Patient Empowerment and the Collective Action Problem

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.

“You say you want a revolution…”

That was actually a conservative Beatles song of course, and these days the conservatism is popping up in the American lack of enthusiasm for the Hong Kong protestors.  That is the focus of my latest Bloomberg column, here is one excerpt:

Since the protests in Hong Kong started two months ago, I have been struck by the coolness of the American response. I am referring not just to President Donald Trump, who has reiterated that the dispute is an internal Chinese matter. Both the social media I sample and the people I know have been fairly quiescent. I haven’t seen that much cheering and rooting for the protesters, nor have the major Democratic presidential candidates made a show of stressing their dissent from Trump on this issue [there is one Elizabeth Warren tweet]…

The relative indifference may be especially hard to explain when it comes to Americans. After all, the U.S. owes its existence to a rebellion against the British Empire, and against especially long odds. America probably would not have won independence without direct French assistance, while Spain and other nations helped to distract the British on the broader global stage.

Remember the enthusiasm we used to have for the Soviet dissidents, or for Solidarity, also movements facing apparently long odds?  In sum:

…Americans are preoccupied with fighting each other over political correctness, gun violence, Trump and the Democratic candidates for president. To be sure, those issues deserve plenty of attention. But they are soaking up far too much emotional energy, distracting attention from the all-important struggles for liberty around the world.

It’s 2019, and the land of the American Revolution, a country whose presidents gave stirring speeches about liberty and freedom in Berlin during the Cold War, remains in a complacent slumber. It really is time to Make America Great Again — if only we could remember what that means.

There is more at the link, including a discussion of recent demonstrations in Russia as well.

Venice adopting the Renaissance

Venice’s adoption of these Renaissance styles was itself a remarkable break with the past, for the Venetians had always favored the sophisticated East when it came to artistic expression.  But times were changing.  The flame of Byzantium was flickering and even Venice turned its attention to the Western terra firma.  Among the earliest Renaissance artists in Venice was Jacopo Bellini.  The son of a Venetian tinsmith, Bellini worked under Gentile da Fabriano, who produced various now-lost works for the Great Council in 1408.  Bellini accompanied his master to Florence, where he remained for some years learning the new artistic techniques pioneered there.  Later, Bellini traveled to Bruges, where he was introduced to the use of oil paints on canvas — a medium that would forever change Venice.

The seat of high culture in fifteenth-century Venice was not at the governmental center, but in its outskirts at Padua.  There, since 1222, a university had flourished that drew the best minds in Europe and provided an excellent education for Venice’s elite.  After returning to Venice, Bellini set up shop in Padua with his two sons, Gentile and Giovanni.  They were likely influenced by the arrival in 1443 of Donatello, who lived in Padua for about a decade.  His masterwork during those years was the equestrian statue of the condottiere Erasmo da Narni…This magnificent life-size bronze was the first such statue produced since the days of ancient Rome.

That is from Thomas F. Madden, Venice: A New History.

The Lesson of the Spoons

In a story beloved by economists it’s said that Milton Friedman was once visiting China when he was shocked to see that, instead of modern tractors and earth movers, thousands of workers were toiling away building a canal with shovels. He asked his host, a government bureaucrat, why more machines weren’t being used. The bureaucrat replied, “You don’t understand. This is a jobs program.” To which Milton responded, “Oh, I thought you were trying to build a canal. If it’s jobs you want, you should give these workers spoons, not shovels!”

A funny story but one I was reminded of by Greta van Susteren’s not so funny tweet.

Bear in mind that Van Susteren has 1.2 million followers and, according to Forbes, is the 94th most powerful woman in the world.

Of course, there is something odd about using advanced technology to do a job that could be done by millions of immigrants who would be quite happy for the work, but Van Susteren is also against immigration.

Is there anything to be said for banning automation in low-skilled work? Let’s be charitable and assume that there is a problem with not enough work for low-skill workers. It’s unlikely that the best way to address this problem is by banning improvements in productivity. Which sectors are to be artificially restrained and by how much? Should fast checkout workers be banned? Should we prevent customers from walking the aisles and filling their own shopping carts? Remember, self-selection of goods was also once an innovation. As Friedman pointed out, it’s all too easy to reduce productivity.

To the extent that low-skill workers can’t find work (i.e. ZMP workers) the appropriate policy is a wage subsidy as Nobelist Edmund Phelps has suggested (see also the MRU video and Oren Cass on wage subsidies). A wage subsidy is better targeted than the Luddite smashing of machines and because it doesn’t prevent productivity from growing it makes for greater wealth to support the subsidy.

Employees less upset at being replaced by robots than by other people

Generally speaking, most people find the idea of workers being replaced by robots or software worse than if the jobs are taken over by other workers. But when their own jobs are at stake, people would rather prefer to be replaced by robots than by another employee, according to a new study.

Here is the link, via the excellent Kevin Lewis, who will not soon be replaced by a robot.

The Jeff Bezos approach to charity

…he has done something that even the nonprofits receiving his millions remark is highly unusual: He has given them life-changing money with virtually no restrictions, formal vetting, or oversight, according to Recode’s interviews with eight of those funded by him and others familiar with his donations.

Funders of Bezos’s stature typically cast an open call for proposals, spending months poring over applications from nonprofits and sometimes insisting on site visits, interviews, and reams of financial data. Bezos’s team instead quietly cold-called the nonprofits he was already interested in backing, asked them for a few 500-word answers, and then wired them millions of dollars in cash or Amazon shares within about six weeks of making initial contact.

Funders require nonprofits to fill out reports as often as every quarter, outlining the recipients progress on the funder’s own favorite dozen-plus metrics. Bezos does require an annual report, but he doesn’t even send a rubric; nonprofits can effectively create their own accountability and send him whatever type of update they want.

Funders are also prone to placing copious restrictions on their money to ensure it is spent on whatever it is they care about. What does Bezos do? He’s taken “no strings attached” to the extreme, effectively letting the nonprofits spend the money on anything that offers shelter to homeless families, even if the initiative was nowhere to be found on the original applications or grant agreements.

Here is the full Vox/Recode piece by Theodore Schleifer.

Brazil fact of the day

Brazil’s fiscal incontinence is legendary. The number of civil servants grew by 60% between 1995 and 2016, to 12m. Since public-sector workers cannot be fired or have their pay cut, they become a permanent expense once hired. Perks such as raises for seniority can even extend to widows’ pensions, producing the unique “post-mortem promotion”. Nearly 80% of government spending in Brazil goes on salaries and pensions, compared with a global average of 50-60%. “Instead of a state that serves the public, you have a state that serves the state,” says Samuel Pessôa of the Brazilian Institute of Economics at Fundação Getúlio Vargas, a university.

Here is the full article from The Economist, which focuses on fiscal sanity in the state of Espirito Santo.

Income-sharing in Africa

Several African countries have introduced state loan schemes. But governments have struggled to chase up debts. The private sector is now trying to do a better job. Kepler and Akilah, an all-female college in Kigali, are working with Chancen International, a German foundation, to try out a model of student financing popular among economists—Income Share Agreements. Chancen pays the upfront costs of a select group of students. Once they graduate, alumni pay Chancen a share of their monthly income, up to a maximum of 180% of the original loan. If they do not get a job, they pay nothing.

That is from The Economist, a survey article on higher education in Africa.  Here are related links on the same scheme.

Slavery in the history of Venice

There was a thriving trade in human flesh.  By the twelfth century the slave trade in Venice far surpassed that of other cities and other countries.  The Venetians were incorrigible slave traders, and the markets of the Rialto and S. Giorgio were centres of slavery.  They were eager for this particular source of income, since the profit on each item was said to be 1,000 per cent.  They sold Russians and even Greek Christians to the Saracens.  Men and women and children were bought or captured in the region of the Black Sea — Armenians and Georgians among them — before being despatched to Venice where they were in turn sold on to Egypt and Morocco and Crete and Cyprus.  They sold boys and young women as concubines.  One doge, Pietro Mocenigo, had in his seventies two young Turkish men in his entourage.

Many of them were consigned to Venetian households.  No patrician family was complete without a retinue or three or four slaves; even Venetian artisans owned slaves, and used them in their shops or workshops.  Venetian convents possessed slaves for domestic service.  The galleys were stocked with slaves.  But the city always needed a fresh supply; servile status was not inheritable.  Many slaves were freed in the wills of their masters or mistresses.  Marco Polo manumitted one of his slaves, Peter the Tartar, before his own death in 1324.  In 1580 there were three thousand slaves in the capital.  The black gondoliers in Carpaccio’s paintings of Venice are all slaves.

That is from Peter Ackroyd’s Venice: Pure City.

Bosco Verticale

I’d like to see the cost-benefit analysis on this one before signing up, but an intriguing idea:

Vertical Forest is a model for a sustainable residential building, a project for metropolitan reforestation contributing to the regeneration of the environment and urban biodiversity without the implication of expanding the city upon the territory. It is a model of vertical densification of nature within the city that operates in relation to policies for reforestation and naturalization of large urban and metropolitan borders. The first example of the Vertical Forest consisting of two residential towers of 110 and 76 m height, was realized in the centre of Milan, on the edge of the Isola neighborhood, hosting 800 trees (each measuring 3, 6 or 9 meters), 4,500 shrubs and 15,000 plants from a wide range of shrubs and floral plants distributed according to the sun exposure of the facade. On flat land, each Vertical Forest equals, in amount of trees, an area of 20,000 square meters  of forest. In terms of urban densification it is the equivalent of an area of a single family dwelling of nearly 75,000 sq.m. The vegetal system of the Vertical Forest contributes to the construction of a microclimate, produces humidity, absorbs CO2 and dust particles and produces oxygen.

Here is the link, here are other links.

My favorite things Venice

1. Favorite playwright: Carlo Goldoni, eighteenth century, best if you can see one rather than try to read it.

2. Play, set in: William Shakespeare, Merchant of Venice.  Read it carefully and repeatedly, it is far subtler on issues of racism and prejudice than you might have been expecting.

3. Opera, set in: Verdi’s Otello (James Levine recording).  Even as a dramatic work I (perhaps oddly) prefer this to Shakespeare’s play.

4. Memoir, set in: Casanova, though I suggest you read an abridged edition.  I strongly recommend reading Marco Polo as well, though I am not sure that counts as a “memoir.”

5. Short story, set in: Thomas Mann, “Death in Venice.”  But a close runner-up is Henry James, “The Aspern Papers.”

Are you getting the picture? Venice has inspired numerous major writers and artists.  However I don’t love John Ruskin on Venice.

6. Painting: Ah!  Where to start?  I’ll opt for Giorgione’s The Tempest, or any number of late Titian works.  And there are so many runners-up, starting with Veronese, Tintoretto, the Bellinis, and later Tiepolo.  Even a painter as good as Sebastiano del Piombo is pretty far down the list here.  Canaletto bores me, though the technique is impressive.

7. Sculptor: Antonio Canova was born in the Venetian Republic, and I believe he is now one of the most underrated of Western artists.  His greatest work is in Vienna.

8. Composer: I can’t quite bring myself to count Monteverdi as Venetian, so that leaves me with Luigi Nono and also Gabrieli and Albioni and Vivaldi, none of whom I enjoy listening to.

9. Conductor: Giuseppe Sinopoli.  I enjoy his Mahler and Strauss and Elgar, and his take on Verdi’s Aida was special as well.

10. Photographer of: Derek Parfit, here are some images.

11. Movie, set in: I can recall the fun Casino Royale James Bond scene, but surely there is a better selection attached to a better movie.  What might that be?

11. Maxim about: Pope Gregory XIII: “I am pope everywhere except in Venice.”

All in all, not bad for a city that nowadays has no more than 60,000 residents and was never especially large.

I’ll be there in a few days time.