My lovely friend Susannah Fox thinks and writes extensively about peer-to-peer healthcare, as well as the plight of people with rare health conditions. In a recent article, she developed a framework for thinking about what conditions do and don’t get addressed to patients’ satisfaction (and her friends helped her render it as below):
Susannah asked for feedback about this framework and here’s mine – it’s not cynical enough; economics and open-mindedness (lack of prejudice?) are missing from the equation that fills the lower left quadrant of this chart.
It is pretty clear that “People in Power” – and who they are may vary in different situations – sometimes do not help because they do not know how. But there are also many situations, I would contend, where they do not help or don’t care to help because: 1) they do not believe it will be profitable for them; or, 2) they do not believe the conditions are “real problems” that warrant help and resources. Sadly, these characterizations explain the presence of too many of the items in that dreaded lower left quadrant, as well as some that are missing, such as certain autoimmune disorders and Lyme disease (pointed out in the comments to Susannah’s original post on this topic, found HERE.
For instance, we know that there are problems, such as menopause and childbirth injury, that have clear and available solutions to improve outcomes. However, these problems do not get addressed because they aren’t perceived as real problems because …you know…the presence of ovaries. We are finally seeing a little movement here as women themselves have sought to bring solutions to market for women’s health. Tired of sitting around waiting for male scientists and clinicians to serve them effectively, these entrepreneurial women are marching themselves up to the People in Power table and pulling these problems up above the mid-line of the chart. I point to companies like Gennev, Elektra Health, Bloomlife, Ovia Health, Wildflower, Tia Health, and others as those with strong women leaders who are making commercial solutions happen despite past conventional so-called-wisdom.
It is also pretty clear that many rare diseases go unaddressed (and companies seeking to address them go unfunded or are poorly funded) because there is no drug price tag in the world that could make up for the fact that there are only a handful of patients with the problem. I think of my friend Matt Wilsey at Grace Science, for instance, who was lucky enough to be able to self-fund an initiative to develop a drug for his daughter’s NGLY1 Deficiency. Thank goodness for that, because only 75 people on earth are known to have this ailment and, as a result, no major pharmaceutical company was going to invest to solve it.
And there are diseases that affect far more individuals, such as pediatric congenital heart defects, which can impact 1.3 million of the babies born each year. And yet, until recently, no one had built medical devices required to treat babies. Rather, doctors have been forced to create makeshift miniatures out of way-too-large adult devices and do so on the fly during surgery. Companies like Starlight Cardiovascular are trying to fix this, but they, like so many other pediatric medical companies, are not swarmed by venture capitalists who are very eager to fund companies that treat adult cardiovascular diseases. Similarly, it’s the US government and the Steven and Alexandra Cohen Foundation, working with Luminary Labs, not big diagnostics companies, that are investing in encouraging the development of diagnostic tests for Lyme disease, another that is often dismissed as “it’s just in your head” by physicians.
Anyway, my point is, there are companies in that lower left quadrant that definitely do meet the definition of “people in power do not know how to help.” Alzheimer’s and addiction are high on that list. But in both of those cases there is a hell of a lot of trying going on. Zillions of dollars are pouring into scientific and commercial efforts to serve those markets and patients, but no one has yet fully cracked the code. This is a lot different than what is happening around the conditions that have little to no money chasing their cures and/or conditions where few scientists and researchers are investing time and brain space because it’s just not worth it, either due to financial challenges or their own psychological ones.
I really like the idea of a framework to help characterize what the problems are that patients have and whether they are being addressed to their satisfaction (rather than to the satisfaction of those on the medical side). Sadly, it is not always the case that these concepts align, although I would say that the advent of more involvement of patients in study design and the growing emphasis on Patient Reported Outcomes is encouraging. Nevertheless, if we are going to have a perfect framework, it may have to be 3-dimensional to pick up all the reasons that belong in the lower left quadrant of Susannah’s construct – that quadrant needs its own subcategorical segments – something like this:
I know Susannah is eager to get more feedback on this concept overall, so please feel free to provide that here and I’ll pass it along, or put your comments directly on her site at: https://susannahfox.com/2021/09/08/whose-needs-are-not-met/