Wednesday, January 4, 2017

France introduces opt-out policy on organ donation

The Guardian has the story:
France introduces opt-out policy on organ donation
Change in law means consent for organs to be removed is presumed unless person joins official ‘refusal register’

"France has reversed its policy on organ donations so that all people could become donors on their death unless they join an official register to opt out.
The new law presumes consent for organs to be removed, even if it goes against the wishes of the family.
Until 1 January, when the legislation took effect, unless the person who had died had previously expressed a clear wish for or against donation, doctors were required to consult relatives who, in almost a third of cases, refused.
Those who do not want all or any of their organs to be used must now put their name on a “refusal register” – so far 150,000 people have signed up. The authorities have promised to make it easier for those who wish to refuse by allowing them to join the register online instead of by registered post.
Alternatively, those vehemently opposed to their organs being used can leave a signed document with their next-of-kin or transmit their wish orally to relatives who must make a written declaration of non-consent to doctors at the time of death. The process is explained on the agency’s Facebook page.
In November, the French Agence de la Biomédecine released a film, Déjà-vu2, aimed at encouraging 15- to 25-year-olds to agree to organ donation.
The European Union has highlighted the lack of organs for transplant and the increasing number of patients on waitings lists worldwide. Its figures claim that in 2014, 86,000 people were waiting for organ donations in EU states, Norway and Turkey, and 16 people were dying every day while waiting for a transplant.

In the UK, doctors lament one of the lowest consent rates in Europe, as well as a shortage of donors from black or Asian communities. A record number of organs were donated and transplanted in the UK in 2015-16, but the rate remains short of the target of 80% by 2020. The biggest obstacle remains relatives’ opposition, who have vetoed transplants even from registered donors.
NHSBT, which is responsible for the NHS organ donor register and for matching and allocating donor organs, said it was considering further steps it could take when approaching families to ensure more potential donors’ decisions were not vetoed.
One option would be to no longer ask the next-of-kin to confirm consent or authorisation. Their permission is not required by law if someone has registered a decision to donate on the NHS organ donor register.
Families in Scotland are already required to complete a retraction form to record why they overturned a relative’s decision to donate. NHSBT said a similar form be introduced across the UK."

HT: Frank McCormick

Tuesday, January 3, 2017

Tony Atkinson (1944-2017)

Tony Atkinson died on January 1, 2017. This surely means that some working group of the Nobel committee for Economics will have to start over.

Here's the Financial Times: Sir Tony Atkinson, economist and campaigner, 1944-2017.  Labour party activist was a dominant force in the study of inequality

 A very similar obit appeared in the NY Times:
Anthony B. Atkinson, Economist Who Pioneered Study of Inequality, Dies at 72

Take a look at his website, and in particular
The 15 Proposals from Tony Atkinson’s ‘Inequality – What can be done?’

The Economist explores adultery

Hyphens are important, and the subject of this Economist essay is extra-marital sex, as opposed to extra marital sex.

WHAT’S WRONG WITH INFIDELITY?
Americans are increasingly intolerant of adultery, but Esther Perel believes they should take a more European attitude.

"Attitudes towards sex and sexual morality have changed dramatically in the past few decades, with ever fewer Westerners clucking over such things as premarital sex or love between two men or two women, but infidelity is still seen as a nuclear no-go zone in relationships. In fact, studies show that even as we have become more permissive about most things involving either sex or marriage – ever ready to accept couples who marry late, divorce early, forgo children or choose not to marry at all – we have grown only more censorious of philanderers. In a survey of public attitudes in 40 countries from the Pew Research Centre, an American think-tank, infidelity was the issue that earned the most opprobrium around the world. A general survey of public views in America, conducted by the University of Chicago since 1972, has found that Americans are more likely to say extramarital sex is always wrong now than they were throughout the 1970s, 1980s and 1990s. Younger generations can usually be relied upon to push sexual morality in a more permissive direction, but infidelity is the one area where the young and old seem to agree. In this broadly tolerant age, when so many of us have come around to accepting love in all different shapes and sizes, adultery is the one indulgence that remains out of bounds."
****************

Here's the NORC* report, whose first figure shows that Extra-marital sex wins the race for something that is "always wrong" in public opinion, with 80% of the surveyed Americans agreeing (contrast that with 20% for sex before marriage).
Trends in Public Attitudes about Sexual Morality, APRIL 2013



*NORC at the University of Chicago = National Opinion Research Center.

****************
To get technical, I like to think of transactions as repugnant if some people want to engage in them and others don't want them to  even though the others can’t detect that the transaction has taken place unless someone tells them. So secret adultery seems to fall into that category (if you confine your attention to adulterers who engage in safe sex and are discreet, not overcome by guilt, etc.).  

And it appears that the repugnance of adultery is in a long cycle of a sort: it's on the short list of Ten Commandments ("don't commit adultery" comes right after "don't commit murder"), it appears to have become less repugnant in Europe and perhaps at times in the U.S., but its repugnance level in the US remains high, and apparently is rising.  And of course adultery carries the risk of discovery (not least because it may be the cause of guilt, and guilty secrets), and in places where it is repugnant it therefore remains a potential home-wrecker.  

Maybe the repugnance of adultery is related to the importance of contracts--if most people believe marriage comes with a promise of fidelity, then adultery is a violation of at least an implicit promise. Or maybe it has to do with the fact that a good marriage is a repeated game based on trust, and that even a well kept secret violation of trust takes a toll on the secret-keeper (if only through Mark Twain's adage "tell the truth, then you don't have to remember anything") and hence on the marriage...


Repugnance is important--economists need to understand it better. (It's not just laws against buying kidneys for transplant...)

*************

More on adultery, and its sometimes special place in law: Adultery, Law, and the State: A History.
NOVEMBER, 1986, 38 Hastings L.J. 195 by Jeremy D. Weinstein

Monday, January 2, 2017

Repugnance watch: Gender identity. 8-year-old transgender boy barred from Cub Scouts in NJ and NYC issues an "intersex" birth certificate,

Two (otherwise unrelated) recent news stories suggest that social attitudes towards gender identity may be tested in the new year in ways that resemble the transformation that has taken place in our collective outlook on sexual orientation.

The first story concerns the cub scouts.  It happened in Secaucus, NJ, and NorthJersey.com has a report: 8-year-old transgender boy barred from Cub Scouts

"From the moment he joined, 8-year-old Joe Maldonado eagerly looked forward to camping trips and science projects as a member of the Cub Scouts. But his expectations were dashed after his mother said she received a phone call from a Scouting official who told her that Joe would no longer be allowed to participate because he was born a girl.

"Kristie Maldonado said she was stunned because her son had been a member of Cub Scout Pack 87 in Secaucus for about a month and his transgender status had not been a secret. But some parents complained, an official from the Northern New Jersey Council of Boy Scouts told her — even though her son had been living as a boy for more than a year and was accepted as a boy at school, she said
...
"Joe's case could be the first time someone has been barred from participating in Scouting because of transgender identity, said members of the LGBT community. And it comes as the Boy Scouts of America appeared to be emerging from a period of turmoil involving sexual-orientation issues, reversing long-standing bans against gay Scouts and gay Scouting leaders over the past few years. Those policy changes were made amid an internal debate that saw at least one local council defy national Scouting decrees by hiring a gay camp counselor and pressure brought from corporations that withheld donations from the organization.

"The Boy Scouts did not address the transgender issue at the time, LGBT advocates said, perhaps because the organization had no written policy related to gender identity. Transgender rights only recently emerged as a national issue, often focusing on the use of restrooms based on gender identity. Dozens of North Jersey school districts, including Secaucus, have granted that right, among others, to transgender students.
...
"Effie Delimarkos, the communications director for the Boy Scouts of America, said in a statement that the organization’s Cub Scouts programs are for boys age 7 to 10 and that "the classification on the participant’s birth certificate” would be used to “confirm legal status.”
...
"Delimarkos said in her statement that the Boy Scouts consider membership for transgender children to be a separate issue from that of gay children.

“No youth may be removed from any of our programs on the basis of his or her sexual orientation,” she said, but added: “Gender identity isn’t related to sexual orientation.”
**************

The second story concerns a newly reissued birth certificate issued by the New York City Department of Health and Mental Hygiene (DOHMH):
Nation's First Known Intersex Birth Certificate Issued in NYC

"On Tuesday, 55-year-old Sara Kelly Keenan received something in the mail she's been waiting for her entire life: an accurate birth certificate.

Keenan was born intersex, with male genes, female genitalia and mixed internal reproductive organs. Now, Keenan, who uses female pronouns, is making history. Hers is believed to be the first birth certificate ever issued in the United States that reads "intersex" in the gender field, instead of "male" or "female."

Sunday, January 1, 2017

Matchmaker Exchange: Matching genes and symptoms for patients with very rare diseases ("lonesome exomes")

There's a lot of genetic matchmaking going on in the world. In kidney transplantation we worry about HLA matching, which is even more important in bone marrow matching. Both of those matching processes mostly involve common gene sequences--if you have very rare HLA's, you will have less luck at finding a bone marrow match.

But as more patients with very rare disease have their exome sequenced, there are patients with particular phenotypes and symptoms and "lonesome exomes," which have a suspect gene that may be responsible for their disease, which will remain only a suspect until more patients with that disease and that gene variant can be identified. These data are mostly in separate databases at different clinical research institutions.

That's where Matchmaker exchange comes in--it's a protocol for looking for patients with the same gene variants and the same diseases, so that matches can be made and the genes responsible for rare diseases can be identified.

Here's the paper:
Philippakis AA, Azzariti DR, Beltran S, Brookes AJ, Brownstein CA, Brudno M, Brunner HG, Buske OJ, Carey K, Doll C, Dumitriu S, Dyke SOM, den Dunnen JT, Firth HV, Gibbs RA, Girdea M, Gonzalez M, Haendel MA, Hamosh A, Holm IA, Huang L, Hurles ME, Hutton B, Krier JB, Misyura A, Mungall CJ, Paschall J, Paten B, Robinson PN, Schiettecatte F, Sobreira NL, Swaminathan GJ, Taschner PE, Terry SF, Washington NL, Züchner S, Boycott KM, Rehm HL. 2015. The Matchmaker Exchange: A Platform for Rare Disease Gene DiscoveryHuman Mutation36: 915–921. doi:10.1002/humu.22858 


ABSTRACT: There are few better examples of the need for data sharing than in the rare disease community, where patients, physicians, and researchers must search for “the needle in a haystack” to uncover rare, novel causes of disease within the genome. Impeding the pace of discovery has been the existence of many small siloed datasets within individual research or clinical laboratory databases and/or disease-specific organizations, hoping for serendipitous occasions when two distant investigators happen to learn they have a rare phenotype in common and can “match” these cases to build evidence for causality. However, serendipity has never proven to be a reliable or scalable approach in science. As such, the Matchmaker Exchange (MME) was launched to provide a robust and systematic approach to rare disease gene discovery through the creation of a federated network connecting databases of genotypes and rare phenotypes using a common application programming interface (API). The core building blocks of the MME have been defined and assembled. Three MME services have now been connected through the API and are available for community use. Additional databases that support internal matching are anticipated to join the MME network as it continues to grow.


Here's a video presentation by Dr Kym Boycott, one of the authors.


Saturday, December 31, 2016

The passing year, and the year to come

The future is the hardest thing to predict, and the coming year is looking particularly unpredictable.
But people are resilient, and we'll learn something about the resilience of democratic institutions: I'm cautiously optimistic.

In the past year, I noted the passing of game theorists Tom Schelling, Reinhard Selten, Howard Raiffa, Jim Friedman, and Lloyd Shapley (here, and here, and here, and here), as well as my good friend the eminent scholar of organizations Keith Murnighan who helped set me on the path of experimental economics, and transplant immunology pioneer Paul Terasaki.

NSF grant on collaborative kidney exchange: final report

I had a long-running NSF grant at the NBER in the years when I was at Harvard, called "Collaborative Research on Kidney Exchange." I recently filed a final report for the last leg of it, which ran from 2011-2016. (I'm still collaborating on kidney exchange, and anticipate doing so for some time, with my long term collaborators Itai Ashlagi and Mike Rees.)
Here is the link to the page on which you can find the report by searching for Federal Award ID Number 1061932  (that takes you to a page that has found the grant, and then you have to click on the number to get the report--your government dollars at work as we used to say:)

For some reason, the final report is missing many of the publications reported in the annual progress reports...but it gives an idea of what we were thinking when we began this leg of the work, and some of the different directions in which we were led.

A more comprehensive list of publications from this work in the period 2011-16 is below, I may have more to say about them in the future.

1.      Ashlagi, Itai, Duncan S. Gilchrist, Alvin E. Roth, and Michael A. Rees, “Nonsimultaneous Chains and Dominos in Kidney Paired Donation – Revisited,” American Journal of Transplantation, 11, 5, May 2011, 984-994  http://www.stanford.edu/~alroth/papers/Nonsimultaneous%20Chains%20AJT%202011.pdf
2.      Ashlagi, Itai, Duncan S. Gilchrist, Alvin E. Roth, and Michael A. Rees, “NEAD Chains in Transplantation,” American Journal of Transplantation, December 2011; 11: 2780–2781. http://web.stanford.edu/~iashlagi/papers/NeadChains2.pdf
3.      Wallis, C. Bradley, Kannan P. Samy, Alvin E. Roth, and Michael A. Rees, “Kidney Paired Donation,” Nephrology Dialysis Transplantation, July 2011, 26 (7): 2091-2099 (published online March 31, 2011; doi: 10.1093/ndt/gfr155, https://academic.oup.com/ndt/article/26/7/2091/1896342

6.      Ashlagi, Itai and Alvin E. Roth, “New challenges in multi-hospital kidney exchange,” American Economic Review Papers and Proceedings, 102,3,  May 2012, 354-59.
7.      Rees, Michael A.,  Mark A. Schnitzler, Edward Zavala, James A. Cutler,  Alvin E. Roth, F. Dennis Irwin, Stephen W. Crawford,and Alan B.  Leichtman, “Call to Develop a Standard Acquisition Charge Model for Kidney Paired Donation,” American Journal of Transplantation, 2012, 12, 6 (June), 1392-1397. (published online 9 April 2012 http://onlinelibrary.wiley.com/doi/10.1111/j.1600-6143.2012.04034.x/abstract ).
8.      Kessler, Judd B. and Alvin E. Roth, “Organ Allocation Policy and the Decision to Donate,” American Economic Review, Vol. 102 No. 5 (August 2012), 2018-47.

14.   Kessler, Judd B. and Alvin E. Roth, “Getting More Organs for Transplantation,” American Economic Review, Papers and Proceedings, May 2014,104 (5): 425-30.
15.   Kessler, Judd B. and Alvin E. Roth, “Loopholes Undermine Donation: An Experiment Motivated by an Organ Donation Priority Loophole in Israel, “Journal of Public Economics, 114, June 2014, 19-28.

17.   Ashlagi, Itai, and Alvin E. Roth, "Free Riding and Participation in Large Scale, Multi-hospital Kidney Exchange,” Theoretical Economics 9 (2014), 817–863. http://econtheory.org/ojs/index.php/te/article/viewFile/1357/11619/357
18.   Niederle, Muriel and Alvin E. Roth, “Philanthropically Funded Heroism Awards for Kidney Donors?, Law & Contemporary Problems, 77:3, 2014, 131-144. http://scholarship.law.duke.edu/cgi/viewcontent.cgi?article=4696&context=lcp

21.   Anderson, Ross, Itai Ashlagi, David Gamarnik and Alvin E. Roth, “Finding long chains in kidney exchange using the traveling salesmen problem,” Proceedings of the National Academy of Sciences of the United States of America (PNAS), January 20, 2015 | vol. 112 | no. 3 | 663–668, http://www.pnas.org/content/112/3/663.full.pdf+html 
22.   Anderson, Ross, Itai Ashlagi, David Gamarnik, Michael Rees, Alvin E. Roth, Tayfun Sönmez and M. Utku Ünver, " Kidney Exchange and the Alliance for Paired Donation: Operations Research Changes the Way Kidneys are Transplanted," Edelman Award Competition, Interfaces, 2015, 45(1), pp. 26–42. http://pubsonline.informs.org/doi/pdf/10.1287/inte.2014.0766
23.   Roth, Alvin E., “Transplantation: One Economist’s Perspective,” Transplantation, February 2015,  Volume 99 - Issue 2 - p 261–264. http://marketdesigner.blogspot.com/2015/02/an-economists-perspective-on.html

26.   Ambuehl, Sandro, Muriel Niederle, and Alvin E. Roth, “More Money, More Problems? Can High Pay be Coercive and Repugnant?,” American Economic Review Papers and Proceedings, May 2015, 105(5): 357-60.            .
27.   Fumo, D.E., V. Kapoor, L.J. Reece, S.M. Stepkowski,J.E. Kopke, S.E. Rees, C. Smith, A.E. Roth, A.B. Leichtman, M.A. Rees, “Improving matching strategies in kidney paired donation: the 7-year evolution of a web based virtual matching system,” American Journal of Transplantation, October 2015, 15(10), 2646-2654 http://onlinelibrary.wiley.com/enhanced/doi/10.1111/ajt.13337/ (designated one of 10 “best of AJT 2015”)

29.   Melcher, Marc L., John P. Roberts, Alan B. Leichtman, Alvin E. Roth, and Michael A. Rees, “Utilization of Deceased Donor Kidneys to Initiate Living Donor Chains,” American Journal of Transplantation, 16, 5, May 2016, 1367–1370.
a.      Melcher, Marc L., John P. Roberts, Alan B. Leichtman, Alvin E. Roth, and Michael A. Rees, “We need to take the next step,” American Journal of Transplantation, forthcoming
30.   Stoler, Avraham,  Judd B. Kessler, Tamar Ashkenazi, Alvin E. Roth, Jacob Lavee, “Incentivizing Authorization for Deceased Organ Donation with Organ Allocation Priority: the First Five Years,” American Journal of Transplantation, Volume 16, Issue 9, September 2016,  2639–2645.
31.   Stoler, Avraham, Judd B. Kessler, Tamar Ashkenazi, Alvin E. Roth, Jacob Lavee, “Incentivizing Organ Donor Registrations with Organ Allocation Priority,”, Health Economics, April 2016 online http://onlinelibrary.wiley.com/doi/10.1002/hec.3328/full ; doi: 10.1002/hec.3328.


33.   Michael A. Rees, Ty B. Dunn, Christian S. Kuhr, Christopher L. Marsh, Jeffrey Rogers, Susan E. Rees, Alejandra Cicero, Laurie J. Reece, Alvin E. Roth, Obi Ekwenna, David E. Fumo, Kimberly D. Krawiec, Jonathan E. Kopke, Samay Jain, Miguel Tan and Siegfredo R. Paloyo, “Kidney Exchange to Overcome Financial Barriers to Kidney Transplantation,” American Journal of Transplantation, forthcoming. http://onlinelibrary.wiley.com/doi/10.1111/ajt.14106/full

Friday, December 30, 2016

Repugnance watch: China Bans Its Ivory Trade, Moving Against Elephant Poaching

The NY Times has the story: China Bans Its Ivory Trade, Moving Against Elephant Poaching

"China announced on Friday that it was banning all commerce in ivory by the end of 2017, a move that would shut down the world’s largest ivory market and could deal a critical blow to the practice of elephant poaching in Africa.

The decision by China follows years of growing international and domestic pressure and gives wildlife protection advocates hope that the threatened extinction of certain elephant populations in Africa can be averted.

“China’s announcement is a game changer for elephant conservation,” Carter Roberts, the president and chief executive of the World Wildlife Fund, said in a written statement. “With the United States also ending its domestic ivory trade earlier this year, two of the largest ivory markets have taken action that will reverberate around the world.”

According to some estimates, more than 100,000 elephants have been wiped out in Africa over the past 10 years in a ruthless scramble for ivory driven by Chinese demand.
...

Wildlife advocates have said for years that the most important step in putting poachers out of business would be shutting down the ivory industry in China.

The advocates have promoted long-running public campaigns to shame China and raise questions about its global responsibilities, at a time when China has been assuming a higher profile on the world stage. But the success of the new policy depends on how strictly it is enforced."


The American Kidney Fund, in the NY Times, and riposte from the AKF

In a nuanced back and forth, the NY Times has suggested that the American Kidney Fund is abusing its status as a charity for patients who can't otherwise afford dialysis by only encouraging applications from patients at clinics which contribute to the AKF. They reply that this isn't the case.

Here's the NY Times story: Kidney Fund Seen Insisting on Donations, Contrary to Government Deal

"The American Kidney Fund is one of the largest charities in the country, with an annual budget of over $250 million. Its marquee program helps pay insurance premiums for thousands of people who need dialysis, a lifesaving and expensive treatment for kidney failure.
"The organization has earned accolades for its efficient use of the money.
"Under an agreement with the federal government, the Kidney Fund must distribute the aid based on a patient’s financial need. But the charity has resisted giving aid to patients at clinics that do not donate money to the fund, an investigation by The New York Times has found. The actions have limited crucial help for needy patients at these clinics. The agreement governing the relationship between the group and the companies forbids choosing patients based on their clinic."
*****************
Here's the AKF's response: Our response to Sunday’s New York Times article

"An article in the business section of Sunday’s New York Times presented a factually incorrect and unfair picture of the American Kidney Fund (AKF) and the lifesaving work that we do through our Health Insurance Premium Program (HIPP). We have reached out to the Times to request corrections on the most serious factual errors and misleading statements. In the wake of this article there are several key points that we feel are essential to emphasize:
  • Since we are a charitable organization, we do ask all providers to contribute to our program—but we never require it.
  • We have never turned away a patient who is financially qualified to receive a grant, and we never will turn away such a patient.
  • We never condition our issuing of grants on whether a provider has contributed to AKF, and fully 40 percent of dialysis providers with patients receiving help from AKF don’t contribute anything to AKF.  
  • There is no “earmarking” of donations.
  • HIPP has firewalls in place to protect the integrity of the program."

******************
The agreement linked to in the NY Times article (to put it in context) is  Advisory Opinion No. 97-1  of the Office of Inspector General of the U.S. Department of Health & Human Services.

Thursday, December 29, 2016

Living donor advocate Sigrid Fry-Revere has an updated proposal

Sigrid Fry-Revere writes to me about her updated living donor proposal:
"The big advantage of this proposal are as follows: 1) It helps those in need of organs who need help most — those at the front of the waiting list. These people, if they had a way of finding a living organ donor on their own, would have done so before they made it to the front of the waiting list 2) It follows the distributive justice model of the original NOTA and UNOS design (same as for deceased donation — help those in most need first). 3) Because it doesn’t help everyone, it is much more affordable (possibly even saves money within the first year instead of just 5 or 10 years down the line). 4) It can be phased in without creating a whole new bureaucracy because it includes incentives for OPOs to do the work.  And, 5) perhaps most importantly, this proposal could be implemented under the current law through regulation.  It could be done by Congress, but does not require an act of Congress."

You can find it here: The Save Lives, Save Money Now! Proposal Specifics and Background

The highlights:
"Specific Elements: • Follow original intent of NOTA and have Medicare help patients in greatest medical need first and according to UNOS current wait list criteria by:
(a) paying expenses of donors willing to give to top match in their region, and
(b) paying the Organ Procurement Organizations (OPOs), which currently
match deceased donor organs with recipients, to arrange living matches as
well.
Create living donor registry that allows donors at any time after their donation to put themselves AND / OR one relative to the front of the list in the region where the recipient lives (e.g. voucher system, but national. Waiting list points to be determined by UNOS)."
*************

Here is her organization's home page: http://www.helplivingdonorssavelives.org/ and here is another: http://www.stoporgantraffickingnow.org/

Wednesday, December 28, 2016

Repugnance watch: Wedgwood vase could be saved from export after culture minister intervenes

Can cultural treasures be sold to foreign buyers?  The Telegraph has the story:
 Wedgwood vase could be saved from export after culture minister intervenes

"The black “Basaltes” vase was put on sale at Christie’s in July by Anne Makeig-Jones, a descendant of Wedgwood.
...
"The decision to defer the export licence follows a recommendation by the Reviewing Committee on the Export of Works of Art and Objects of Cultural Interest, administered by the Arts Council."
******************

See my earlier post: Market for (smuggled) cultural treasures

Tuesday, December 27, 2016

U.S. Renal Data System 2016 annual report (data for 2014)

USRDS 2016 annual report
This year’s report provides data from 2014

highlights from the report include:
  • There were 120,688 newly reported cases of end-stage kidney disease, representing a slight increase of 1.1 percent compared to 2013. At the end of 2014, there were 678,383 dialysis and transplant patients receiving treatment for end-stage kidney disease, up 3.5 percent from 2013.
  • Among all patients who currently receive hemodialysis, use of an arteriovenous fistula, a surgically created vein used to remove and return blood during dialysis, since 2003, has increased from 32 percent to 63 percent. Arteriovenous catheter use has also declined from 27 percent to 18 percent during this period.
  • Medicare spending for beneficiaries ages 65 and older who have chronic kidney disease exceeded $50 billion, representing 20 percent of all Medicare spending in this age group. Total Medicare fee-for-service spending in the general Medicare population increased by 3.8 percent in 2014 to $435.6 billion, with $32.8 billion, or 7.2 percent, of that overall spending accounting for end-stage kidney disease patients. Compared to 2013, the costs of Part D claims and skilled nursing facility care in 2014 grew at the fastest rates of 21 percent and 5.5. percent, respectively.
  • Prior to 2013, Medicare spending on hospice care in end-stage kidney disease patients had been experiencing one of the highest rates of growth of any category of Medicare spending, but this spending declined by 6.3 percent in 2014.
  • As of December 31, 2014, the kidney transplant waiting list increased by 3 percent over the previous year to 88,231 candidates, of which 83 percent were awaiting their first kidney transplant. With less than 18,000 kidney transplants performed in 2014, the active waiting list was 2.8 times larger than the supply of donor kidneys.
An interesting note on kidney transplants is a relatively recent initiative called kidney paired donation,” Saran says. “The initiative is aimed at increasing the availability of living donor transplants, and in its simplest form is essentially when two living donors do not match with the respective recipients and decide to perform an exchange whereby the donation goes to each other’s compatible recipient. Kidney paired donation transplants have risen sharply in recent years with 552 performed in 2014, representing 10 percent of living donor transplants that year.”

Monday, December 26, 2016

Matchmaking nudges and noodges in the internet age

The internet dating site JSwipe has a program called ParentPay. The website has a banner reading (subtly) "We want grandchildren."

Here's the text of the ad that made its way into my email:

"Hey Mom, Hey Dad,

Hanukkah is here! We have the perfect gift. 

We both know your kid is a catch and anyone would be lucky to date them. It's time to give your son or daughter (friend, cousin, or grandkids) the right tools for finding *Jewish* love in the digital age --- and fast track your way to grandkids.

JSwipe is the #1 Jewish dating app with nearly one million users across the world. We're responsible for hundreds of marriages and want your kids to be next! Really. That's our job.

JSwipe offers a First Class membership that provides premium features to maximize the impact of their dating experience. Better matches = better dates. While their unpaid internship is great for their career, it's not so great for helping them afford a First Class membership.

That's where you come in!

Because you're such incredible parents, we're offering you the opportunity to gift your child one-year of JSwipe First Class for $99, less than half of what it usually costs! Consider it their "love allowance." The perfect Hanukkah gift! The gift of love that keeps on giving.

Would you be happy to have a new guest at your next family holiday? We know Bubbe would. Don't Passover this opportunity! "

*************

JSwipe has a free mode and a paid mode, and the paid mode gives more signals (superswipes) that can be sent per day, etc.  Here's a review

Sunday, December 25, 2016

The Vatican celebrates Frank Delmonico

Here's the (November 29th) announcement from the New England Organ Bank:
We are very proud to announce that New England Organ Bank's Chief Medical Officer, Dr. Francis Delmonico, was inducted into the Pontifical Academy of Sciences this week.
"With this lifetime appointment, he becomes one of just 70 leaders in the field of science today to have this honor. Among other members are theoretical physicist Stephen Hawking and Human Genome Project founder Francis Collins. In addition to his long career as a kidney transplant surgeon, Dr. Delmonico leads the World Health Organization's efforts to prevent transplant tourism and organ trafficking."

Here's Frank's page at the Pontifical Academy: Francis L. Delmonico

Here's a photo he sent me:

Saturday, December 24, 2016

Kidney exchanges within a single transplant center

In the emerging ecology of kidney exchange in the U.S., there are more and more exchange transplants that are  "internal" exchanges among the patient-donor pairs of a single transplant center..

Here's a recent news story that's indicative of that:
The first internal paired kidney exchange completed at LLUMC, chain started by altruistic donor-- Two adults now have a longer, healthier life ahead of them thanks to two complete strangers.

"The first internal paired kidney exchange was successfully completed at Loma Linda University Medical Center (LLUMC) late last month.
"The chain began with an altruistic donor from Orange County who gave a kidney to an individual from the Inland Empire. That recipient had a donor that was not a compatible match and was able to give to another individual in need of a kidney. The four surgeries took place Monday, Nov. 28.
...
"Living-donor chains have the potential to dramatically reduce transplant waiting times for thousands of patients,” said Rafael Villicana, MD, a transplant nephrologist and the medical director of the kidney transplant program at Loma Linda University (LLU) Transplantation Institute. "This is the best way for patients with incompatible donors to be transplanted quickly and achieve the best results."Having a living donor can eliminate the wait. But in one-third of such cases, a transplant can't be done because the immune systems of the patient and a willing donor don't match.
"Each chain begins when an altruistic person steps forward to donate a kidney, expecting nothing in return.
"While Loma Linda has been involved in other kidney exchanges, this is the first that was all done in house.

"Approximately 130 kidney transplants are performed at LLUMC annually."

Friday, December 23, 2016

Early admissions continues to grow at Harvard and elsewhere

The Harvard Gazette reports: 938 admitted early to College Class of 2021
Early action is ‘new normal’ for undergraduate admissions, Fitzsimmons says

"Applications for early action at Harvard College rose 5 percent this year to 6,473, and 14.5 percent, or 938 students, were admitted to the Class of 2021. Last year, 6,167 applied early, and 14.8 percent, or 914 students, were admitted.

“Early admission appears to be the ‘new normal’ now, as more students are applying early to Harvard and peer institutions than ever before,” said William R. Fitzsimmons, dean of admissions and financial aid. “At the same time, we have continued to stress to applicants, their families, and their guidance counselors that there is no advantage in applying early to Harvard. The reason students are admitted — early or during the regular action process — is that their academic, extracurricular, and personal strengths are extraordinary.”

The admissions committee is careful to ensure that only those students who are, in Fitzsimmons’ words, “100 percent certain” to be admitted in regular action are admitted early. “This is particularly important because in recent years we have received record numbers of applications,” said Fitzsimmons. Last year, 39,041 students applied for admission to the Class of 2020. Ten years ago, 22,754 students applied for admission to the Class of 2010."
****************

Maybe the growth in early admissions is happening at Stanford too, but apparently we're not saying:
In break from past, Stanford declines to release early admissions data

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In the NY Times, Frank Bruni complains of the stress it causes the children of his friends: The Plague of ‘Early Decision’

Thursday, December 22, 2016

NLDAC announces a trial of Lost Wages Reimbursement for Living Organ Donors (funded by the Arnold Foundation)

Here's some good news in an email that arrived yesterday from NLDAC, the National Living Donor Assistance Center (about which I have had several recent and not so recent posts).  Up until now, NLDAC has only been able to provide travel assistance to some means-tested kidney donors. The new trial will allow the effect on donation of also reimbursing lost wages.

Lost Wages Reimbursement for Living Organ Donors Trial Announced



FOR IMMEDIATE RELEASE
Media Contact:
Diane Mossholder
703-414-7870
diane.mossholder@asts.org
 
Arlington, VA – December 21, 2016: The National Living Donor Assistance Center (NLDAC) announces that it will conduct a randomized controlled trial that will assess the impact of interventions intended to remove financial barriers to living organ donation through wage reimbursement. 

NLDAC was established in 2007 to administer a grant funded by the U.S. Health Resources and Services Administration to provide greater access to transplantation for persons who want to donate, but cannot afford the travel and subsistence expenses associated with donation. It currently provides travel and subsistence funds for nearly 1000 people per year who wish to become living organ donors to offset their expenses related to donation.

Living donors usually travel at least three times to the transplant center and are required to stay near the hospital for up to two weeks after the transplant surgery for monitoring. They are unable to work during their donation and recovery time, and the loss of wages can be a significant financial barrier. This study will provide data to help answer the question of whether removing that barrier increases living donation in the United States.

The Laura and John Arnold Foundation provided funding for the trial, which will be administered by the American Society of Transplant Surgeons in partnership with the Arbor Research Collaborative for Health, with additional researchers from University of Arizona, the Wharton School of the University of Pennsylvania, and Mayo Clinic Arizona.  Five transplant centers with active living donor transplant programs will participate in the trial.

“Removing financial disincentives to organ donation has long been a goal of ASTS,” said Timothy L. Pruett, MD, president of the American Society of Transplant Surgeons (ASTS). “I’m pleased that we are able to conduct this trial and gather data on the extent to which the prospect of lost wages discourages donors from coming forward or even being asked to consider donating. With more than 120,000 people waiting for an organ in the United States, we must do everything possible to ensure that those willing to donate are able to do so without financial harm to themselves or their families.”

“Our study design – potential transplant recipients will be randomly offered or not offered wage reimbursement for their donors – incorporates a high level of scientific rigor,” noted Robert M. Merion, MD, president and CEO of Arbor Research Collaborative for Health. “When the study is completed, we will know much more about the role played by lost wages as a barrier to living organ donation, and the extent to which removal of that barrier leads to more living donor transplants and improved lives for patients. We are delighted that the Laura and John Arnold Foundation has recognized the societal importance of this question.”

The trial will begin in 2017 and is projected to run through 2018.

###
About NLDAC
The National Living Donor Assistance Center (NLDAC) was established in 2007 to provide greater access to transplantation for persons who want to donate, but cannot otherwise afford the travel and subsistence expenses associated with donation. The program is funded by grant number U13HS07689 from the Healthcare System Bureau, Health Resources and Services Administration, U.S. Department of Health and Human Services. It is administered by the American Society of Transplant Surgeons, University of Arizona Health Sciences, Arbor Research Collaborative for Health, Washington University – Missouri, and Mayo Clinic – Arizona. For more information, visit LivingDonorAssistance.org.
 
About ASTS
Established in 1974, the American Society of Transplant Surgeons (ASTS) is the oldest abdominal organ transplant society, serving approximately 1,800 surgeons, physicians, scientists, pharmacists, coordinators, and advanced transplant providers. ASTS is committed to fostering the practice and science of transplantation and guiding those who make policy decisions by advocating for comprehensive and innovative solutions to the needs of our members and their patients. ASTS is a nonprofit organization in Arlington, Virginia. For more information, visit ASTS.org.

About Arbor Research
Arbor Research Collaborative for Health is committed to improving patient care through research that shapes medical policies and practice. In particular, Arbor Research conducts health outcomes research on chronic disease and end-stage organ failure, with expertise in biostatistical analysis, clinical practice, health economics, public policy, database management and integration, and project coordination. Through research projects that are national and global in scope, Arbor Research’s scientific collaborations provide valuable and timely information to the worldwide health care community. A full description of the project portfolio is available at ArborResearch.org.
 
About the Laura and John Arnold Foundation
LJAF is a private foundation that is working to improve the lives of individuals by strengthening our social, governmental, and economic systems. It has offices in Houston, New York City, and Washington, D.C. www.arnoldfoundation.org.

Wednesday, December 21, 2016

Organ donation and transplantation in Japan

The Chicago Tribune has an article (reprinted/translated?) from Japan:
Japan badly lags world in organ transplants
Yukiko Takanashi and Sakae Sasaki, (c) 2016, The Japan News/Yomiuri
(c) 2016, The Japan News/Yomiuri

"In July 2010, the revised Organ Transplant Law came into effect, enabling organ donations after the brain death of children younger than 15. However, there have been only 12 cases of organ donation by children under 15 since then. According to the Japanese Society for Heart Transplantation, 29 Japanese children under 18 traveled abroad for a transplant between 2010 and June 2016. That is more than twice the number that received a donor organ in Japan.
...
"In 2015, the organ donation rate in Japan stood at 0.7 people per million people. Spain had the highest rate at 39.7 people per million. The gap between Japan and other major countries remains wide. The rate stood at 28.5 people per million people in the United States, 27.5 in France, and 20.2 in Britain.
...
"The so-called Wada transplant, said to be Japan's first transplant from a brain-dead donor, was conducted in 1968 by Juro Wada at Sapporo Medical University. The boy who received the donor's heart died, and Wada was charged with murder. Questions were raised as to whether the organ donor had really been brain dead, and the case stirred a major controversy over the definition of death. For more than 30 years after that, no transplants from brain-dead donors were performed in Japan."
**************

Deutsche Welle has a related story:
Why organ transplant is so difficult to carry out in Japan
Restrictive laws, religious concerns and a lack of knowledge about donating organs mean that medically-sophisticated Japan lags well behind other nations in life-saving operations. Julian Ryall reports from Tokyo.

Tuesday, December 20, 2016

Ontario's new surrogacy law (and other laws regarding who is the parent of a child)

In Canada, Ontario has just (last month) amended some of its laws regarding the definitions of who are the parents of a child, with implications for surrogacy, among other things.
Bill 28 Projet de loi 28
An Act to amend the
Children’s Law Reform Act,
the Vital Statistics Act
and various other Acts
respecting parentage and
related registrations

Here's the part on surrogacy, which seems to imply that surrogacy in Canada will be subject to legal risk about who the parents are until the child is seven days old.

"7. Where a surrogate and one or more intended parents of
a child to be carried by the surrogate enter into a surrogacy
agreement and a child contemplated by the
agreement is born, the intended parents become the
parents of the child and the surrogate ceases to be a
parent of the child if specified conditions are met.
These conditions include that there are no more than
four intended parents under the agreement, that each of
the parties to the agreement received independent legal
advice before signing, and that the child is conceived
through assisted reproduction. The change in parentage
is also contingent on the surrogate giving written consent
relinquishing the surrogate’s entitlement to parentage
of the child, but the consent may not be given
before the child is seven days old. Until that time, after
the child is born the surrogate and the intended parents
share parental rights and responsibilities respecting the
child, unless the surrogacy agreement provides otherwise.
If the surrogate does not or cannot give consent,
an application may be made to the court for a declaration
of parentage respecting the child. Although a surrogacy
agreement may be used as evidence of parental
intent, it is unenforceable in law. (Section 10)"
**********

Here is some commentary on that and other parts of the law, from the blog Above the Law:
Ontario’s New Surrogacy And Sperm Donation Law Is Both Awesome And Terrible

Monday, December 19, 2016

Crowdfunding For IVF

NPR has a story which involves a combination of very modern transactions:
Please, Baby, Please: Some Couples Turn To Crowdfunding For IVF

"They began with a less costly and less invasive option: IUI or intrauterine insemination. That's where sperm is inserted with a catheter directly into the woman's uterus at the time of ovulation. The procedure costs, on average, just under $1,000 a try.
...

"The next step they took was to try in vitro fertilization, or IVF. This involves fertilizing eggs with sperm in a laboratory dish, then transferring the embryo into the woman's uterus. It can cost $15,000 to $20,000 each try.

"At first, Greg says, they thought about traveling overseas for more affordable treatments, but travel costs would have gobbled up any savings. So, they went online instead, to the crowdfunding site GiveForward. "