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This is a weird STAT First Opinion piece.
The piece itself isn’t that weird. It’s a self-congratulatory history of T1International, a patient advocacy group, by Elizabeth Pfiester, its departing founder. The tone and focus should be familiar to people who spend too much time on LinkedIn.
What’s weird is that STAT chose to run it, insofar as self-congratulatory histories are not, generally all that useful. And it’s weird because there is actually a lot of potential in telling the T1 story well.
T1 was one of a group of advocacy organizations and loosely affiliated web-savvy individuals that have begun to rewrite how advocacy can happen in the digital age. Advocacy used to be about scale, giant fundraisers, and massive letter-writing campaigns. Groups such as T1 showed a different path, one where speed and authenticity mattered.
And some of that pulls through in the STAT piece.** And while that’s an important trend, small, nimble, web-first advocacy is no longer particularly new.
What is new is that we’re learning about what the limits of that advocacy model are, and it feels like T1 might be a great example of those limits. The group has done a great job of getting media hits, but that hasn’t translated into extended pressure or policy wins.
We’ve seen a lot of movement around new commercial models for insulin designed to improve affordability, but I can’t think of anywhere I would credit T1 with being a driving force. In her piece, Pfiester takes credit for the list price cuts, but that wasn’t really a public pressure thing. It was mostly the result of a bureaucratic tweak to Medicare. $35 insulin? That was pharma collaborating with the Trump administration.
I’m also beginning to wonder about the sustainability of the model, and – again – I’m wondering if there aren’t lessons from T1. One of those lessons is the limit of social platforms. Twitter was once an organizing force. Is it still? Are there nascent voices organizing elsewhere? Discord? Tiktok?
There’s also a financial sustainability angle. Some of the group’s original momentum came from grants from Arnold Ventures. It’s not clear if the group still has the support of the billionaire, but public filings suggest that the finances are a bit of a mess, with revenue down two-thirds over the past couple of years. Do new-look advocacy endeavors have a funding model that can lead to long-term viability? Or is long-term viability even needed?
None of this is to take away from the legitimate wins, especially around awareness. But the narrative is a lot more interesting, a lot broader, with a lot more questions than STAT lets on.
All this to say: I will amplify the h*ck out of the first good story or analysis on the state of new-look patient advocacy in 2024.
** I’m going to ignore the gratuitous pharma-bashing in the piece because I am honestly more interested in strategies and tactics for raising the patient voice than I am in T1’s rhetoric. Let me just say that if you are truly interested in improving outcomes for patients, being loudly anti-pharma and rejecting collaboration is going to create a lot of attention and very little action.
This is an incredibly lazy “report” from Patients for Affordable Drugs, looking at 2024 list price increases through a health equity lens. It’s a single page. The data – some of which is laughably wrong – is entirely unsourced. There’s zero context.
Normally, I’d ignore it. But NBC (!) wrote it up, and the resulting piece is a masterclass on what happens at the intersection of unsourced, low-context information and reporters unfamiliar with the ins and outs of health policy. My point is not to throw shade at the journalist – this is hard stuff to handle if you’re coming in cold – but rather to emphasize the importance of efforts to explain how the system works.
For my reference, can anyone suggest a good Drug Price Hike 101 resource? Most of my favorite go-tos on stuff like this (hi Adam! hi Antonio!) are probably a bit too in the weeds for the average American. Is there something aimed more squarely at Joe Sixpack?
Elsewhere:
I have more thoughts on Bernie, maybe for tomorrow. In the meantime, here is a Bloomberg Opinion piece by Lisa Jarvis on the hearing. It’s a “plague o’ both your houses” kind of thing, and – whether or not you agree – I think it probably reflects the conventional wisdom of the health policy press corps.
Given the choice between kicking PBMs and punching the FTC, the WSJ editorial board is going to go for the uppercut every time. Their latest editorial goes after the FTC lawsuit against PBMs, though there are hints that they understand that employers have some responsibility here.
The FDA approved two medicines for Niemann-Pick disease type C, an ultra-rare disease. One of the two — Miplyffa, from Zevra Therapeutics — will carry a list price of $40,000 and $106,000, depending on dose, per Reuters, which cited an analyst as suggesting the net price might top out at closer to $600,000 a year.
Congrats to John Murphy, who will take the helm at the Association for Accessible Medicines. Generic drugs are one of the backbones of the American health care system and deserve great advocacy.
It’s not really health policy-related, but I’m increasingly interested in survey data on how well Americans process data about specific elements of the health care system (we’ve talked a lot about IRA awareness here in the past). The latest entry in the genre is an eye-opening piece about knowledge of Paxlovid in Health Affairs. Half of all Americans responded to a question about the medicine with either: “I have never heard the name Paxlovid before today” (31%) or “I have heard the name Paxlovid, but I was not sure what it was specifically before today” (18%).
Header image via Flickr user Tor Lindstrand.
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