In an insightful paper with human interest but also public policy implications Jasmin Barman-Aksözen writes:
My parents and I searched throughout my entire childhood for an explanation of why I frequently had unbearable burning pain after spending even short periods of time outdoors on a sunny day. This pain was incapacitating and often left me in agony for days, during which I was unable to go to school, to sleep, to tolerate even weak light exposure, or the body heat of my parents as they tried to comfort me. Not a single pain killer provided any relief, and the only option for me was to wait alone in a darkened and cooled room until the pain sub-sided. Of course, we tried everything that physicians recommended; still, not even high sun protection factor sunscreens helped prevent the symptoms despite the fact that they were obviously caused by sunlight. It must have been hard for my parents to see me in such a painful state without being able to alleviate or prevent it. What’s more, the worst thing was that classmates, teachers, and even physicians did not believe me when I told them about the symptoms; I even brought photographs showing myself with swollen and burnt hands and face. Yet, this didn’t stop some from making fun of me when I wore long clothing, hats, or used an umbrella on sunny days to protect myself from the sun’s rays. Eventually, after I was sent to see a psychologist for my “made-up symptoms,” I could no longer tolerate the derision and being treated with such condescension, and decided to stop sharing my experiences with healthcare professionals altogether.
Finally, a full 26 years after the first symptoms, Dr Google provided the answer! In April 2006, I found myself yet again unable to sleep because, despite all precautionary measures taken, I had burnt myself in the strong sunlight of spring. I entered the combination of my symptoms in the Google search mask and, surprisingly, there was a new link in Wikipedia with an expression I had not encountered before “Erythropoietic Protoporphyria.”
The made-for-tv aspect continues as Barman-Aksözen earns a PhD, moves to Switzerland to join the world’s leading lab studying these issues and, yes, develops the first effective treatment!
Afamelanotide was approved for the treatment of adult EPP patients in the European Union (EU) at the end of 2014.
But now is where reality and public policy step back in.
In April 2019, most EPP patients in Europe, however, still do not have access to the only treatment for their condition and are still unnecessarily suffering from fre-quent excruciating pain, social isolation, and impaired life choices. What went wrong? Before a newly approved medicine reaches patients, most European countries per-form a Health Technology Assessment (HTA) to evaluate the benefits in relation to the costs of the new product in order to support decisions on whether it should be reimbursed by the respective national health systems.
Getting the drug approved is only the first step. Now they have to get the medical authorities to pay for it and that means they have to show the drug is not only effective but cost effective given the disability. Barman-Aksözen goes on to describe her efforts to get the drug approved for actual use. She doesn’t put it this way but essentially she has to solve the collective action problem and form a lobbying group to make the case that patients with her disease, EPP, face a serious disability. It’s easy to measure death, however, but hard to measure the “disability weight” on say blindness. The WHO says blindness has a disability weight of .195 today, but in 2004 they gave it a weight of 0.594. Hmmm. One study of Afamelanotide suggests it has a cost of £373,000 per DALY averted, which is high, even though the article recommends adoption. Many meetings ensue in which the case for and against Afamelanotide is made. The process is slow. Years go by. Much depends on seemingly minor choices in how to present the data.
I was reminded of Mancur Olson’s discussion in the Rise and Decline of Nations:
Distributional coalitions make decisions more slowly than the individuals and firms which they comprise [and] tend to have crowded agendas and bargaining tables…The accumulation of distributional coalitions increases the complexity of regulation, the role of government, and the complexity of understandings, and changes the direction of social evolution.
In other words, socializing health care means socializing decisions about how to allocate health care. A difficult tradeoff.
Addendum: The FDA has yet to approve Afamelanotide.
Hat tip: Joe P.
Last year there were 1,187 drug-related deaths in Scotland, a record, and a staggering increase of 27 percent from the year before. Overdoses are more common in Scotland, by some measures, than even in the United States.
Scotland wasn’t always the “sick man of Europe.”
Until around 1950, life expectancy there was on par with most of Western Europe, or better. But after World War II, things in Scotland improved more slowly than in any other Western European country.
If you would like an anecdote:
Mr. Nugent had been using the drug on and off since he was 19, but overdosed the first time he shot up again. He has overdosed three more times since last year.
“I’ve nearly died four times,” said Mr. Nugent, who turns 43 this month. “It’s getting harder for me to recover as I get older.”
Here is the full NYT story by Allison McCann.
The bottom of the educational distribution is doing very very poorly:
Changing mortality rates among less educated Americans are difficult to interpret because the least educated groups (e.g. dropouts) become smaller and more negatively selected over time. New partial identification methods let us calculate mortality changes at constant education percentiles from 1992–2015. We find that middle-age mortality increases among non-Hispanic whites are driven almost entirely by changes in the bottom 10% of the education distribution. Drivers of mortality change differ substantially across groups. Deaths of despair explain a large share of mortality change among young non-Hispanic whites, but a small share among older whites and almost none among non-Hispanic blacks.
That is from Paul Novosad and Charlie Rafkin.
We find the chained direct-out-of-pocket CPI for generic prescription drugs declines by about 50% between 2007 and 2016, while the total CPI [what the dispensing pharmacy receives, the difference being generated by co-pay rates] falls by nearly 80% over the same time period. The smaller decline in the direct out-of-pocket CPI than in the total CPI is due in part to consumers’ increasingly moving away from fixed copayment benefit plans to pure coinsurance or a mixed package of coinsurance and copayments. While consumers are experiencing more cost sharing that in fact shifts more of the drug cost burden on to them, on balance in the US consumers have experienced substantial price declines for generic drugs.
That is from a new NBER working paper by Richard G. Frank, Andrew Hicks, and Ernst R. Berndt.
In recent years I have substantially increased my estimate of the deadly nature of air pollution. It’s not that I had a contrary opinion earlier but the number and range of studies showing surprisingly large effects has raised this issue in relative importance in my mind. I would not have guessed, for example, that the introduction of EZ Pass could reduce pollution near toll booths enough to reduce the number of premature and low birth weight babies. I also find the following result hard to believe yet also hard to dismiss given the the accumulating body of evidence. Diane Alexander and Hannes Schwandt find that Volkswagen’s cheating diesel cars increased the number of low birth weight babies and asthma rates. Here are some details:
In 2008, a new generation of supposedly clean diesel passenger cars was introduced to the U.S. market.These new diesel cars were marketed to environmentally conscious consumers, with advertising emphasizing the power and mileage typical for diesel engines in combination with unprecedented low emissions levels. Clean diesel cars won the Green Car of the Year Award in 2009 and 2010 and quickly gained market share. By 2015, over 600,000 cars with clean diesel technology were sold in the United States. In the fall of 2015, however, it was discovered that these cars covertly activated equipment during emissions tests that reduced emissions below official thresholds, and then reversed course after testing. In street use, a single “clean diesel” car could pollute as much nitrogen oxide as 150 equivalent gasoline cars.Hereafter, we refer to cars with “clean diesel” technology as cheating diesel cars.
We exploit the dispersion of these cheating diesel cars across the United States as a natural experiment to measure the effect of car pollution on infant and child health. This natural experiment provides several unique features. First, it is typically difficult to infer causal effects from observed correlations of health and car pollution, as wealthier individuals tend to sort into less-polluted areas and drive newer, less-polluting cars. The fast roll-out of cheating diesel cars provides us with plausibly exogenous variation in car pollution exposure across the entire socio-economic spectrum of the United States. Second, it is well established that people avoid known pollution, which can mute estimated impacts of air pollution on health (Neidell, 2009). Moderate pollution increases stemming from cheating diesel cars, a source unknown to the population, are less likely to induce avoidance behaviors, allowing us to cleanly estimate the full impact of pollution. Third, air pollution comes from a multitude of sources, making it difficult to identify contributions from cars, and it is measured coarsely with pollution monitors stationed only in a minority of U.S. counties. This implies low statistical power and potential attenuation bias for correlational studies of pollution (Lleras-Muney, 2010). We use the universe of car registrations to track how cheating diesel cars spread across the country and link these data to detailed information on each birth conceived between 2007 and 2015. This setting provides rich and spatially detailed variation in car pollution.
We find that counties with increasing shares of cheating diesel cars experienced large increases both in air pollution and in the share of infants born with poor birth outcomes. We show that for each additional cheating diesel car per 1,000 cars—approximately equivalent to a 10 percent cheating-induced increase in car exhaust—there is a 2.0 percent increase in air quality indices for fine particulate matter (PM2:5) and a 1.9 percent increase in the rate of low birth weight. We find similar effects on larger particulates (PM10; 2.2 percent) and ozone (1.3 percent), as well as reductions in average birth weight (-6.2 grams) and gestation length (-0.016 weeks). Effects are observed across the entire socio-economic spectrum, and are particularly pronounced among advantaged groups, such as non-Hispanic white mothers with a college degree. Effects on pollution and health outcomes are approximately linear and not affected by baseline pollution levels. Overall, we estimate that the 607,781 cheating diesel cars sold from 2008 to 2015 led to an additional 38,611 infants born with low birth weight. Finally, we also find an 8.0 percent increase in asthma emergency department (ED) visits among young children for each additional cheating diesel car per 1,000 cars in a subsample of five states.
Another surprising result is that on a global scale air pollution reduces life expectancy more than smoking. In part, because a single individual can’t quit air pollution.
Globally, the AQLI reveals that particulate pollution reduces average life expectancy by 1.8 years, making it the greatest global threat to human health. By comparison, first-hand cigarette smoke leads to a reduction in global average life expectancy of about 1.6 years. Other risks to human health have even smaller effects: alcohol and drugs reduce life expectancy by 11 months; unsafe water and sanitation take off 7 months; and HIV/AIDS, 4 months. Conflict and terrorism take off 22 days. So, the impact of particulate pollution on life expectancy is comparable to that of smoking, twice that of alcohol and drug use, three times that of unsafe water, five times that of HIV/AIDS, and more than 25 times that of conflict and terrorism.
The Democratic-controlled House just voted to abolish the “Cadillac tax” on employer-supplied health plans.
The Independent Payments Advisory Board no longer exists, having been abolished with support from both parties.
In the public option for Democratic-controlled Washington State, reimbursement rates were set at up to 160 percent of Medicare levels.
Single-payer health care will save America a great amount of money.
That is the title of the new Bill Bryson book, and it delivers in all the ways you would expect a Bryson book to do. Here is one sample paragraph:
Before penicillin, the closest thing to a wonder drug that existed was Salvarsan, developed by the German immunologist Paul Ehrlich in 1910, but Salvarsan was effective against only a few things, principally syphilis, and had a lot of drawbacks. For a start, it was made from arsenic, so was toxic, and treatment consisted in injecting roughly a pint of solution into the patient’s arm once a week for fifty weeks or more. If it wasn’t administered exactly right, fluid could seep into muscle, causing painful and sometimes serious side effects, including the need for amputation. Doctors who could administer it safely became celebrated. Ironically, one of the most highly regarded was Alexander Fleming.
By the way:
…the average grave is visited for only about fifteen years…
You can pre-order the book here, I would be interested to read more about Bryson’s work, writing, and research habits.
This excellent Sarah Kliff NYT article is from a few weeks ago, but I missed it the first time around. Here is the clincher:
“The whole debate was about the rate mechanism,” said Mr. Frockt, the state senator. “With the original bill, with Medicare rates [for the state’s public option], there was strong opposition from all quarters. The insurers, the hospitals, the doctors, everybody.”
Mr. Frockt and his colleagues ultimately raised the fees for the public option up to 160 percent of Medicare rates.
“I don’t think the bill would have passed at Medicare rates,” Mr. Frockt said. “I think having the Medicare-plus rates was crucial to getting the final few votes.”
Nonetheless the piece is interesting throughout, and illustrates some basic dilemmas with health care reform and public options in particular, especially when a sector is controlled by powerful lobbies.
The Trump administration will allow greater compensation for live kidney donors.
Supporting Living Organ Donors. Within 90 days of the date of this order, the Secretary shall propose a regulation to remove financial barriers to living organ donation. The regulation should expand the definition of allowable costs that can be reimbursed under the Reimbursement of Travel and Subsistence Expenses Incurred Toward Living Organ Donation program, raise the limit on the income of donors eligible for reimbursement under the program, allow reimbursement for lost-wage expenses, and provide for reimbursement of child-care and elder-care expenses.
While pure compensation is still illegal this goes a long way to recouping costs. In addition the executive order improves the rules that govern the organ procurement organizations with the goal of deceasing the number of wasted organs. Compensating kidney donors is a policy that I have long supported. Together the two changes could save thousands of lives. Even Dylan Matthew, a living organ donor who writes for Vox, is pleased.
Hat tip: Frank McCormick
There’s a line that reads, ‘Rarely did I experience such a radical and visceral imbalance of power as I did as a psychiatric inpatient amid clinicians who knew me only as an illness in human form.’ What was that like?
When you’re in an inpatient situation in a psychiatric hospital, you lack autonomy in a way that I have experienced in few other situations. You’re not allowed to have a lot of things, especially things that are of comfort. You’re not allowed to have them because they’re dangerous, sure — like shoelaces — but you’re also not allowed to have them because they don’t want you to be distracted by them, such as phones or laptops or iPads. So you’re made to follow their schedule.
You’re also not allowed to know how long this deprivation is going to last.
That’s part of the reason the patients are so eager to talk to the doctor every day, because the doctor is the only person who can who can sign off on you getting out. But sometimes the whole day passes and you have not gotten to talk to the doctor. In the meantime, you’re expected to behave in certain ways that are seen as appropriate — like a group activity like colouring, or like making paper snowmen. You can’t be pouty about it. Otherwise that’s a check against you, and will get you further away from being checked out. So you have to be smiley about it, even though you’re a 36-year-old adult and you’re expected to make glitter snowmen.
Worldwide, dementia affects 47.5 million people with 9.9 million new cases each year. Recently, a pop-up restaurant in Tokyo spent 3 days in operation, changing the public’s perception of those suffering from dementia and Alzheimer’s. The Restaurant of Order Mistakes, which was open in early June, was staffed by sufferers of these disorders.
Six smiling waitresses took orders and served food to customers, who came in knowing they may not get what they asked for. Each waitress suffers either from dementia or Alzheimer’s, hence the name of the restaurant. One waitress, who used to work in a school, decided to participate since she was used to cooking for children and thought she could do it. But, of course, the day was not without mistakes.
Here is the full story, via Chaim K.
The slightly misleading subtitle is How Rogue Chemists are Creating the Deadliest Wave of the Opioid Epidemic. Why misleading? So many substance abuse books are a mix of hysterical in tone and a disappointing “paint by numbers” in their execution, but this one really stands out for its research, journalism, and overall analysis. To give just one example, it is also a great book on China, and how China and the Chinese chemicals industry works, backed up by extensive original investigation.
Start with this:
Americans take more opioids per capita — legitimate and illegitimate uses combined — than any other country in the world. Canada is second, and both far outstrip Europe. Americans take four times as many opioids as people do in the United Kingdom.
For many years, Chinese organized-crime groups known as triads have been involved in the international meth trade. But experts familiar with triads say their influence appears to be waning in the fentanyl era. “They’re a shadow of their former selves,” said Justin Hastings, an associate professor in international relations and comparative politics at the University of Sydney…Though ad hoc criminal organizations continue to move drugs in China, major trafficking organizations are rare there, and cartels basically nonexistent. This leaves the market wide open for Chinese chemical companies, who benefit from an air of legitimacy.
As for marijuana and cocaine, they are used by only about one in every forty thousand individuals in China. But the book covers the entire U.S. history as well.
Definitely recommended, this will be making my year-end “best of” list for non-fiction. And yes I did go and buy his earlier book on West Coast rap music.
The scholarship suggests that more transparency in health care could backfire, causing prices to rise instead of fall…
“I don’t know if you have had the misfortune of having health economists tell you about Danish cement,” said Amanda Starc, an associate professor of strategy at the Kellogg School of Management at Northwestern, one of several scholars who mentioned a paper with a punny name: “Government-Assisted Oligopoly Coordination? A Concrete Case.”
“Everybody loves the Danish concrete example!” said Matthew Grennan, an assistant professor of health care management at Wharton, who has studied the effects of price transparency on hospital purchases.
The Danish government, in an effort to improve competition in the early 1990s, required manufacturers of ready-mix concrete to disclose their negotiated prices with their customers. Prices for the product then rose 15 percent to 20 percent.
The reason, scholars concluded, is that there were few manufacturers competing for business. Once companies knew what their competitors were charging, it was easy for them to all raise their prices in concert. They could collude without the sort of direct communication that would make such behavior illegal. It wasn’t easy for new companies to undercut the existing ones, because the material hardens so fast that you can’t ship it far…
Research on gasoline markets has likewise found that publicizing prices appears to enable collusion in places where there are only a few competitors. But among more plentiful Israeli supermarkets, a database of prices appears to have lowered them.
Scholars at the Federal Trade Commission put out a paper in 2015 cautioning against the kind of price transparency that the president is embracing.
This paper examines whether information frictions in the market for medical procedures lead to higher prices and price dispersion in equilibrium. I use detailed data on medical imaging visits to examine the introduction of a state-run website
providing information about out-of-pocket prices for a subset of procedures. Unlike other price transparency tools, the website could be used by all privately insured individuals in the state, potentially generating both demand- and supply-side effects. Exploiting variation across procedures available on the website as well as the timing of the introduction, estimates imply a 3 percent reduction in spending for visits with information available on the website. This is due in part to a shift to lower cost providers, especially for patients paying the highest proportion of costs. Furthermore, supply-side effects play a significant role—there are lower negotiated prices in the long-run, benefiting all insured individuals even if they do not use the website. Supply-side effects reduce price dispersion and are especially relevant when medical providers operate in concentrated markets. The supply-side effects of price transparency are important given that high prices are thought to be the primary cause of high private health care spending in the US.
I hope we learn more about this soon.
I refer you to Prevalence of 12-Month Alcohol Use, High-Risk Drinking, and DSM-IV Alcohol Use Disorder in the United States, 2001-2002 to 2012-2013. My apologies for not being able to locate the primary data sooner.
Key summary quotes below:
Twelve-month alcohol use significantly increased from 65.4% in 2001-2002 to 72.7% in 2012-2013, a relative percentage increase of 11.2%
The prevalence of 12-month high-risk drinking increased significantly between 2001-2002 and 2012-2013 from 9.7% to 12.6% (change, 29.9%) in the total population.
The prevalence of 12-month DSM-IV AUD increased significantly from 8.5% to 12.7% (change, 49.4%) in the total population.
Twelve-month DSM-IV AUD among 12-month alcohol users significantly increased from 12.9% to 17.5% (change, 35.7%) in the total population.
At the end of the day, I am still going to trust outcomes data over survey data. People lie, autopsies don’t. What I know is that acute alcohol poisoning increased by 700% in 20 years. You die from acute alcohol poisoning not because you slowly got sick over years, but because you drank so much so quickly that your body is overwhelmed. And this is in spite of the medical profession getting better at hemodialysis to bring down acutely toxic ethanol poisoning.
What I also know is that alcohol related hepatic deaths bottomed out in 2003 and have since been rising rapidly (~50% increase). This is due to the fact that the generation socialized by prohibition had lower lifetime alcohol use and problematic alcohol use than the generations before or after. As that generation died off, or aged out, successive generations who drank more started refilling the hepatic wards. Even more fun for every age bracket, we are seeing more alcohol related hepatic death than we saw a decade ago for those same age brackets excepting only the youngest cohorts.
These are basically impossible to square with a thesis of no substantial change in drinking patterns. They fit quite nicely with formal epidemiological surveys showing more problematic drinking and a shift in alcohol consumption.
That is from “Sure,” see also his/her other comments in the longer thread.
At least for diabetes care, the answer seems to be yes, according to Karen Eggleson, et.al.:
We analyze individual-level panel data on medical spending and health outcomes for 123,548 patients with type 2 diabetes in four health systems. Using a “cost-of-living” method that measures value based on improved survival, we find a positive net value of diabetes care: the value of improved survival outweighs the added costs of care in each of the four health systems. This finding is robust to accounting for selective survival, end-of-life spending, and a range of values for a life-year or, equivalently, to attributing only a fraction of survival improvements to medical care.
That is from a new NBER working paper. One way to read this paper is to be especially optimistic about medical progress, and also the U.S. health care system and furthermore the net contribution of science and medicine to economic growth. Another way to read this paper is to be especially pessimistic about human discipline and the ability to follow doctor’s orders.