Much Ado About UNOS

by Sean Philpott, Director of the Center for Bioethics and Clinical Leadership

Next weekend my husband and I plan to attend a fundraiser to raise money to cover some medical expenses for the friend of a friend. The person in question, a middle-aged woman not much older than myself, suffers from severe cardiomyopathy. Her heart is literally falling apart and she needs a transplant.

Even if a suitable heart is found, the costs of the transplant are astronomical. The procedure itself costs over $600,000. That price doesn’t include any post-operative care, which can run patients another $200,000. Nor does that figure include the cost of immunosuppressive drugs, which heart transplant recipients need to take for the rest of their lives. Those drugs and follow-up monitoring run nearly $30,000 annually.

Now, my friend’s friend is somewhat lucky in this regard. Her health insurance will actually cover most of these costs, at least until she hits her lifetime coverage cap. So then, why is there a need to have a fundraising event?

The reason is that the family needs to move to California in order to improve the patient’s chance of getting a suitable donor organ. Organ transplantation in the United States is overseen by an organization called the United Network for Organ Sharing (or UNOS), a private non-profit organization that operates under contract with the federal government. One of the things that UNOS does is manage the national transplant waiting list, matching patients in need of an organ with suitable donors (both living and dead).

Organs for transplant are exceedingly rare commodities. For example, nearly 4,000 people are currently on the waiting list for a new heart; that is almost double the number of organs that become available annually. UNOS thus allocates these organs according to a complex algorithm that includes age, blood type, medical urgency, waiting time, geographic distance between donor and recipient, size of the donor organ in relation to the recipient, and type of organ needed. In the case of new hearts, the two key factors are medical urgency and geographical distance.

To deal with geography, UNOS divides the country into 11 different zones, and organs tend to be allocated within a particular zone. When a heart becomes available in zone 9 (which includes New York and Western Vermont), it tends to go to a patient in zone 9. But not all zones are equal. In this zone, where there are nearly 350 waiting patients, only 175 hearts became available last year. By contrast, in zone 5 (which includes California and other Southwestern states) there are 380 eligible candidates and 357 hearts become available in 2012.

So geography matters, and so my friend’s friend is heading to Los Angeles in order to get on the transplant list there. Unfortunately, health insurance doesn’t cover those relocation costs, and the family is desperately trying to raise money to finance the move.

That they need to do so highlights one of the problems with the current system: those with money stand a better chance of getting an organ than those who do not. The organ allocation system managed by UNOS was ostensibly designed to combat this, avoiding a return to the dark days when groups like the Seattle God Squad decided which patients lived and which died on the basis of social worth.

The system works in the sense that medical need and patient suitability are the key factors that determine who gets an organ, not social worth. But money, which is itself often a measure of social worth, can be used to game the system. People with money can move to different geographical zones in order to increase the likelihood that they will receive an organ, they can hire top specialists who know how to make medical need look more urgent, and they can even sue in federal court in order to challenge existing allocation rules.

Sadly, there is little that we can do to fix this. Given the fundamental structural problems with access and delivery of health care in the US, the system is just about as good as it can get. Until every American has comprehensive health insurance, and until that insurance also covers associated costs of care and treatment (like moving expenses for transplant candidates), the wealthy will have a greater chance to get scarce resources like organs. For now, the rest of us will simply have to rely on luck and bake sales.

[This blog entry was originally presented as an oral commentary on Northeast Public Radio on August 29, 2013. It is also available on the WAMC website. Its contents are solely the responsibility of the author alone and do not represent the views of the Bioethics Program or Union Graduate College.]

Righteous Indignation

by Theresa Spranger, Bioethics Program Alumna (MSBioethics 2012)

Lately, I have heard several news stories that have shocked and saddened me.  I want to believe in basic human decency,in charity, and love of neighbor, but sometimes feel like evidence is contrary to my preferred view.

I know terrible aspects of society exist, but usually choose not to focus on them.  I feel they are anomalies and that people are generally good and decent.  Though, there are some stories lately that have threatened my world view.  I focus on these stores in this post because I think it is important that we as a civil society become outraged by these events.

Story 1: Texas – A 13 year old foster child runs away from her foster home.  She accepts a ride from three men, is taken to an apartment and repeatedly raped by up to 10 different men through the night.  Full story: http://www.theblaze.com/stories/2013/07/24/immigration-detainers-placed-on-two-mexican-men-charged-in-horrific-gang-rape-of-13-year-old-texas-girl/

Story 2: Oklahoma – A 23 year old college baseball player from Australia was shot in the back while walking down the street.  He was killed by 3 teenage boys who claimed to be “bored” and therefore decided to “kill somebody.” Full story: http://www.huffingtonpost.com/2013/08/19/christopher-lane-australian-baseball-player-dies_n_3782318.html

Story 3: Ontario, Canada – The family of a severely autistic child found an anonymous letter at their home.  The letter was full of hateful language putting down their child, calling him useless, unlovable, and suggesting the mother euthanize her son and allow scientists to harvest his organs.  Please read the full text of the letter, it is shocking.  Full story: http://www.theblaze.com/stories/2013/08/19/read-the-unbelievably-hateful-letter-sent-to-family-with-autistic-child-do-the-right-thing-and-move-or-euthanize-him/

Why did I choose these stories?  What links them to each other?  They all show a lack of respect for the human person.  The men in the first story lack respect for women and children.  The boys in the second, lack respect for human life and do not recognize moral consequences.  The woman in the 3rd story does not feel that a handicapped child or his family deserve to be treated with dignity or respect.

These events should outrage us, as decent citizens we should unite against this type of senseless violence.  I think they do outrage us, but are we giving them enough focus in the media? Are these events spurring us to discussions of causality or pointing us to a bigger flaw in the fabric of society?

It is said that you can tell the character of a man by how he treats those weaker than him.  We are a nation who sides with the underdog, we love the kid who stands up to the bully to protect the nerd, the hero who jumps on the subway track to save someone, the children who find victory and their place at the Special Olympics.

What type of character do the people in these news stories have?  Do the men who raped that poor girl have any decency?  Do the boys who killed that college student have a conscience?  Does the woman who wrote that letter have compassion?  These people are self-absorbed, concerned entirely with their own desires and comfort.  Their actions are cruel and evil.  In the first two cases the persons should be prosecuted to the fullest extent of the law.  In the third she should be held accountable for her rude behavior and publicly shamed by her neighbors.

Allowing these news stories to come and go is not enough.  We need to be outraged.  We need to denounce these types of senseless acts of violence as wrong.  Our world is full of gray areas, but is there still right and wrong?  And do we still know what that is?

Detroit is no exception to these types of unfortunate events.  We recently had two homeless men killed in a hit and run, they were not hit once, but by two different cars, neither driver stopped to care for these men.  I am ashamed to live in a city where that would happen.

There is decency left in our society though, and this gives me hope.  One of those men used to sit in his wheel chair by the freeway entrance, since his death someone placed his wheel chair on that corner and people have placed flowers and trinkets in his honor and written messages on the chair.  The other man was a regular at Detroit Tiger’s games, a bit of a local celebrity for fans.  Shirts were made up with this man’s signature phrase (“Eat ’em up Tigers”) and sold to cover funeral costs for the two men.  We are a good and decent people, but we need to remember this and express it more often.

Let us be: good, compassionate, loving, hopeful, helpful, and kind.  Let us build a world of respect and love for one another.  We are all different, but that is what makes life interesting and exciting.  How dull the world would be if we were all the same.

Different, but equal, no one of us is more important than another.  We have become a self-absorbed, self-obsessed culture, constantly on social media glorifying our own lives.  So many of us have lost our connection with other members of society, we have lost our sense of community, our respect for people, and the reality of responsibility and consequence.

For me, I want to see all persons, of all walks of life, races, sexes, intelligence levels, physical ability, religions, etc. treated with the respect and decency they deserve.  I will not stop being outraged by the news stories I shared and I will not stop working for a world where these stories cease to exist.

[This blog entry was originally posted in a slightly edited form on Ms. Spranger’s blog on August 23, 2013. Its contents are solely the responsibility of the author alone and do not represent the views of the Bioethics Program or Union Graduate College.]

Land of the Free and Home of the Germs

by Sean Philpott, Director of the Center for Bioethics and Clinical Leadership

If you’ve read the paper or watched the nightly news sometime in the past couple of weeks, you’ve probably noted what appears to be a disturbing trend. Specifically, there has been a rash (pun intended) of infectious disease outbreaks locally, nationally, and internationally.

Just a couple of months ago, for example, a Saratoga county resident became infected with Powassan virus after being bitten by a tick. This year alone, fifteen other cases of Powassan virus have been reported in New York State. Up to 5% of deer ticks in the state now appear to carry the virus, which kills up to a third of people who contract it.

More recently, the parasite Cyclospora has sickened more than 500 people in 16 different states, including New York. In two of those states, Iowa and Nebraska, the source of the outbreak has been traced to a pre-washed salad mix packaged in Mexico and sold to two large restaurant chains. It is still unknown, however, how this parasite was spread to the residents of the other 14 states affected.

Finally, and most disturbing, is the discovery of a new strain of avian (or bird) flu in China. Unlike other strains of avian flu that have prompted panic in the past couple of years, this strain — known as H7N9 — may have the potential to be transmitted from person to person. In a case published in the August 6 issue of the medical journal BMJ, doctors report that a 60-year-old farmer transmitted the virus to his 32-year-old daughter as she took care of him. If true, this could have deadly consequences. Of the nearly 200 cases reported to date, over 50 people have died (including the farmer and his daughter).

Previous outbreaks of bird flu have largely been contained because the virus couldn’t be passed from one infected individual to another. Those who contracted bird flu were usually those who were exposed to live poultry, such as farmers or butchers. By shutting down poultry markets and slaughtering infected flocks, public health officials were largely able to prevent the spread of the virus. If it turns out that H7N9 can be passed from person to person, it will be that much harder to stop its spread.

Given this, is it any wonder that America has become a land of germaphobes (or rather a land mysophobes, as that is actual term for someone who is afraid of germs)? While most of us haven’t become Howard Hughes-like recluses who shuffle around the house with Kleenex boxes on our feet, we have gone a little overboard with our approach to personal hygiene. Many of us carry around small bottles of antibacterial gel or disinfecting wipes, we avoid shaking hands, and we quickly back away anytime someone near us sneezes. Some of us will also stop buying pre-packaged salads, at least for a while.

Truth be told, however, we are probably wasting our time and our money. Use of an antibacterial gel like Purell is no more effective in preventing the spread of germs than washing our hands with soap and hot water. At this point, avoiding pre-packaged salads is akin to closing the barn door once the horse has gotten out, as the next outbreak of food-borne illness will likely be traced to some other source. In fact, most cases of food-borne illness are due to our own sloppy habits in the kitchen – not washing fresh produce or fruits before we eat them, or letting raw meat or chicken cross-contaminate food that is ready-to-eat.

We are also rather short sighted and reactionary. We demand that public health officials do something to protect us when an outbreak of Powassan, Cyclospora or influenza occurs, but fail to adequately fund the programs necessary to prevent these epidemics from occurring in the first place. It’s been nearly fifteen years since Laurie Garrett first published her book Betrayal of Trust, which described the systematic dismantling of our country’s public health infrastructure, and the dire consequences should that continue. And yet public health programs are still the first to be cut whenever our local, state and federal government faces a budgetary crisis.

I think is great that Senator Schumer is calling for increased funding to study Powassan and other tick-borne diseases. I think it is wonderful that food safety advocates are calling for increased FDA and USDA inspections of meat and produce, both domestically produced and imported from overseas. But it’s a case of too little too late.

We can’t continue the cycle of funding such programs every time there is an outbreak, then slashing support when they are successful in preventing new epidemics. If anything, we should devote more and more resources to public health as the frequency of illnesses and outbreaks declines – that means that those programs are working. We need to start rewarding those public health victories rather than responding to public health failures.

[This blog entry was originally presented as an oral commentary on Northeast Public Radio on August 15, 2013. It is also available on the WAMC website. Its contents are solely the responsibility of the author alone and do not represent the views of the Bioethics Program or Union Graduate College.]

Dear Jhonny

by Theresa Spranger, Bioethics Program Alumna (MSBioethics 2012)

So, it’s been an interesting week in Major League Baseball; an historic take down of steroid abusers and one of my Tigers is among them.  It’s a 50 game suspension for Tiger’s shortstop, Jhonny Peralta, and over 200 games for New York Yankee, Alex Rodriguez (A-Rod).

In total, 13 players were suspended for purchasing performance-enhancing drugs (PEDs) through a Miami clinic.  This was the largest PED suspension in the history of baseball and many are praising Major League Baseball (MLB) management for their vigilance in cleaning up the sport.  I am not among those heaping praises.  Personally, I think the whole thing is for show and these players drew the short straw.

As fans we insist that our favorite sports get faster, better, and more exciting every year.  We want athletes of super human ability, but certainly don’t want them to take PEDs to get these abilities.  Dear sports fans…we can’t have it both ways.

Therefore, we must choose: do we want a pure, clean, wholesome sport with potentially fewer home runs, and less excitement, or do we accept the use of PEDs?

Until we answer this question honestly the game will never be “clean.”  Personally, I wouldn’t mind a PED free baseball game.  I tend to like sports in their non-enhanced form.  For instance, I find college basketball far more energetic and entertaining than the NBA games.  Is this true for the majority of fans however?

We say we don’t want PEDs in sports because they are unhealthy for the players.  The following is a list of side effects copied from the MayoClinic website:

Men may develop:

• Prominent breasts
• Baldness
• Shrunken testicles
• Infertility
• Impotence

Women may develop:

• A deeper voice
• An enlarged clitoris
• Increased body hair
• Baldness
• Infrequent or absent periods

Both men and women might experience:

• Severe acne
• Increased risk of tendinitis and tendon rupture
• Liver abnormalities and tumors
• Increased low-density lipoprotein (LDL) cholesterol (the “bad” cholesterol)
• Decreased high-density lipoprotein (HDL) cholesterol (the “good” cholesterol)
• High blood pressure (hypertension)
• Heart and circulatory problems
• Prostate gland enlargement
• Aggressive behaviors, rage or violence
• Psychiatric disorders, such as depression
• Drug dependence
• Infections or diseases such as HIV or hepatitis if you’re injecting the drugs

Having read the effects, what are your thoughts?  Do we downgrade the game to protect the health of our boys?  Do we openly accept and endorse the use of steroids, sacrificing the health of our players and potentially teaching bad lessons to young impressionable fans?  Or do we maintain this “don’t ask, don’t tell” approach to steroid use, every so often catching a player or two for a sacrifice?

I am a woman of clear opinions, lines, and values.  I do not like half-hearted solutions and problems being swept under the rug.  If we do not care about steroid use we should stop looking for it.  If we do care, we should crack down hard and rid the game of PEDs for good.  This short term suspension for players involved with a single supplier being lauded as the great clean-up of baseball is garbage.  MLB, do it right or not at all.

[This blog entry was originally posted in a slightly edited form on Ms. Spranger’s blog on August 9, 2013. Its contents are solely the responsibility of the author alone and do not represent the views of the Bioethics Program or Union Graduate College.]