There are times that I worry that I might come across as a Luddite, opposed to new drugs, new technology, progress and change, because I am often critical about how these changes are happening, and also frequently have dampened enthusiasm and expectation for the probability that they will be successful in achieving their stated goals. For the record, I am not against either change or progress, although the definition of “progress” is a loaded one; progress is only good to the extent that it makes people’s lives better. Of course, if it does not it can still be considered “change”, but may well be regress. Here I exhibit my values: it has to make people’s lives better, and not just those of a few people, but essentially everyone.
I have recently been re-reading John Nichols’ novel “The Magic Journey”, originally published in 1978. While Nichols’ most well-known book is probably “The Milagro Beanfield War”, published in 1974 and made into a film with Ruben Blades in 1988, “The Magic Journey” is his magnum opus. It documents the transformation of Chamisaville, a fictional town that is a thinly-disguised Taos, from a 400-year old subsistence agrarian economy with little cash changing hands, to a “modern” town. A major way this occurs is through the hiring of young people to build things, paying them salaries, allowing them to buy stuff, going into debt, and selling off their families’ land. It is a bit more complex than that, because the “Anglo Axis” controlling this change does far more direct and clearly evil things to move the process along, but the change, the progress (as it were), occurs. It both changes and does not change the life of the people who live there. Yes, they (or many of them) may now have cars and refrigerators and central heating (and the debt that goes with it), but they mostly all still remain poor, and on the edge of desperately poor, often teetering and sometimes falling. Meanwhile, the positive joys of their lives, the music and singing and storytelling and culture fade with each generation, except those that are commercialized for sale to tourists. The Anglo Axis does well, of course, and the one consistency in their decision making is how to make more money and, in order to continue to do so, cement their control and hold on power at every level.
The story of Chamisaville is a story of capitalism – of its triumphs, bringing progress, and its dark, dark side, institutionalizing a continuing oppression and repression. And, in this, it is a microcosm of the US, and much of the world. The health care industry is a big part of that world, and it is run by the same folks for the same reasons. To wit: make as much money as possible, regardless of who (else) gets hurt. And to press forward with the marketing campaign – health is good for you, right? – so that those who control it continue to make money. In capitalism, certainly US capitalism, “progress” is one of the two most commonly used vector words, along with “growth”. Both, the story goes, imply “better”, but this is not always the case.
We know – or should know by now – that “growth” can be terribly bad. With 7 billion people on the planet, most of them in desperate poverty we also have desperate inequality (in India, for example 9 people have as much wealth as the bottom 50% of the population – that’s 600,000,000 people!), we have limited resources. And we spend an enormous percentage of them on war, which continues to compete with the climate crisis generated by our dependence on fossil fuels to see which will be the first to wipe out life on earth, not just our health. The mantra that growth will solve all our problems is not only wrong, it is by now backward.
Yet, in health care, we continue to strive to make progress, and it is not always bad. But one does not have to be a Luddite to note the risks and contradictions. Novartis has just released a new gene therapy, Zolgesma® that treats spinal muscular atrophy, a terrible genetic disease. That is a good thing. But it costs $2.1 million. That is an unbelievable thing. Should it be made available to the children who need it? Yes. Who pays? Not the individuals (unless they are at least multi-millionaires). The insurers? Yes, but then it gets spread to all those with that insurance. The society? Like a national health insurance plan? Sure, but who decides that Novartis should get $2 million for it? This is a big deal. It isn’t that children with this disease should not be treated, but it is the fact that LOTS and LOTS of other people with more prosaic diseases could be treated for that money.
How to allocate resources will always be a difficult decision for health care. More for lower cost services that benefit more people or more for higher cost services than are critical to a few is an ongoing decision made in nations throughout the world because all resources are limited. However, a few things are clear (to me) that should guide these decisions. The benefit of the many should take precedence over the benefit of the few, even if the few are very rich (and I am not saying that the families of SMA children are). This is easy to say, but becomes more difficult when the benefit to the few is great and the benefit to the many is smaller. Or when you are one of the few. Quality of life is important; in the US and some other rich countries, enormous amounts are spent on high-technology care at the end of life. Yes, sometimes it is difficult to know when the end of life will be exactly, but it is often clear that what is being done is protracting existence without quality or hope of improvement. And, in this context, huge profits for the drug manufacturers is not something that should be built into the equation.
It is not only end-of-life care that skews high-technology. Investment in whiz-bang stuff is always, somehow, sexier than providing the care that we already know how to do, already is relatively cost effective, and is not brand new. We need to keep this in mind as we develop, invest in, propagate, and utilize new technologies. Luke Miner’s Op-Ed piece in the New York Times, ”For a longer, healthier life, share your data” argues that the Health Insurance Portability and Accountability Act of 1996 (HIPAA) too extensively restricts data sharing among providers and especially to researchers, who could use this “big data” to identify epidemiologic patterns and link them to genetic profiles within populations, enhancing both the likelihood of diagnosis and the opportunity to develop treatments. In addition to HIPAA, his big emphasis is on artificial intelligence (AI), and how it could compile and sift through this data to achieve results never before possible. He suggests that, as long as HIPAA prevents sharing this data without your permission, that you give your permission.
This is not necessarily a bad idea, but can never be divorced from the MOST core concept: Who will control that data, and perhaps even more important, who will PROFIT from it. The evidence is absolutely clear: there is nothing so destructive, so evil, so heinous that some people will not do if it makes them enough money. This is lesson #1.
Lesson #2 is that before, or at least while, we invest billions in genetic drugs, personalized medicine, artificial intelligence, high-tech gizmos that will help some people, or maybe (no guarantee!) in some future help a lot of people, we have to be able to disseminate the well-know and cost-effective treatments that we have. Millions die daily from preventable (see: vaccines) or conditions treatable with things we have available to us.
The real magic, the real whiz-bang, the real excitement, will be in ensuring the widest possible implementation of what we already have to care for all the people who need it.