A man fights his disease and the system that might kill him (5×8 – 3/2/12)

Tales from the transplant list, Chick-fil-A and the questions that won’t go away, giving up on democracy, the 2-percent in the snow emergency, and what were you doing at 18.


1) TALES FROM THE TRANSPLANT LIST

beeson_transplant.jpgThe health care debate in the U.S. can be an academic process until you start talking about real people. Joel Beeson, of West Virginia, is on a liver transplant list due to complications from a genetic bleeding disorder.

According to his Tumblr page, Beeson had arranged for a “living donor liver transplantation” from his brother in which a piece of the “good” liver has the ability to regrow. The part that’s given to the recipient also regenerates.

By his account, Beeson was good to go. Then the rules changed. The Cleveland Clinic changed its age limit from 60 to 55 for donors. Beeson’s brother is 58.

Last evening, I exchanged e-mails with Beeson’s wife, Dana Coester, who told me her story:


The issue about the rules changing has been a little fuzzy for us, and Joel can fill in some blanks here too – but individual centers set their own guidelines, and most centers have a cut off of 55. Cleveland Clinic, which is where Joel is listed, was one of the few who previously had the cut off of 60 (and if you look at the Cleveland Clinic info about living donor transplants you’ll see that their brochure still says age 60 is the limit). But very recently, I believe within the last 6 months, the Cleveland Clinic changed their guidelines, because there were a couple of donor deaths at other centers and some other data that pointed to better outcomes at donors being 55 and younger. We attempted an appeal through the Cleveland Clinic, because the doctor has final say, and our donor, his brother, at age 58 is a triathlete and exceptional health. However the appeal was turned down.

The whole transplant process is capricious, for many complex reasons that have to do with the medical system, the insurance system, and all kinds of pitfalls. Our journey has been fraught with the kinds of problems that every American with a chronic health problem faces. Due to Joel’s bleeding disorder and reliance on expensive blood product, 3 years ago Joel hit the million dollar cap on his healthcare benefits and lost his insurance coverage. We were more than half a million in debt to the hospital after the coverage was lost and had to appeal to then Governor Manchin to extend his coverage until we could select an HMO during open enrollment to avoid the penalties for pre-existing conditions. But the HMO was a problem, because they didn’t have prescription coverage, and centers won’t transplant you, even if you have coverage for the transplant part, if you don’t have coverage for the anti-rejection drugs. It was like a horrible catch-22, and we were scrambling to find some kind of supplementary insurance that would cover the medication needed. Then the HMO, after one year left the state, and the only insurance option available was the original plan that wouldn’t accept him because he’d already hit the million dollar cap! Then the governor extended the million dollar cap to be 1.5 million, and we were allowed back in temporarily, but we knew that half million wasn’t enough for blood factor and a transplant, so we knew if we didn’t have the transplant soon, he would use all the insurance on factor. It felt like a death sentence. Over and over again. Then, we waited anxiously for the Obama administration to pass the health care bill eliminating lifetime caps, and then finally, after that went through, mercifully we qualified for coverage again just in time before we lost coverage again at the 1.5 million cap. It has been 4 years of fear and tenacity and blind crazy hope. The age 60 cutoff change is just one in a series of blows that seem to be around every corner. Navigating high stakes health care is a full time job. And even though we have insurance now, thanks to the health care law, we continue to fear a repeal of the health care law, because we are running out of time for last minute saves. But I know our story is just like hundreds of other families out there struggling with the same issues and fears and obstacles.

Joel has Type III Severe Von Willebrand’s disease, a congenital blood-clotting disorder that results in blood platelet not working and uncontrolled bleeding episodes for which he must give himself IV infusions of blood clotting factor. Because of the virus he contacted through blood transfusions, he developed cirrhosis, which in turn causes his spleen to destroy more blood platelets and other blood cells, which further complicates the inherent bleeding disorder. Cleveland Clinic, one of the best in the world in terms of liver transplantation, has never transplanted a Type III severe von wllebrands patient. The biggest issue is that Joel’s bleeding episodes are getfails – more difficult to stop, more frequent, more severe (with the use of factor being more expensive than a transplant). We don’t know when the bleeding issues will become more of a threat than the liver disease itself, but the cadaverous transplant list is based upon standardized scores (MELD, or Model End-Stage Liver Disease) and only takes into account a set of blood chemistry levels that don’t take into account the bleeding disorder. That is one of the main reasons we’ve decided on a living donor transplant, which happens at a lower MELD. He will be ineligible for a living donor transplant because they do a living donor with a MELD of 15-18. (Cadaver donor is typically 22 MELD and up). With Joel’s bleeding disorder complications, compounded by the problems of type O organ availability because it is the universal donor and type O patients must wait the longest to get a liver, it is unlikely he will survive long enough to get a cadaver liver.

You can follow Mr. Beeson’s fight against his illness and the system on this Facebook page.

By the way, the University of Minnesota also has the 55-year-old age rule.

(h/t: Curtis Gilbert)

2)CHICK-FIL-A AND THE QUESTIONS THAT WON’T GO AWAY

Do a business’ real or imagined positions on social issues influence your purchasing decisions? A week ago, there was plenty of applause when the Metropolitan Airports Commission announced Chick-fil-A will open a store at the Minneapolis St. Paul International Airport.

Why might that be controversial?

In Boston, Northeastern University’s Student Senate voted voted 31-5 this week to denounce a move by the chain to open a store in the student center. It says the company provides financial support to groups opposed to gay rights.

EqualityMatters.org, a site promoting gay rights, says The WinShape Foundation, a charitable group founded by Chick-fil-A founder S. Truett Cathy contributed in excess of $1.7 million to anti-gay causes in 2009.

An official with Chick-fil-A told the Boston Globe that’s not true:

We would encourage you and your contacts to explore the websites for both Chick-fil-A and the WinShape Foundation to determine the purpose of our foundation and funding versus relying on reports or articles. Again, we have no political agenda, policy or position against anyone, especially the LGBT community.

As a private, family-owned company, Chick-fil-A has worked faithfully to be a good steward of the resources that our guests have entrusted us with. In a world with business leaders that do not always practice generosity and a genuine concern for their fellow man, the Cathy families have a long history and desire to give to others through their personal resources!

In a 2007 article, however, Forbes cited the company’s involvement in monitoring the religious and home life of its franchisees:


The parent company asks people who apply for an operator license to disclose marital status, number of dependents and involvement in “community, civic, social, church and/or professional organizations.”

But Danielle Alderson, 30, a Baltimore operator, says some fellow franchisees find that Chick-fil-A butts into its workers’ personal lives a bit much. She says she can’t hire a good manager who, say, moonlights at a strip club because it would irk the company. “We are watched very closely by Chick-fil-A,” she says. “It’s very weird.”

…Those who do say they like the member-of-the-club feel that goes along with working with Chick-fil-A. “It is very difficult to get in, but once you’re in, you’re in for life,” says Donald Elam, a Chick-fil-A franchisee in Superstition Springs, Ariz.: “I tell all my people, ‘I’m not working for Chick-fil-A; I’m working for the Lord.'”

Might that be a problem for customers in Minnesota, where a constitutional amendment banning same-sex marriage is on November’s ballot? Even the hint of involvement in conservative social issues has earned companies here a customer backlash, as Target Corp., might attest.

3) GIVING UP ON DEMOCRACY

When Tim Penny gave up his Minnesota congressional seat years ago, he appeared on the McNeil-Lehrer Report on PBS to say it was impossible to get anything done in Washington with the polarized atmosphere. An incredulous host responded that if the few in power are giving up, what hope is there of the situation changing?

None, as it turned out, based on Maine Sen. Olympia Snowe’s decision this week to head back to the rocky coast. She writes in today’s Washington Post on her decision to give up. It may be one of the most important political “speeches” in recent history:


One difficulty in making the Senate work the way it was intended is that America’s electorate is increasingly divided into red and blue states, with lawmakers representing just one color or the other. Before the 1994 election, 34 senators came from states that voted for a presidential nominee of the opposing party. That number has dropped to just 25 senators in 2012. The result is that there is no practical incentive for 75 percent of the senators to work across party lines.

The great challenge is to create a system that gives our elected officials reasons to look past their differences and find common ground if their initial party positions fail to garner sufficient support. In a politically diverse nation, only by finding that common ground can we achieve results for the common good. That is not happening today and, frankly, I do not see it happening in the near future.

Whoa! Like Penney before her, Snowe’s voice is the sound of someone giving up on democracy.

“There’s a rank-and-file rebellion brewing here,” said Sen. Lindsey Graham, R-S.C., tells the Associated Press. “Most people who come to the Senate work hard to get here and have done things in their lives of accomplishment. And I think a lot of us are getting tired of sitting around looking at each other.”

Is it hopeless? Yesterday’s reaction to the death of Andrew Breitbart suggests it is. It’s a rare time when people dance on graves but Breitbart’s methods and politics prompted many people online to cast off their decency. Writing in his Rolling Stone column (Death of a Douche), Matt Taibbi proved that there’s nothing wrong with the U.S. Senate, that isn’t also wrong with the rest of the nation:


“So Andrew Breitbart is dead. Here’s what I have to say to that, and I’m sure Breitbart himself would have respected this reaction: Good! F*** him. I couldn’t be happier that he’s dead.”

I’ll be talking about this — I hope — on today’s Friday Roundtable on the Daily Circuit. Other panelists include Dessa and Britt Robson.

Discussion point: When is it time to fight for change and when is it time to give up and go home?

4) THE 2 PERCENT

Surprised that so little snow resulted in a Saint Paul snow emergency, I was set straight this week by a wise colleague who explained that snow emergencies aren’t a solution to a snow problem, they’re a solution to parking problem on the city’s narrow streets. They’re also a good chance for neighbors to meet each other… at the impound lot.

The Pioneer Press today has the usual blowback from a snow emergency in the city: The insistence that the system stinks:


“I actually heard the tow truck pulling up,” Jeffrey said. “I ran out there in my socks.”

He was just in time to get a total of $106 in tickets but waved off the tow truck waiting behind the traffic police. Later, he found out his friends across the street didn’t get their texts, either, and there was the same complaint on the city’s Facebook page.

St. Paul Public Works spokesman Dave Hunt was sympathetic but explained to the Watchdog that the resident’s own phone is usually to blame in these instances.

Fox 9 News provides similar stories:


I heard the plows go by. I went around the corner to move my car, and half an hour later it was gone,” said Paul Molina.

For many frustrated residents the snow is likely to be gone before their resentment resides.

“Our streets our never plowed properly. And then when two inches of snow fall and it’s melting they call a snow emergency. It’s ridiculous,” said Gail Thompson.

The city says its efforts to better inform people of the rules haven’t changed the 98% compliance rate.

No matter now, though, winter is over.

5) JUST ONE QUESTION…

What were you doing at age 18?

Bonus I: So this is the way it’s going to be, is it? I beg for people to read NewsCut and consider the deep-thinking issues of the day. Result? Meh. Then I toss in a reference to Star Wars and people flock to the blog. That’s the way it’s going to be? OK.

Bonus II:Time to shoot some peeps

Bonus III: Jeffrey Dahmer tours outrage Milwaukee.

TODAY’S QUESTION

A new poll says two-thirds of Americans complain that rising gas prices have caused them financial hardship. But as Bob Collins points out on the NewsCut blog, other price increases may be taking a bigger bite out of our wallets. Today’s Question: What item in your family’s budget is causing you the most distress?

WHAT WE’RE DOING

Daily Circuit (9-12 p.m.) – First hour: This week the panelists discuss hip-hop and ethics, political polarization, and the return of the culture wars. Guests: Dessa, hip-hop performer and poet; Bob Collins, who writes the Newscut blog for MPR News; Brit Robson writes about sports, music and politics for Sports Illustrated, the Star Tribune, and Politics in Minnesota.

Second hour: The high cost of college is becoming one of the pressing issues of our time. Personal finance educator and consultant Ruth Hayden joins the Daily Circuit to discuss how families can figure out what they can afford, and how to get the best education without accumulating loads of debt.

Third hour: Lynne Rosetto Kasper, host of The Splendid Table

MPR News Presents (12-1 pm): Amy Chua, Yale law professor and author of “Battle Hymn of the Tiger Mother.” She spoke recently at the Univ. of Minnesota China Center.

Talk of the Nation (1-3 p.m.) – First hour: Why some drugmakers are shifting from blockbuster drugs to tailored treatments. Also: A conversation with “climategate” scientist Michael Mann. And “Galileo” lives, in a new off- Broadway production.

Second hour: A conversation with Neil deGrasse Tyson about why exploring the planets is more important than ever. It’s the subject of his new book, “Space Chronicles.”

All Things Considered (3-6:30 p.m.) – New York City hosts some 55 million visitors a year. Tourism is big business and naturally, so are hotels. Maybe that’s why New York hotel workers managed a 29-percent raise over seven years in their newest contract. NPR will report on New York’s hospitality industry.

  • That’s the way I look whenever I watch that scene in Star Wars… it’s intense!

  • MikeB

    Are you truly a moderate if you always vote the party line? It is extremely frustrating to hear so called moderates complain about their lack of influence when just 3-4 members, if they stay firm, can exert enormous power and shape final legislation. But they don’t because they don’t want to face the temper tantrums from their own side.

    The GOP is able to impose party discipline in an impressive manner. They do so because they believe it is in their political interest, they haven’t even tried to hide it. Sen. Snowe enables this blockage and inaction by how she votes. Senator, heal thyself.

    The Senate is a major problem in our system. POTUS can commit troops anywhere on extended missions and the Senate sits idly by. Meanwhile, the assistant to the assistant associate of a minor cabinet post is held up for months or years because of Senators’ piques and pettiness.

    Argh. To the extreme

  • Bob Collins

    I’m not sure that’s entirely fair. I think Politico had a good article on the 9 votes that Snowe made that angered her leaders:

    1. In October 2009, Snowe was the sole Republican in the Senate to vote for the Finance Committee’s health care reform bill. “When history calls, history calls,” she said at the time. Snowe said she wanted the bill sent to the full Senate, but noted she might not support the final version — and she didn’t. Still, many Republicans didn’t forget voted to bring health care reform up for a vote.

    2. Snowe hadn’t always supported the repeal of Don’t Ask, Don’t Tell, but on Dec. 18, 2010, she joined with seven other Republican senators in voting to repeal controversial policy and allowing gays and lesbians to serve openly in the military.

    3. Just three Republicans in the Senate backed President Barack Obama’s $787 billion stimulus package in 2009 — and Snowe was one of them.

    4. In 1999, Snowe joined her Democratic colleagues and four other moderate Republicans to acquit President Bill Clinton on charges he committed perjury and obstruction of justice in order to keep his relationship with Monica Lewinsky quiet.

    5. A pro-choice Republican, Snowe angered the conservative wing of her party with votes against a ban on partial birth abortions. The measure passed, and President George W. Bush signed the legislation — introduced in the Senate by Rick Santorum — into law in 2003.

    6. Snowe voted in favor of the Defense of Marriage Act in 1996, but cast votes in 2004 and 2006 against a constitutional amendment to define marriage as between a man and a woman.

    7. Snowe supported Obama’s nominees for the Supreme Court and voted to confirm both Sonia Sotomayor and Elena Kagan.

    8. Not many Republicans supported the Dodd-Frank Act, but Snowe was one of the three in the Senate to vote in favor of the 2010 legislation implementing regulatory reform and creating the Consumer Financial Protection Bureau.

    9. Snowe cosponsored legislation in 2005 and 2007 to support research on human embryonic stem cells, upsetting many pro-life conservatives, and praised Obama for lifting the ban on federal funding for stem cell research in 2009.

    http://www.politico.com/news/stories/0212/73449.html

  • Kassie

    People complain about the snow emergencies, but Minneapolis didn’t have one and it is really hard to park on my street now. It is all parallel parking and that is really difficult when there is deep wet snow. I have a Subaru and skills, so I do okay, but not everyone is so lucky. It also makes for more narrow roads.

    And I knew there was a St.Paul snow emergency, and it doesn’t affect me in any way, how can St. Paul residents not know? If we get a big snow, watch the news for the next couple days. Most people never get towed.

  • David

    As a St.Paul resident I’m happy they declared a Snow Emergency. I can’t recall the last time the streets were in such good shape after a snowfall.

    Reminds me of this scene in Star Wars…

  • Bob Collins

    //Reminds me of this scene in Star Wars..

    Well played, sir. Well played, indeed.

  • Chic-fil-a at MSP! i’m going to have to find more reasons to fly….

  • // The whole transplant process is capricious….

    Oh, boy, is it ever.

    I took myself off the University’s kidney transplant waiting list (I’ve been back on for several years) after watching an organ go to an addict who had gotten himself clean for a few months. He was back on dialysis in less than a year, rejecting the organ because he was using again.

    Meanwhile, during that same time period (it was the year that the metro flooded pretty badly), a young teenaged female had to endure in-center dialysis (her basement had flooded and she couldn’t dialyze at home. She alternated between sobbing and screaming the entire four-hour dialysis run. I asked her mom if she was on the transplant list. She told me none of the transplant centers would consider her because she had a genetic disorder that would cause her to reject the kidney in five years or so.

    So, we’ll give precious organs to addicts who reject them in less than a year, but not young women who could enjoy five years or so without need for dialysis.

    This has to change. And it actually can, quite easily. All that need be done is flip the opt-in organ donation system to an opt-out system. By default, your viable organs would go to recipients when you die.

  • MikeB

    Bob, I jumped too quickly and used the word “always” regarding Olympia Snowe. I should not have.

    But…….Snowe was in the Senate for 18 years and Politico found 9 votes that demonstrate her supposed independent streak. #s 5 and 9 are big, conscience type votes and she was a sponsor for one of those. Voting for 2 middle of the road women for SCOTUS should not be proof of much other than how the Senate works, until recently that is. Many on the list are indicative of how far right the GOP has tacked, that all issues are being dragged into trumped up culture wars. Including a committee vote to move a bill to the entire Senate. They had to stretch to find something. To me, it comes up short.

  • Kevin

    One question that just has to be asked: is democracy in this country facing a Snowe Emergency?