Tuesday, November 25, 2014

The Virtue of an Imperfect Case

John McWhorter writes that because the Ferguson case is not a clear-cut case of police brutality, it is not the best case to highlight the problems of the relationships between law enforcement and minorities.

I disagree.

Not because I differ with Mr. McWhorter on the facts of the case, but because I think it is precisely this case's resistance to being cast as a simple case of an evil racist cop killing a perfectly innocent young black man that makes it a useful case to examine.

Unfortunately, it's not so simple. The problem isn't so much the actions of Darren Wilson during the stop (or the actions of Micheal Brown, but the confluence of factors that brought them together that day in emotional states such that this outcome was in play.

If it were a simple case of a rogue cop, the solution would be easy -- punish him, and try not to hire more cops like him.  If the criminal justice system failed to do so in the face of these facts, then that's a bigger, thought somewhat more manageable problem.

But that doesn't seem to be what's going on. It appears that Officer Wilson acted within the parameters of his job. And still, a man who didn't deserve to die was killed. That's a more difficult problem.

I wonder if some of the rage at the grand jury decision is that it denies us the simple scapegoat and the easy way out.  The statement is, "No, you're not going to get out of this just by punishing Darren Wilson. You're going to have to work on all the things that led these two people to where they were that afternoon."

I get the frustration that a young man can be killed with nobody held responsible. And expanding the zone of culpability can at times be a way to dodge personal responsibility and culpability.

Still, I think we need to absorb different lessons than, "Darren Wilson was a bad cop." And if it turns out he wasn't such a bad cop, I think that helps us ask the bigger questions.


Friday, November 21, 2014

FAQ Regarding The CFF's Recent Transaction

Judging by the comment thread here and other discussions I've seen online, there are some questions regarding the Cystic Fibrosis Foundation's recent announcement of selling its royalty rights to CF treatments developed by Vertex Pharmaceuticals for $3.3 billion.

Since I regularly (including now) ask other people to join me in supporting the CFF, I thought I would share how I see things. What follows is what my impressions are as a reasonably well-informed CF dad and CFF fundraiser.  While I'm doing my best to avoid any factual errors, I did not conduct any research for this other than reading the linked articles.  It may be necessary for me to revise this in light of some errors or omissions.

These answers are my own, and I do not speak for any of the pertinent organizations.

So, what's the deal?

Essentially, the Cystic Fibrosis Foundation provided Vertex with funds in exchange for royalty rights in any treatments that are developed with those funds.

In that time, Vertex has developed Kalydeco, which shows great promise in addressing a somewhat rare mutation of Cystic Fibrosis, and in combination with some other drugs, in treating the most common mutation of CF, which is what my daughter has.  This last treatment is working its way through FDA approval now.

CFF has elected to sell its claim on the royalties to Royalty Phamra for $3.3 billion.

Mutation?? Maybe you can give me a brief primer on Cystic Fibrosis.

Sure.

Cystic Fibrosis is a genetic disease.  In order for a child to have CF, both her parents must be carriers of the gene mutation.   If that is the case, any child of that couple would have a 25% chance of having the disease, a 50% chance of being a symptom-free carrier, and a 25% chance of not even being a carrier.

Within CF, there are various mutations, with D508 being the most common.

This mutation effects the way that cells absorb and process salt (the initially most apparent symptom is skin that is salty to the taste, and CF has been diagnosed via testing the salt content of the patient's perspiration -- the "sweat test.").

This causes a number of symptoms, most notably trouble in digesting fats and a thick mucous in the lungs that can very easily attract infections.  CF patients often have trouble gaining weight, leaving them weak to fight the infections, which is why the disease has been so deadly.

Advances in treatments over the past half century have raised the median survival age of CF patients from elementary school to approaching middle age.  These treatments attack the symptoms (antibiotics and breathing treatments for respiratory problems, enzymes for digestive problems).

There is particular excitement about the treatments recently developed by Vertex because they attack the root of the problem at the cell level.

OK.  When I gave money to CFF, I thought I was donating to find a cure, not help the foundation play in the stock market with Big Pharma. What gives?

Some time ago, the CFF adopted a strategy of partnering with certain drug companies to develop CF treatments.   They deemed this necessary for a couple of reasons:
  • The development of these treatments is largely a hit-and-miss proposition.  Years and years of expensive research can come up with nothing. There is a tremendous potential downside in performing this type of research, and the downside is more likely that any upside.
  • The patient population of CF is limited. There are about 30,000 CF patients in the US, and they have may different types of mutations.  
Because of these factors, the CFF wanted to provide an incentive for drug companies to devote their resources to CF research, and this partnership is a way for them to do so.

Isn't CFF a non-profit? How can it be involved in these big-money financial transactions?

"Non-profit" is a tax designation meaning that the company re-invests all revenue back into its mission. It does not mean that it does not get involved in finances or even that it has an altruistic mission. When I started working at MasterCard in 2000, it was a non-profit. So is another one of my former employers, BJC Healthcare, the largest St. Louis-based employer.

So, there isn't any inconsistency with the CFF being involved in this type of transaction and its non-profit status.

More to the spirit of the question, I don't believe anyone at CFF will be buying a mansion or a boat as a result of this deal.  The funds will be re-invested in treatments to benefit CF patients and families. I and others will be watching to ensure this is the case.

Ok, but the treatments Vertex is developing cost upward of $300,000 a year. Shouldn't the CFF be using its influence to lower the price and ensure access rather then sharing in the profits from gouging needy CF patients?

The high price reflects some of the dynamics I mention above -- it is not for the manufacture of the actual pills but for the immense about of research that went into developing this treatment, as well as other research avenues that were not so fruitful. I'm not an expert in the economics of drug development, but it does not strike me as unfair that Vertex and other companies would receive some profit for their work in developing life-saving cures.  

I've been blessed and lucky enough in my life to be well compensated for work that is much less obviously beneficial. Part of this compensation has been access to health plans that have covered a very large portion of the costs of Meagan's treatments and medications. I hope that these upcoming treatments will not be an exception.

It is my understanding from the announcement that the CFF will be using some of these funds to ensure that CF families less fortunate than ours have access to a variety of CF treatments.

Does this mean we are at "Mission Accomplished?" Can we stop now?

If only.

Kalydeco by itself only treats a relatively rare form of CF. The new combination looks promising, but is far from a slam dunk. 

And this will still leave many other untreatedmutations, and this treatment will require a daily medication, with the aforementioned price tag.

CFF's goal is a one-time treatment that will address all the symptoms of CF. We are, unfortunately, still very far from that goal.

OK, if the CFF just brought in $3.3 billion, why should I donate to them instead of some other disease? Or my local food bank? Or my church? Or my favorite political cause? Or my neighbor who just lost his job? Or the needs of my family?

How we choose to spend the limited money we have available for charitable donations like this is an obviously very personal decision.

Particularly at this time of year, the number of worthy causes asking for our donations can be overwhelming. I know that I personally pass on more opportunities to donate than I accept.

My aim here is to lay out why I believe that there is still work and progress to be made in finding a cure for Cystic Fibrosis, and why I continue to trust the Cystic Fibrosis Foundation to do it.

If you have reached a different conclusion, or you feel called to direct your generosity in a different direction, I certainly understand that.

Regardless, I am thankful for the many ways people have supported Meagan and our family through CF, whether it be financial contributions to CFF, showing up at events, practical assistance and forbearance for our practical needs, or kind words and prayers for Meagan and all of us.



Thursday, November 06, 2014

It's Not Really About Ethics in Sports Journalism

Robert Lipsyte, ESPN's departing ombudsman takes some "parting shots" (to borrow a term from ESPN's venerable Sports Reporters about ESPN's place in sports journalism.

Lipsyte begins by discussing the coverage (or lack thereof) of the various controversies surrounding Jameis Winston and the Florida State program during College GameDay's recent visit there:

“GameDay” was recently in Tallahassee, Florida,, with the best college quarterback in the country, Florida State’s Jameis Winston, having been accused at various times of sexual assault, robbery, autograph peddling and inappropriate campus conduct. Fowler and Herbstreit smoothly affirmed our right to enjoy the show without the angst of moral judgment on college sports. 
Hey, it’s “GameDay.” Leave the heavy breathing to “Outside the Lines” (if you can find it). 
I suspect most viewers were fine with this.  This is a show whose signature feature is one of the panelists donning an oversize hat or mask for the team he predicts to win that day's game.  It's where Katy Perry says she wants a quarterback to call her.  Not many are tuning in for a grim report on the NCAA, player contact, and ethics,

Lipsyte then oddly pivots from there to a defense of ESPN's suspension of Bill Simmons for calling Roger Goodell a "liar" on his podcast.

To put my cards on the table:


  • I have been a fan of Simmons since his pre-ESPN days.  That doesn't mean I agree with everything he writes, or all of his digressions, but I admire how he has blazed his own path to his current place in the sports commentariat.
  • I found (and continue to find) his focus on the evils of Roger Goodell annoying.  I don't particularly care of the NFL commissioner is a liar, or when he ad the tape, and that in some ways he has become a scapegoat (which is not to say he's innocent, but we seem to think that trashing him is sufficient to demonstrate that one is confronting domestic violence). This doesn't mean I think he should have been suspended for it, just that I would have preferred he write and talk about something else.
  • In short, I think Simmons is probably right that Goodell is lying, but I don't really care.
The utterance occurred during the weekly "guess the lines" podcast with "Cousin" Sal Iacono.  Regular features of this podcast include:

  • Simmons and Sal each guess what the betting line is for each upcoming NFL game. And the one who wins the most weeks wins the year long contest for a consequence that has never been paid off.
  • Sal imitates Simmons in a voice mail where Simmons is typically gushing over whomever his current favorite NFL QB is.
  • They criticize the scheduling and announce paring assignments for the games in the voices of Mike Francesca and Chris (Mad Dog) Russo.
  • Simmons does an imitation of Andrew Luck describing the Colts' most recent performance.
  • Sal promoting that week's Jimmy Kimmel guests.
Expressing surprise that something stated here doesn't meet journalistic standards is in line with being shocked to find gambling is Cassablanca.  Yet Lipsyte seems surprised.

Simmons's second most frequent podcast guest is his college buddy John "Jack-O" O'Connell. Almost every one of their podcasts include baseless speculation about almost every prominent New York and Boston athlete (Simmons started as the "Boston Sports Guy;" Jack-O is a Yankees fan) being a PED user.*

Now, calling someone a liar is not very nice, but does not bring about any real-world consequences. Using PEDs is against the rules of all sports, and many athletes are on the outside of the Hall of Fame because of either confirmed PED use, rumors of PED use, or happening to have their career coincide with suspected widespread PED use.  This is serious stuff.

Yet, ESPN never intervened.  Only when Simmons made unsupported statements about the commissioner one of their business partners (and yes, dared ESPN management to discipline him for it) did they discover their journalistic principles.

This quote from Sandy Padwe that Lipsyte included is revealing in a way that Lipsyte probably did not intend:

“Journalism is important to ESPN when it needs it,” he said, “meaning when critics look at the whole product and wonder why it seems 99 percent of the daily report is devoted to noise and the current name of the moment. Then the network points to 'Outside the Lines' or some of the recent reporting on Roger Goodell. 

In this case, ESPN needed a pretext to keep one of its employees in line, and all of a sudden we're supposed to believe property that features Coors Light Cold Hard Facts (that are really opinions), "C'mon Man!", Frank Caliendo's impressions, Chris Berman's whole schtick, and the rest of Simmons's podcasts is some kind of Serious Journalistic Enterprise.

I don't think ESPN can have it both ways (as I suspect will soon become explicitly apparent).

--

What I think is really going on, and is also in part what the Goodell controversy is about, is whether we need the middlemen between talented people and their audience.

Lipsyte also wrote:

This is immediately tricky because Simmons sometimes acts like a journalist, or at least seems to want to be taken seriously. If he were starring on BillSimmons.com or his own version of Jon Stewart’s “Daily Show,” that split personality might work. But the site is owned by ESPN, and house rules always apply. If you call a subject a liar on ESPN, you better have definitive proof. 
...
The audience loves Simmons just the way he seems to be -- unfettered and willing to speak his version of truth to power. But Simmons is speaking from a somewhat protected place. It’s a little like being at home and shouting out the window. 
As a rising son in ESPN’s booming growth this past decade, Simmons was allowed to find the reach of his talents by testing the boundaries of his gilded cage.  
This elides the fact that Simmons built his audience and craft on his own (and likely could do so again).

Now, I think the ESPN-Simmons partnership has been and continues to be beneficial to Simmons. It's unlikely he would be producing documentaries, sitting in the studio for NBA broadcasts, promoting his favorite directors and writers, or (ahem) hosting podcasts without the support of the ESPN empire.

Likewise, it's obvious the NFL owners (of which Goodell is a figurehead and proxy) provides substantial infrastructure for the athletes to showcase their talents.  But how necessary are they, really?  And is it possible that in some cases (Donald Sterling being an obvious example) they do more harm than good?

Are we moving toward a world where talented people like Simmons and LeBron James can showcase their talents free from these "middle-aged racist white guys in suits?"

What I think we saw is ESPN's last grasp at saying, "No."  We;ll see if they're right.