‘fight’ against the abled system that oppresses the patient identity and keeps the overlords appeased by the sheer sacrifice of surrendering any potential hope for not living with disease.
For new patient advocates coming onto the scene who are pushing for the advancement of novel research and call for safer, more durable therapies, the strategy from the Old Guard Paradigm aims to silence the differing voice.
First, they ignore these new voices entirely, ghosting them with the hope that they will eventually lose steam from the exhaustion of screaming into the abyss. Second, if the first strategy does not work, if those new voices begin to rally together to form a stronger voice that demands research for better treatments and cures, then the Old Guard will ridicule those voices, claiming that they are ‘attacking’ the influencer.
Relative privation comes into play here, a fallacy that dismisses the concerns of these new voices, because it is impossible — and insulting — to think about new therapies and cures when the goal is to make the expensive, ineffective standard of care more accessible.
The false dichotomy at play here suggests that patients must choose between biologics and novel therapies. For those who are in remission and thriving on biologics, the idea that novel approaches to treat disease is a threat to their current standard of care is unreasonable and inaccurate. The advent of novel therapies is not going to drive biologics out of the market – if anything, it will force them to become more affordable for patients.
If an advocate genuinely cares about the patients that they represent, many of whom are still suffering and are not benefitting from the current standard of care, then all advocates should use their influence to demand that those patients have access to every possible treatment to give them the potential for a better quality of life.
Instead, unfortunately, the messaging that has occurred both publicly and privately from the Old Guard to new advocates falls in line with the sentiment: behave yourself and get in line, or we will cancel you.
What’s more, as parents, caregivers, and patients work to create smaller, patient-led foundations to highlight current novel research and/or fundraise for research institutions, there are reports of these small foundations being met with cease-and-desist letters from their larger, national counterparts, threatening both parents of sick children and suffering patients with the aim of scaring them into disbanding their efforts.
Calling for new, novel approaches to treat disease shouldn’t be met with hostility. The goal of advocating for novel approaches was never to take away biologics from patients who are seeing benefit from their use; it was to give those who are drug-refractory or partial responders an option that will allow a life without suffering, and an option that doesn’t have potentially dangerous side effects. This is not an ‘either/or’ situation.
However, the narrative sent down the pike from foundations and pharmaceutical partnerships aims to excite advocates and patients alike over new biologics coming on the market, while continuing to perpetuate the narrative that drug-refractory patients and partial-responders should be ‘grateful’ for the biologics that currently exist – and paint those who call for novel approaches as ‘complainers.’
What they fail to mention, however, is the reason for many of the new biologics that come to market: an effort to maintain profit due to biosimilars reducing costs and patents expiring.
For instance, recently, two biologics that had already been on the scene, first for plaque psoriasis and then psoriatic arthritis, were approved for use in Crohn’s disease. According to #GITwitter, the repurposing of these drugs was cause for celebration: another biologic in the arsenal touted as a ‘game changer’ for Crohn’s. What they fail to mention, however, isn’t that these drugs are developed to be game-changers at all — they are developed to create a new profit pipeline following a patent expiration.
Johnson & Johnson’s repurposing of Tremfya and AbbVie’s of Skyrizi come at a time when the companies (one a subsidiary of the other) face competition from biosimilars due to their patents expiring on Remicade and Humira — after they created a “pay-for-delay and market allocation agreements with biosimilar competitors,” as well as creating a “patent thicket” to prevent competition from biosimilars, “which would erode sales.”
Perhaps these biologics will provide benefit to those who are currently drug-refractory or only partially responding to what’s available — one can certainly only hope.
But the question begs itself: why can’t new therapies, such as bioelectronic medicine, exist side-by-side with biologics and small molecules? Why attempt to stifle new options from patients who need them?
There are many different types of advocates, and all can, and should, have a role. This isn’t a zero-sum game.
However, the desire to silence patients who call for more novel, effective, safe treatment options is indicative of the totalitarian system that shames and silences those who dare to think differently.
Rather than calling new advocates ‘ungrateful’ over their discontent due to current therapies not working for them, the ‘Old Guard’ should remember that should there be a time when biologics no longer work for them, it is because of new advocates fighting for better therapies that they, too, will have other options to choose from.
Alternatively, for new advocates who need new novel therapies as soon as possible, the call for ‘gratitude’ from the ‘Old Guard’ isn’t treating these patients’ active disease, nor is it giving them an option that doesn’t also come with the price tag of potential rare cancers and fatal infections.
AN ARDUOUS TASK
Of course, none of this is to say that patients shouldn’t be grateful for the building blocks that have led up to great discoveries. There has been a necessary and crucial role for biologics, and how much they have contributed to patient care in the last thirty years. These drugs have been a vital and necessary stepping-stone in treating disease, and they bought time for millions of patients. As Dr. Farber noted in his presentation in 1951, every milestone makes a difference in the life of a patient.
However, he also noted how far we have yet to go before we can declare victory.
Two things can be true at once: we can celebrate biologics as a necessary stepping stone, and we can say that we can do better. If you get on a Greyhound bus to go 100 miles and they take you only five miles and drop you off, should you be grateful for the five miles or displeased you have to walk 95 miles?
According to a Creaky Joints study, 74% of rheumatoid arthritis patients aren’t happy with their treatment options – and that pain, fatigue, and insomnia continue to cripple their quality of life, and at the time of the study, respondents were experiencing “either moderate disease activity (37%) or high disease activity (33%) while very few achieved remission (16%) or low disease activity (13%) with their current treatment. Of those individuals who reported not being satisfied with their treatment, approximately half were currently experiencing a flare (a period of exacerbated symptoms).”
Sadly, rather than use this as a call-to-action from such an influential organization, the Director of Patient Research at Creaky Joints, and the study author, W. Benjamin Nowell, Ph.D., blamed patients for not alerting their physicians to change their medications to another available drug:
“The findings raise questions about why patients do not change their medications when they experience persistent moderate-to-high disease activity on their current treatment, as recommended by a treat-to-target approach. Perhaps there is a disconnect between the patient’s and physician’s perceptions of acceptable disease activity and appraisal of their current experience of the disease, or a lack of frank discussion about available options for adjusting treatment to improve control of the disease.”
A patient foundation should review a survey with numbers this dismal and come to the very easy conclusion that perhaps, patients need better therapies.
It is an arduous task to remain open-minded enough to be an objective observer who is curious and willing to change their mind when presented with undeniable facts.
Or is it?
Imagine where we would be in the world today if everyone in history accepted the status quo as perpetual.
NEWTON’S THIRD LAW
In the age that compartmentalizes identity, and considers common values to unite all as an example of colonial conquest, we have become a society obsessed with making sure we are saying the right things, and across all identities and intersectionalities, we have developed anthems and rallying cries that let everyone know that we are on the right side of history without actually having to enact policy to improve the lives of the people we claim to be caring for.
Looking back on the patient conference I mentioned in Part Five: Metal Concerts for Migraines, I have no critique of patients introducing themselves by identifying what native land they occupy — if the focus of the presentation or panel that follows highlights how they plan to enact policies that help Indigenous people. At a healthcare conference focused on patient advocacy, and a panel meant to discuss minority disparities in healthcare, I would hope the following conversation would be for demanding cures and better therapies for diseases that disproportionately impact native populations.
Does stating land acknowledgment make a difference in indigenous lives — or does it only make a difference in the life of the person making the statement, by using empty statements of acknowledgment that essentially repeats: I’m a good person. I’m a good person. I’m a good person.
Newton's third law states that every action has an equal and opposite reaction. But what happens if there is no action? What happens, if it’s just an empty statement of acknowledgment that makes us feel like we’re doing something — without actually having to do anything?
“Part Seven: The Body Electric Act” and “Part Eight: So What Are You Going to Do About That?” coming tomorrow, which will conclude this particular series — but there will be more essays to follow, so if you’d like to stay in the loop, subscribe below.
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