The interesting aspects of Steve Job’s alleged liver transplant

A surgeon expresses the thoughts on the mind of every physician who’s heard that Steve Jobs received a liver transplant (per WSJ) for a metastatic neuroendocrine tumor …

What's wrong with Steve Jobs, revisited : Respectful Insolence

… How many people are capable of getting themselves listed for transplant in a state nearly 2,000 miles away from their home? When a liver becomes available, there isn't much time to get to the hospital. That means a person seeking a transplant in another state either has to stay in that state for as long as it takes to get an organ or be within a distance to be able to fly there within a very short period of time. Moreover, organs eligibility and availability are determined by the United Network for Organ Sharing, which maintains the donor lists. When an donor is identified, regional and state organizations (in my home state, for example, Gift of Life, where one of my relatives works), obtain consent, arrange for organ harvest, and decide, based on fairly strict criteria published by UNOS regarding medical need and practical matters like how long it will take to get the organs out and to the hospitals where they are needed, which people on the waiting list for the state will receive each of the organs harvested. If this story is true, what Jobs did is not illegal, but it sure does leave an unpleasant stench of the rich and powerful taking advantage of regional differences in organ availability, perhaps at the expense of a lifelong Tennessee resident who needs a liver…

… Worse, the indication is somewhat shaky. For one thing, as was pointed out in the article, neuroendocrine tumors are generally very slow growing and take a long time to metastasize. One of the more "common" subtypes of the rare neuroendocrine tumor in particular, a carcinoid of the appendix or the rectum, is particularly prone to metastasize to the liver and is notorious for causing carcinoid syndrome, which is due to serotonin secretion by these tumors and causes flushing, diarrhea and other unpleasant symptoms…

In the United States organs are gifts from the dead to strangers. Most of the donors are not wealthy. In this country we don’t, yet, seem to have much of a commercial market in organs – though the organ trade is growing in much of the world (the sale of sperm and eggs, by contrast, is a very active US market, sure to be increasingly global).

The story of Jobs liver transplant has two interesting aspects. Both demonstrate what power can achieve.

One aspect is that it was kept pretty much out of the media, though clearly thousands must have known the details. In this regard it resembles the seven month media silence about the imprisonment of a senior NYT journalist in Taliban-occupied Pakistan . The modern world is better at keeping secrets than many imagine.

The second aspect is that it shows that we need to talk more about organ distribution. The rich will always have access to more health care options – though, as in this case, it may lead them to make medically sub-optimal choices. On the other hand, organs are a gift from people who are usually not themselves powerful. Given two equally appropriate candidates, one powerful and one not, I’d rather my liver go to the less privileged. It’s my way of spitting in the face of a fundamentally unjust universe.

We should be talking about the organ trade.

Neda Soltani - an Iranian student

Neda Soltani - Wikipedia and Facebook.

The Wikipedia article states that her family donated her organs.

Why do we tolerate so many Apple bugs?

It's not hard to find bugs in OS X. Just spend a few minutes with Parental Controls for example. If Apple offered a bounty for bugs they'd go broke.

So why don't Apple's customers bitch more?

Is it because ...

1. They don't experience the bugs.
2. They run into problems, but don't realize they're bugs. (Users think they've done something wrong).
3. They run into the bugs, but don't care.
4. They've given up hope.

I'm guessing it's all of the above.

Unfortunately those bugs aren't going anywhere unless customers (that's us) get much more demanding.

It's like French Pastries in Minneapolis. There are a few that aren't terrible, but there are none half as good as those sold in the English suburbs of Montreal (much less downtown!). The difference is the standards of the consumers.

Please software buyers, please, please, please be more demanding!!

Hell frozen: a GOP columnist says something non-raving about health care

Ross Douthat is the NYT’s latest attempt to find a GOP-friendly columnist who’s not a raving loon.

He writes of health care today, and he’s only lightly raving …

Ross Douthat - The Hard Part - NYTimes.com

…. In a world without political constraints, it wouldn’t be hard to create a fiscally responsible alternative. Conservatives would encourage people to self-ration, by putting a certain number of health care dollars directly in their hands and leaving the rest to market forces. Liberals would ration more directly, by slow-walking Americans into a public health care system, whose cost-conscious, evidence-weighing bureaucracy would pay for procedure X but not procedure Y, surgery P but not prescription drug Q.

But of course Americans want their health care system to bankroll the entire alphabet — and they definitely don’t want to think about “market forces” when they’re going to the doctor. They might be willing to pay slightly higher taxes to bankroll a reform, but their ideas about what “reform” should mean are far more expensive than what health care experts have in mind. Indeed, as William Galston noted recently, the best way to satisfy the public’s health care preferences would be to start with whatever the experts — right and left alike — say is required to keep the system solvent and do exactly the opposite…

Of course the choices are not as stark as Douthat pretends. He is a GOP voice, after all. On the other hand, my champion, Paul Krugman, isn’t as forthcoming as he might be. Krugman is very careful to skirt the reality of how health care services will be delivered -- if we actually win this one.

I’m 95% sure Krugman understands that what we will eventually guarantee every American is a ticket on the Manhattan subway, not the keys to a new Lexus. Everyone will get at least Quebec-quality healthcare, which is what I like to call “crummy care”. People with money will get what my family enjoys today, people without money get the Spartan version, and nobody gets “crappy care”. (As an aside, Subway Care may have better outcomes than Lexus Care, but that’s another post.)

Douthat is right that the average American’s ideas of “reform” are a delusion. Right wingers won’t mention that because they fear Obama will succeed – and maybe they hate that more than they love America. The good guys won’t talk about it because they suspect informed voters will freeze in the headlights -- and get squashed.

I’m not running for office though, so I can mention it.

Isn't the NYT's Roger Cohen a bit old for this?

The NYT's Roger Cohen was criticized a few month's for a relatively positive spin on Iranian culture and politics, particularly claims that Iran was not predictably anti-semitic. He was portrayed by some as naive, removed from the realities of the Iranian street.

Now he's dodging tear gas and bullets on those streets ...

Roger Cohen - A Supreme Leader Loses His Aura as Iranians Flock to the Streets - NYTimes.com

... Just off Revolution Street, I walked into a pall of tear gas...

... I did what I could and he said, “We are with you” in English and with my colleague we tumbled into a dead end — Tehran is full of them — running from the searing gas and police. I gasped and fell through a door into an apartment building where somebody had lit a small fire in a dish to relieve the stinging.

There were about 20 of us gathered there, eyes running, hearts racing. A 19-year-old student was nursing his left leg, struck by a militiaman with an electric-shock-delivering baton. “No way we are turning back,” said a friend of his as he massaged that wounded leg."...

Cohen is no youngster. Who the heck sent him to Iran?!

Apple's iPhone Calendar makes me miss my parents' anniversary

I blogged about this four months ago, but it's the Apple gift that keeps on giving.

For the seven or more years that I used various versions of Gorilla Haven's DateBk on my Palm, I got 2-3 week warnings of birthdays, anniversaries on the like.

It was great. I rarely missed a card or an event

Then I got my 21st century iPhone, with a locked down, no API, Apple authored Calendar.app. A calendar that allows a maximum 2 day reminder of events.

Events like my parents' anniversary, now 2 days away.

Two $!#$#$ days!

That's the problem with devices built by children. In their world, 2 days is a long time.

Nettie, how many days warning does the Pre calendar allow you?

Update: It's unchanged in iPhone 3.0.

Update 6/20: The Pre isn't all that much better - suprisingly!
Via Nettie:

... for all-day events in the Pre calendar you can remind 1/2/3/7 days before. For meeting-type events you can remind 5/10/15 mins and 1 day...

It must be something in Cupertino water supply.

Why smart software can be so stupid – the Microsoft Access example

This is one of my favorite examples of the wrong way to deliver smart software.

Microsoft Access 2003 (2007 too I think) tries to be smart when importing an Excel spreadsheet. Rather than look at Excel’s data types, it looks at the data in the first 25 rows. Then, based on the patterns it sees there it infers a data type … (emphases mine)

Import, export, and link data between Access and Excel - Access - Microsoft Office Online

Data type  By default, Access scans the first 25 rows to guess the data type of the column. If Access encounters values beyond the 25th row that are not compatible with the chosen data type, it will simply ignore those values and not import them.

… You cannot change the data type of the destination field during the import operation.

It’s the combination of oh-so-smart cleverness (infer the data type) and pure stupidity (no user override of the inferred type) that makes this such a priceless example.

The lessons?

First, be very conservative about making your software “smart”. In general, you’ll make it stupid.

Second, if you’re going to make your software smart, let the user override the clever code.

It’s not like Access is a consumer tool anyway.

I can’t measure what an amazing amount of pain this stupid design has caused me over the years. It even afflicts linking to a spreadsheet from Access.

H1N1 (swine) flu – it’s back in Minnesota

Actually, it never went away – which is a bit weird.

We’re seeing a fair amount of it in Minnesota.  This blurb came from the University of Minnesota and it’s not bad as these things go.

Emergency Preparedness : Academic Health Center Office of Emergency Response

As I’m sure you’ve been hearing in the news, spread of the novel H1N1 influenza (swine flu) is increasingly common and occurring throughout Minnesota. I thought it would be a good time to provide you with an update.

Currently all patients in Minnesota with flu symptoms such as fever, cough or other respiratory symptoms are considered likely to have the H1N1 novel influenza virus. The Minnesota Department of Health is now only conducting diagnostic testing on severe, hospitalized cases of possible influenza.

Given the increasing spread of H1N1, this is a good time to be reminded of the following:

• If you are sick with flu-like symptoms, you should stay home. You will be considered infectious for 7 days after the onset of symptoms or 24 hours after you are symptom-free, whichever is longer.
• Use excellent hand washing techniques and cover your cough. It is our best first line of defense against the spread of influenza.
• If you are pregnant, immune-suppressed or have a chronic health condition such as diabetes, heart disease, asthma or emphysema, you are at increased risk for severe flu or flu complications. You should contact your health care provider if you have flu symptoms or have been exposed to people with flu symptoms.
• Keep hard surfaces such as workstations, door handles and bathroom surfaces clean using household disinfectant.

The following links can also help answer any questions you may have:

• General Information
• Camp Recommendations
• What to do if you get flu like symptoms
• General Q&A

Pretty good, but their list of increased risk is not complete. This one is from the MN Dept of Health

• Children aged less than 5 years, particularly those less than 2 years of age;
• Persons aged 65 years or older;
• Women who are pregnant;
• Adults and children who have chronic health conditions including chronic lung problems such as asthma, metabolic diseases such as diabetes, heart disease, kidney disease, liver disease, and certain blood diseases;
• Adults and children who have a lowered immune system from medications or chronic health conditions such as HIV;
• Residents of nursing homes and other chronic-care facilities.

The implication, not explicitly stated, is that if you’re not at increased risk you’re supposed to stay home.

The CDC and departments of health need to do a much better job of providing guidance about home management of H1N1 flu -- including a description of the expected course and instructions to contact a physician if the disease is NOT following the expected course.

As I’ve mentioned before, I think the CDC has blown this one. We’re just lucky this flu hasn’t been unusually severe – so far. Though any influenza is nasty enough.

Fear in China's government

I don't think this has much to do with porn ...

China lambasts Google again for disseminating porn - Ars Technica

.... Google is guilty of 'disseminating pornographic and vulgar information' and should stop immediately, according to China's Internet Illegal Information Reporting Center. The organization made the accusation Thursday after making several requests to Google to remove what it has deemed inappropriate content, and said that Chinese authorities should take action if Google won't conduct a 'thorough clean-up"...

China's economy is under severe strain. International coverage of the 20th anniversary of the Tiananmnen square protests must have leaked back into China. China is mandating use of government controlled filtering software on all computers. South Korea is a huge cultural influence in China, and the inevitable collapse of North Korea will eliminate China's last remaining communist ally. The Iranian protests must be unnerving, and disturbingly reminiscent of Tiananmen and the fall of the Berlin wall. Lastly, with Bush gone, it's harder to find an inspiring example of a criminally stupid western government.

Installing monitoring software and attacking Google are not things the Chinese communist government does when it's feeling confident.

Interesting times.

Apologies to politicians of 1990s Japan and 1930s America

In 1930's America, Krugman shows us that a big majority of Americans thought it was critically important that Roosevelt try to balance the budget.

So he did.

And the Great Depression returned.

Today Americans want to make the same mistake, just as the Japanese did in the 90s. We need to cut the past politicians who blew this decision a bit of slack. It's hard to fight a national urge to suicide.

We Americans have less excuse than the people of that era. I hope Obama can convince America not to repeat the same old mistakes.

The CDC flunks the H1N1 test

The CDC is whining ...

Health Care Workers Muffed H1N1 Flu Precautions - ABC News

... A snapshot of the health care workers who came down with the H1N1 flu in the first few weeks of the outbreak suggests that proper infection-control practices weren't uniformly followed, the U.S. Centers for Disease Control and Prevention said today....

Bah, humbug!

I've been checking the CDC's web site for provider oriented recommendations over the past few months.

Shall I be delicate?

Heck, no.

The CDC's H1N1 recommendations were, and have been, a fuzzy pile of worthless pap. They've provided no practical guidance on managing patients with fever and cough, very little useful information on infection control, almost nothing on diagnostic procedures and criteria, and very few concrete therapeutic recommendations.

They've weaved, dodged, hemmed and hawed.

And now they're whining.

Ptui!

A good thing happens: fiber optic connections to the Horn of Africa

We’ve had a bit of a good news deficit lately, though there’s no doubt things could be (much) worse.

So this bit of good news is most welcome. Among other things it’s potentially a significant business opportunity for Minnesota’s large Somali and Ethiopian communities.

Emphases mine.

Economist.com – June 2009

… THE Horn of Africa is one of the last populated bits of the planet without a proper connection to the world wide web. Instead of fibre-optic cable, which provides for cheap phone calls and YouTube-friendly surfing, its 200m or so people have had to rely on satellite links. This has kept international phone calls horribly overpriced and internet access equally extortionate and maddeningly slow.

But last week, in the Kenyan port of Mombasa, a regional communications revolution belatedly got under way when Kenya’s president, Mwai Kibaki, plugged in the first of three fibre-optic submarine cables due to make landfall in Kenya in the next few months. They should speed up the connection of Burundi, Rwanda, Tanzania and Uganda, as well as bits of Somalia, Ethiopia and Sudan, to the online world. Laying the cable cost $130m, mostly at the Kenyan government’s expense; Mr Kibaki hailed the event for bringing “digital citizenship” to his countrymen.

The new cable will compete with the other two to be welcomed onshore, perhaps later this year. The hope is that the high bandwidth and fierce competition between the three cables will slash costs and help create new business. With a mass of young English-speakers only an hour or two ahead of Europe’s time zones, east Africa should, with luck, be well-placed to compete with India and Sri Lanka for back-office work for Western companies. Broadband, say its promoters, will transform the lives of millions in countries such as Kenya and Sudan, almost as dramatically as mobile telephones have done—all the more so because of the parlous state of east Africa’s more old-fashioned infrastructure, especially roads and railways.

A few call centres have already got a toehold in the market and expect to expand fast when the cables arrive. Security experts say cybercrime and junk mail may increase too. Still, mobile telephones, not internet cafés, will continue to grow the fastest. The number and quality of handsets should rise. In a couple of years even fairly poor east Africans may be getting knowledge, news and entertainment on robust versions of existing Apple iPhone and Palm Pre models. That, in turn, may prove to be a political as well as economic boon, as information gets shared “horizontally”, among people rather than “vertically” via media outlets run by the political and commercial elites.

Rwanda may emerge as a winner. Its president, Paul Kagame, has long identified the internet as a key to his country’s development, offering concessions to software companies setting up there. But Kenya also wants to cash in. It has abolished sales tax on computers and in last week’s budget ended the sales tax on new mobile phones. It has also let businesses write off bandwidth purchases in the hope of dominating the regional internet market. That may make other countries push companies to drop their prices…

There will be problems of course. Stolen infrastructure, corruption, cybercrime, etc.

Even so. Change you can believe in.

Martha, what do you think?

The very cool Layar mobile augmented reality browser (for iPhone)

Flying in to MSP the other day I really wanted icons on the landscape. Click to find out what that lake is. Click to identify that ballpark.

Seems that’s coming sooner than expected, though perhaps not for plane use just yet …

Gizmodo - Layar: First Mobile Augmented Reality Browser Is Your Real Life HUD – Layar

Layar combines GPS, camera, and compass to identify your surroundings and overlay information on screen, in real time. It is available for Android now and it will be available for iPhone soon, but exclusively for the 3GS.

The reason is that Layar needs a compass to work, as Maarten Lens-FitzGerald—from developer SPRXmobile—tells us:

We are definitely going for the new iPhone 3GS because of the compass! We're aiming for release after summer, but we depend on Apple accepting it…

Yes, all those science fiction stories are now passe. I’m looking forward to when they incorporate the facial recognition module …

The backup problem – sometimes the backup isn’t worth the cost

Halamka has a great review of backup strategies and costs, but my favorite bit is in the last paragraph …

Life as a Healthcare CIO: Our Storage Backup Strategy

Over the past year, Harvard Medical School has worked with research, administrative, and educational stakeholders to develop a set of storage policies and technologies that support demand, are achievable in the short term and are affordable.

I recently gave a keynote at Bio-IT World where I described the HMS storage strategy to ensure scalability, high performance, and reliability.

Since that presentation, we've refined our strategy for replication/backup/restoration of data for disaster recovery. In many ways backup is a harder problem to solve and a more expensive project than data storage itself.

Our best thinking (a strawman for now that we are still reviewing with customers) is outlined on this slide. For databases and Microsoft exchange, we're using Data Domain appliances to replace tape …

…  Some departments have asked not to replicate at all, since it is cheaper to rerun an experiment than to replicate the terabytes of data each experiment generates. …

I recently sat through a fascinating recounting of a corporate IT outage. They thought they had sufficient redundancy, but there’s always a limit.

Backups aren’t just a problem for home users. Our current technologies don’t scale as well as one might imagine.

Gmail: I don’t love you any more, but we can still be friends

I’ve been using Gmail since the week it was “released”. There’s a lot I like about it, but I’ve finally decided it’s killing me.

There’s more than one set of problems, but the number one problem is the bloody obligate subject line threading model.

It wouldn’t be so bad if they used some kind of message unique identifier to implement usenet style threading. It would be immensely better if Gmail allowed me to edit the subject lines of incoming messages and thus to create new threads (like this).

In the current state though, it’s a killer. I have too much trouble picking out critically important messages from threads. Searches return the thread, and trawling through the thread is too error prone.

The obligate threading was and is a mistake.

There are other Gmail problems. Google’s only recently fixed up the Contacts model, and I despise the UI for creating mailing lists and working with Contacts. Gmail can be intermittently slow and unreliable – this past week has been very annoying. The IMAP implementation intersects badly with labels; my use of labels means Spotlight searches in OS X Mail.app return multiple instances of a single message.

There’s still a lot I like about Gmail, especially when I use it with iPhone Mail.app. I’m not going to abandon it, but I’m considering simplification measures. I might return to POP style access on OS X for example and use OS X Mail.app when I need to get real work done.

As long as Gmail was used primarily for personal email, their lowest common denominator approach wasn’t necessarily wrong. That’s often a good way to win. Now, though, Google wants to support large enterprises on their Google Apps platform. There are going to be more users like me.

If Google doesn’t start listening to its more demanding customers I won’t be the only one to start seeing other software.

Update: I realize that Gmail contributes to hiding messages in mis-identified threads by hiding the subject line on reply. Sigh.