Tuesday, May 28, 2019
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.
Sunday, May 12, 2019
"What I say to the companies is if you think the cost of your drug will scare people from buying your drugs, then lower your prices."
Terrific quote from the not-always-terrific Health and Human Services Secretary, Alex Azar. The Department of HHS will require TV ads for drugs to disclose the list price for the drugs they advertise. Sure, they will be at the end in the small print along with the side effects (‘nausea, vomiting, headache, baldness, serious infections, death, etc.’), and thus far there are no plans to require it in print ads, but it is a big step forward. There is so much evil being done by the Trump Administration that it is nice, every once in a (long) while to be able to point out something that is good. The #Trumpenik himself tweeted something very similar to Azar’s quote.
This has been one effort by the Administration to try and control drug prices by a very indirect route that, tellingly, does not include actually controlling drug prices. It does not even include allowing Medicare (the nation’s biggest drug purchaser) to negotiate drug prices with pharmaceutical manufacturers (that ban was built into the GW Bush era legislation that created the Medicare drug requirement, Medicare “Part D”). Still, it is something and something that is not insignificant. You can tell this from the reaction of the drug manufacturers, represented by PhRMA (the Pharmaceutical Research and Manufacturers of America), which said “We are concerned that the administration's rule requiring list prices in direct-to-consumer television advertising could be confusing for patients and may discourage them from seeking needed medical care." It takes some chutzpah to say such a thing; what PhRMA wants is for patients to demand these drugs (some of which cost upwards of $30,000 a year. Or, for some, a month!) from their doctors, and then the doctors to put pressure on insurers to cover them.
Yes, often the price paid by the insurance company will be much less than the list price that the new regulations will require them to put on their TV ads. But there will still be those, the poorly insured and uninsured, the most needy, who will have to go without, who, even if they are not discouraged from seeking needed medical care will find out that it is not really available to them. While PhRMA is the trade group for the most profitable industry in the US, their objection to posting list prices is mirrored by health providers, especially health systems, who argue that posting their prices from their “chargemaster” is deceptive because insurance companies often (usually) pay less. Yeah, so? Why not charge less and let them pay the charge? This is how it is in most other industries, and in healthcare in most other countries.
The pharmaceutical industry has a well-deserved reputation as an evil cabal, and it is not only the “outliers”. Yes, we have the fantastic extremes of Heather Bresch’s Mylan and its Epi-Pen®, and Martin Shkreli and colchicine, but we also have the “mainstream” pharmaceutical companies who have unconscionably raised their predatory pricing on key life-saving drugs, like insulin. NBC reports a doubling of the price of insulin from 2012-2016, and stories on people who are affected abound. In 2017, the pharmaceutical companies were accused of fixing the price of insulin. They deny it, but their actions belie that denial; in March, Eli Lilly agreed to sell a “generic” version of its Humalog® for half price and ExpressScripts, a pharmacy benefit manager (PBM, read either facilitator or middleman, but however you read it, it is “moneymaker”) said it would offer to cap insulin costs at $25/month. Interesting for a drug whose discoverers refused to patent it because they wanted it freely available to the public. (And, interestingly, insulin still does not require a prescription, although the needles and syringes do…) The NY Times recently reported that “Lawmakers in Both Parties Vow to Rein In Insulin Costs”, but we shall see.
Of course, while its reputation as evil is well-deserved, the pharmaceutical industry is not alone in making rapacious profits from our health needs. The entire “industry” is not about making people healthier, or even curing the sick, but on making money. This includes, of course, insurers, but also health providers, hospitals, health systems, nursing homes, doctors, etc. Ever try to get a price on any health care you need, besides drugs? Ever try to figure out a bill? Two stories from my own life I have written about before but will re-tell here:
Some years ago I had outpatient hernia surgery. I arrived about 6:30am and was back home in my bed by noon. Later I got the bill from the hospital for its charges (not including the doctors’): $10,000. Then my insurance company told me that I would pay $400, they would pay $1,600, and the hospital would write off the other $8,000 as a contractual adjustment.
Of course, if I had been uninsured, I would have not been billed for the $2,000 the hospital actually received, but for the whole $10,000! This is why they don’t want to list their charges. This obfuscation is motivated by insurance companies looking to show what a good deal they provide their customers (look! We saved you $8,000!). Of course, this is baloney; since the hospital was willing to settle for $2,000, that is what they should have charged, everyone.
And price lists? Time for the other story.
I live an hour from the border, and, with Medicare but no dental coverage, I go to Mexico to get my teeth cleaned. It costs $35; a lot less that in the US and is done quickly and thoroughly by a dentist. It costs everyone $35. If you have dental insurance (they take it), it costs $35. But say you need more – a filling, a crown, implants. Not only is it a lot cheaper than in the US but they can tell you exactly how much it is going to cost! A friend had several implants, and this cost thousands (but a fraction of the US cost); the point is they told her exactly what the cost would be up front. This, it turns out, is actually possible!
The article I cited at the beginning, from the Associated Press (and read by me in the Arizona Star, shout-out), quotes
‘Leigh Purvis, a pharma expert with AARP's research division, [who] said disclosure will help dispel a "cloak of darkness" around prices and encourage more informed discussions between patients and their doctors. But she cautioned against expecting too much.
‘"The overall idea of reducing drug prices is something for which there is no silver bullet," said Purvis. "This is just one step, one tool in what will have to be a very big arsenal."’]
She is right. I said it was a good step, worthy of praise, but it will not alone be enough to bring down drug prices. Or the cost of any of the health care we are regularly ripped off for. While the burden will continue, as always, to fall heaviest on those who can least afford it and have the greatest need, it is impacting everyone. Let’s start with letting Medicare negotiate drug prices. Let’s regulate insurance company profits. Let’s make everyone in the health industry post their prices.
Indeed, let’s have a universal, single-payer health system. #MedicareforAll!
Sunday, May 5, 2019
The 25th J. Jerry Rodos Lecture, presented at the 30th Annual Conference of Primary Care Access, Kauai, April 8, 2019:
Part III: Whither Family Medicine and Our Health?
So, in the end, is it all about money? Is it about the primacy of profit? We have seen massive consolidation of health systems, all focused upon making money, even if not “for profit”. Doctors as employees, are “pawns in the game” (remember the Dylan song?). PAs and NPs added not because better but because cheaper. FPs are only good because they are cheaper. Do the key principles of family medicine really make a difference? Barbara Starfield said yes, but she is gone and so is the control FPs had of their practices. We are ambulists (some of us hospitalists), few of us deliver babies. How many even care for families?
Perhaps the variety is why we become family doctors. We have variety in our patients, not just limited to one kind of disease or organ system, and we have variety in our day. Well-child, older person with chronic diseases, sports injury, pregnant woman, substance user, minor surgery. Maybe it is this variety that keeps us going, and makes us different from the sub-sub-specialist who needs to know all there is to know about very little. It is challenging because it is more complex, much as that might grate on the specialist; what they do maybe difficult but it is the same thing over and over. A Graham Center one-pager (by me!) looked at complexity in terms of how many different diagnoses, ICD-9 codes, it took to account for 50% of all codes by specialty. For family medicine, it took 23 codes, for IM 18, for pediatrics 11, for cardiology 6, and for psychiatry 3![i]
We often hear about family physicians being replaced by NPs and PAs, but what about other specialists? Their practices are often more routine, more all-the-same, and in fact easier for NPs or Clinical Nurse Specialists to replace, as we see daily in hospitals. The Clinical Nurse Specialist in Heart Failure knows all there is to know about a narrow practice. But they – both the physicians and non-physicians -- make more money than FPs or FNPs. Is that all it is about?
There are many other challenges that face us, and face other specialists as well. One of the things that my colleagues in other disciplines complain about, and I agree with, is the apparent attrition of critical thinking among many of our trainees. This probably has many intellectual, educational, and social causes, but a big one seems to be the electronic health record (EHR), and the fact that our employers, health systems, have designed them to maximize reimbursement, not truth (is it all about money?). Much of the EHR is about filling in boxes and checking the ones that make our employers the most money. It is about cutting and pasting rather than thinking. The patient had a chest x-ray? Just paste in the whole radiologist report. This creates a huge long note, is a bear to read, is available elsewhere in the record (under, like, ‘radiology reports’, where it was cut-and-pasted from!) and requires no judgement! A simple “normal chest x-ray” (or ‘chest x-ray with interstitial infiltrates, possible pneumonia vs congestive heart failure’) required at least some thinking and judgement. The old “SOAP” note is entirely unbalanced, with not too much in “S” (patient history), bloated “O”s (cut-and-paste) and then – Plan! Almost no “A”, no assessment, no taking the information provided above and reflecting on it and thinking about what it means, or might mean, or might be if it doesn’t mean the first thing. It may be this that is the greatest threat to the role of doctors, any doctors, except as technicians.
But it is not just residents and students and practicing doctors that are being co-opted into a world of rote. Our family medicine leaders – program directors and chairs -- must help contribute to the “needs” of their health system –that is to make as much money as possible. We may, as individuals, care very much for the individuals who are our patients and for good practice, and I think we do, but our institutional role can overwhelm that. For caring for selected populations, mainly those who we get reimbursed for. I remember in the early 1990s, in the days of the Clinton health plan, seeing a version of this cartoon: R. Dolan, MD. “Specializing in the diseases of the insured”.
Our organizational leaders should – and do not always -- guard against the seduction of being part of the “in group”, getting to go to meetings (especially if paid for) being named to policy-making committees and commissions, hobnobbing with other “leaders”. Or maybe I’m wrong, maybe it’s just me, maybe this is really the good part about being a leader, not providing effective advocacy for your faculty, residents, students, and most of all patients? One need not be José Baselga, the former head of Sloan-Kettering who lost his position over graft and lack of disclosure, to lose one’s way – but that is the end of gradual moral and ethical compromise.
Over a decade ago the discipline undertook a major study and marketing program, the Future of Family Medicine. What do you remember from it? I remember that 2/3 of those who thought they had a family doctor really did and 2/3 of those with a family doctor knew it. I remember that when presented with the idea of a doctor who had the characteristics we associate with a family physician – the “Starfield” characteristics of comprehensive, continuous, compassionate, and personal care in the context of family and community – there was terrific resonance among the American people. I remember that specialists valued family physicians almost more than we valued ourselves. But what came of this? Is our health system more oriented to those values and characteristics than it was?
Now we have another project that cost the discipline $20 million, the Family Medicine for America’s Health (FMAHealth) project. Will it change the way the discipline practices and is structured, or will it be more of the same? How many of you have read the reports of the “tactic teams” in the recent February issue of Family Medicine? What do you think? As my friend John Saultz, editor of Family Medicine, notes that if FPs don’t define themselves, their roles, and their scope of practice, others will. It is happening and we as a whole are buying into it.
Is there hope? This is where I always say “a national health system”. I still say it. It is true that a national health system will not solve society’s problems – people will still need homes and food for health. It will not ensure quality of care. It will not mean that family medicine gets its due as the centerpiece of healthcare.
But it provides the context and mechanism for all of these. Most important, and of course this will be the challenge – it will change the focus of the health system from making money to be about delivering health care. It would provide a context for truly measuring quality. It would provide a reason to emphasize critical thinking. It would provide an impetus for health professionals to demand societal changes that will make a difference for people’s health. It would provide a way to make population health really be public health by not excluding anyone.
There will always be those who say we need to compromise, we cannot go too fast; it is something we are commonly hearing now as the campaign for the 2020 Democratic presidential nomination goes forward. But compromise is not always a good thing. Stephen Covey notes it is often lose-lose. We need win-win.
We need completely universal health care. 90% covered won’t do. “99-1/2 just won’t do” (Mavis Staples) because those are real people who are left out. Compromise means real people will not have health care. So the advocates of compromise need to specifically identify who those left out will be. I’m pretty certain they don’t think it will or should be themselves. Unless they are suggesting that we are going to leave them out, leave out the politician, pundit, wealthy, and their friends relatives and neighbors, then the people who need it most should get it most.
In the 1970s the British GP and epidemiologist Julian Tudor Hart put forward the “inverse care law”: the availability of care is inversely proportional to the need for it.[ii]
Let us correct that.
Health care for all!