Take a Breath

The country has been gripped with interest watching the case of Sarah Murnaghan.  Sarah is a 10 year old Cystic Fibrosis patient who was in desperate need of a lung transplant.  The current transplant waiting list rules state that children under the age of 12 can receive lungs from an adult donor only if those lungs are not needed for an adult or adolescent in the same geographical area.

On the surface this may sound malicious and unjust, but let’s dig deeper.  In order for a child, under the age of 12, to receive adult lungs they must be re-sized for the smaller chest cavity of the child.  Current research says that this re-sizing process can make the lungs less stable and the transplant less successful than adolescent or adult transplants.

Being a logical thinker these types of media frenzy stories drive me batty.  An uneducated public is led by a manipulative or possibly, equally uneducated media to “react” on emotion rather than truly think about the issue.  In a moment the country was abuzz about the “unfair” transplant allocation rules and how we need to change them RIGHT NOW!

I am not saying that these rules don’t need to be updated; I am certainly no authority on lung allocation or transplantation.  My knowledge in this area is limited to information that came up in my recent Google search.  We may very well need to change the process, but let’s take our time, use logic, and consult the experts.

Certainly, Sarah’s story is heart wrenching and no one wants to see a little girl’s life end.  Medical policy however, cannot be created based on preventing whichever outcome would make us the most sad.  UNOS, the United Network for Organ Sharing, has difficult, almost impossible decisions to make every day about who receives the organs they have available.  They have to make these decisions logically and free of emotion.  To be truly just, they need to give the organs to patients who will benefit from them the most, this includes considering which transplants will be the most successful.

After the nationwide outcry and a court order, Sarah’s name was given priority on the lung transplant list.  She received her transplant and her body almost immediately rejected the lungs.  Three days later Sarah received a second transplant; it is extremely rare to receive two transplants so close together.  This second surgery was approximately two weeks ago, and according to press releases from her parents Sarah is doing well.

We should certainly all be happy for Sarah and her family and pray for her continued recovery.  I have no issue at all with the Murnaghan’s fight for their daughter.  I understand what it means to have a family member with a terminal illness and the need to exhaust every resource within reach to save them.  Any avenue that brings a family peace or allows them to continue the fight is fine with me.

I am disappointed however with the reactive media and general public.  Organ allocation is a complex process and should be treated as such.  This means any proposed changes should be thoughtful, logical, and well supported with data.  Sarah’s story stirs emotions in us and we want to help her, but what about the other people on the transplant list?

Maybe there is a 15 year old honors student, or a 22 year old with aspirations for medical school, or a 25 year old mother of 2, or 40 year old father of 5.  We need to keep in mind that Sarah’s is the story we know, but not the only sad story on the lung transplant waiting list.  We trust UNOS with the decisions, because they have a commitment to making them logically, based on need and benefit rather than emotion.

A little bit of Heaven or Hell...your choice and mine...

Today Fr. Tom Hagea, a visiting missionary from Haiti, said Mass at my church.  He gave an absolutely incredible homily that I think should be shared.  Father talked about how we should look for and create "a little bit of Heaven" in our lives.

He talked about what is truly important: family, friends, love, even watching a sunset and seeing the glory of God in it.  He spoke about this great country of ours, how we are richly blessed in America, but often toss those blessings aside.  He talked about how our culture encourages self-indulgent behavior and narcissism.  I spoke with him after Mass and he said that America has a worse type of poverty than Haiti, a spiritual poverty that robs of us of the joy of the moment.

Fr. Hagea spoke hard truths in love, an art that I strive to be student of, but so often fail.  We don't always link truth and love, but if you are unwilling to speak truth to someone are you honestly showing love?  If you see a friend with broccoli stuck in her teeth and don't tell her about it because you want to save her embarrassment, have you helped?  Certainly not, you have probably caused further embarrassment in the end.  This is a simplistic example of course, but it is true in more complicated cases.  

We often don't share the hard truths for fear of being judged, ridiculed, or felt to be judging the other person.  “Live and let live,” we say.  I am a Libertarian, so to an extent I agree with this statement, but at the same time it is our duty as Christians to stand for truth, to speak truth, and to defend truth.  Changing or hiding who we are to be politically correct is cowardice.

Imagine if Corrie Ten Boom's family had thought, “I must not offend, I should keep quiet and not speak or live the truth.”  What if Mother Teresa or Pope John Paul II had kept silent?  Our job as Christians is to help lead people to Jesus...to Heaven.  We do this by living and speaking His truth in love.

The second bit, love, is also sometimes forgotten.  It is not enough to speak truth, but it must be spoken always in love.  This means meeting people where they are, showing them the incredible love God has for them, respecting their dignity and person-hood, accepting their talents and failures with the love of God.  We must not only see a world missing the truth but at the same time love that broken world like Jesus does.  Not an easy thing for sure, and hard as I try to combine both, I all too often hear myself speak truths in the form of judgments or keep the words in my head and heart in a failed attempt "to be loving."

To listen to a man who so artfully combines truth and love was a blessing.  Fr. Hagea encouraged young adults to "grow up," to take responsibility for their life and actions.  He encouraged the older generation to not complain and remember that we are only retired when we have taken our last breath.  We are here together to fight for and work toward Heaven TOGETHER, yet, we sit side by side alone.  

He encouraged parents to stop spoiling children with material things, stop trying to be their children's friend, and show them real, true love.  He said that to love your child and love your spouse as an example to your child is the best gift you can give as a parent. Being raised in a house that believed this and by parents who live it every day I agree wholeheartedly with Fr. Hagea and count myself immensely blessed.

He talked about how our daily choices create a little bit of Heaven or a little bit of Hell for ourselves and those around us.  He encouraged us to see the blessings in our life, big and small, recognizing that these graces are bits of Heaven.

He talked about the Catholic Church and her unshakable focus on serving the poor and how as individual Catholics it is important for us to share this focus.  He talked about how during the earthquake in Haiti the Catholic Church sent aid that not only fulfilled the physical needs of the people but maintained and restored their dignity, something not all of the groups attempted or succeeded in doing.  He talked about what a joy it was to be Catholic, not because our church is perfect, but because it is so messy.  We are a church of people for people, imperfect on all sides.

One of the most amazing things was that Fr. Hagea didn't focus on buzzwords like abortion; he pierced right to the heart of the issue: our culture's focus on “self” and the lack of true, unconditional love.  If only more of our preachers were so courageous and so skilled in speaking church truths.

He gave me pride in my church, gave me encouragement to continue working to live and speak the truth in love, and reminded me to see and help restore dignity in every person meet.  It was a little bit of Heaven for me to hear him speak this morning.  

May each and every one of you reading this know that you are fiercely loved by God and remember that despite the struggles of life we are deeply and richly blessed.

Autism Anger

This week I read an article on Bloomberg.com about a possible link between air pollution and autism.  The article itself didn’t peak my interest as much as the comments.  There were over 200 comments and almost all of them were emotionally charged.  This didn’t surprise me exactly, but made me realize again how passionate people are about finding the cause of autism.

Over the years the rise in autism cases has been blamed on vaccinations, fluoride, GMOs in food, and now pollution.  Vaccination is probably the best known theory of autism cause and has been given a lot of press by Jenny McCarthy.  Ms. McCarthy is the mother of an autistic child; she is joined in her fight by many parents of autistic children.  Their passion is understandable; they love their children and want to know what caused the disease, how to prevent it, and how to treat it.

Autism affects about 1% of children in the United States, or about 1 in 88 births.  It is a spectrum disorder, meaning that not all cases are of the same severity.  The number of autism cases has risen over the last several years and continues to rise.  The facts listed here were obtained from The Autism Society.

An interesting chart on the increase of Autism cases over time can be found on the Autism Speaks Official Blog.  The chart begins tracking autism cases in 1975 at 1 in 5,000 children and ends in 2009 at 1 in 110 children.  This rise has been at least partially attributed to better techniques for diagnosing cases of autism, meaning we are catching more cases than ever before.  Also, because of earlier and earlier diagnosis there is the possibility of over-diagnosing, meaning children who do not truly suffer from the disorder would be categorized as autistic.  The increase could also, of course, be caused by a true rise in the number of autism cases over the years.

I understand that parents of autistic children are passionate about finding the true cause and a cure for the disorder.  What I have difficulty understanding is the anger expressed in the Bloomberg article comments, some of them are obnoxious and downright cruel. 

The possible connection to pollution is a correlative relationship and therefore more research needs to be done to confirm a connection.  The suggestion of pollution as a cause of autism is substantiated by the same type of evidence as vaccinations or fluoride: correlative evidence.  In other words, we need to do more research to know the truth in any of these areas.

So, why isn't correlative evidence good enough?  A correlation takes two independent events and finds a potential relationship in real world scenarios.  This cannot be considered true scientific proof because the events have not been isolated in the study.  Does this mean that a correlative study is useless?  Certainly not!  Events that seem to correlate in the real world should point us toward future research.  Potential correlations should cause researchers to design studies to prove or disprove the correlation scientifically.

In my opinion, we should be actively designing scientific trials to answer the questions of autism relationship to vaccinations, pollution, fluoride, and any other potential cause supported by a real world correlation. 

I think that much of the anger coming from the public stems from the idea that vaccinations are to blame for the increase in autism cases.  Remember, that studies supporting this idea are merely correlative at this point and more extensive research would need to be done to prove this hypothesis.

The anger is deepened for some because it is felt that the research funded by the government on vaccination safety has not been enough.  To this I say, "Do it yourself if you think you can do better."  I don't say this at all flippantly or sarcastically, I believe very strongly in privately funded research projects and encourage doctors to design trials and concerned citizens to fundraise and pay for these trials.  If you could present me with a solid study to prove whether or not vaccinations play a role in autism cases I would lighten my wallet for you and I am sure you would find parents willing to allow their children to be in the trial as well.  It's a common theme I see lately in this country of too much complaining and not enough creativity.  Stop crying that "it isn't fair" and put your energy into positive discovery.

When speaking of vaccinations however, one must also remember how vital they are to our society.  Childhood vaccinations have decreased child deaths by an incredible amount and we have all but eliminated some terrible diseases like Polio.  The good they have done cannot be thrown away because of correlative evidence possibly linking them to autism.

Anger in this issue is not one sided however, some strong advocates for vaccination are downright unwilling to admit that those vaccinations could have side effects.  It is suspected that vaccination side effects are under reported and under studied because of this bias and the idea that the benefit vaccination has brought to our society outweighs any and all potential risks..  This mindset only proves to increase the conspiracy theories about autism and vaccination however.  It’s a vicious circle.  In my opinion, strong supporters on both sides need to take a breath, step back, and be rational.

We spend too much time arguing with emotion instead of fact.  We need to start putting our money and energy into finding information rather than shooting down ideas.  We are in an age of INCREDIBLE technology and ability; there is almost no question we cannot answer.  Let's stop name calling and tap into some of that potential.

It’s not you, it’s me…

I am disgusted with the growth of government bureaucracies and the lackadaisical view of so many Americans toward helping our neighbors.  This isn’t a recent development, but has been a slow creep over many, many years. 

The government is not the only body that can help, nor are they particularly good at it.  When American’s put their time, talent, and treasure into a project we change the world.  We need to return to the things that made us the greatest country on earth: our heart, our compassion, our love.  We are shirking our duties as citizens of this great and free nation and need to be more active in showing love to those in need.  If we give a “hand-up” the government won’t need to give a “hand-out.”  I think it’s time we broke up with Uncle Sam, so I wrote him a “Dear John” letter…

Uncle Sam,

             It’s not you who should feed the hungry…it’s me.

       It’s not you who should comfort the widowed and orphaned…it’s me.

     It’s not you who should care for the sick…it’s me.

I have allowed you through the years to steal bits of my humanity and even more of the humanity of my brothers and sisters who needed me.  I let you convince me that I didn’t have the power to change things or help people and that the little mark I could make on the world would be insignificant and unnecessary.  This abusive relationship has gone on long enough and I think it’s time we break up. 

I WILL see the homeless man on the corner for what he is…a man; no longer will he be an insignificant being behind a sign asking for food. 

I WILL note the true self of the single mother at the grocery store; she is a woman who made the hard choice in a society of “quick fixes.”

No longer will I walk by, turning the broken, desperate, lonely, poor, hungry, or weary members of my community into numbers or dollar signs taken from my paycheck each week.  These are not your “problem”; they are human persons that I am to love, help, care for, and lift up.  I can and will…

•           Stock the shelves at the local food bank
•           Give diapers, bottles, clothes, food, etc. to single mothers struggling to find a way to keep and care for their child
•          Show love and compassion to the desperate and lonely, seeing their humanity and recognizing their worth as individuals
•           Seek out the unemployed and find uses for their unique talents and skills

You see Uncle Sam, I don’t need you…we don’t need you!  American’s are resilient, kind, generous, and compassionate, we can do all of these things and more, far, far better than you could ever hope to accomplish through your bureaucracy and red tape.  Love is verb and we will live with LOVE.

Live

Our

Values

Energetically

Look Before You Leap...

Last week an FDA Advisory Committee recommended that restrictions on the diabetes drug, Avandia, be lessened.  The restrictions were originally placed in 2010 because of concerns that the drug caused an increased risk of heart failure.  The increased risk of heart failure was originally suggested by a researcher at the University of Cincinnati, he performed a study compiling data from several old Avandia trials.  His work suggested a 43% increased risk of heart attack in diabetic patients taking Avandia.  GlaxoSmithKline, the developer of Avandia, insisted that they had a study being performed that showed no increased risk of heart failure and had a superior design to the data analysis study.

At the time of the 2010 decision, Avandia was the most popular diabetes drug on the market, its popularity instantly dropped and the pharmaceutical company was accosted with lawsuits.  Settling these lawsuits and dealing with other issues from the FDA's decision cost the company a small fortune.

The re-review we saw at the FDA last week is extremely rare.  The committee was called because of an analysis performed by Duke University.  Duke re-analyzed the data from the original study by GlaxoSmithKline.  This is a study that was specifically designed to show cardiac risk and that the company had stated showed no increased risk of cardiac event in patient's taking the medication.

Duke's analysis matched that of GlaxoSmithKline and because of this the board reversed their initial decision and recommended that restrictions be lessened. They have also asked that additional studies be performed to confirm this result.  It is important to note that the advisory board decision is only a recommendation to the FDA, so no formal lessening of restrictions has been made at this point.

If this reversal is formally made by the FDA it won’t erase the damage done.  Millions of Americans were using Avandia and were forced to change drugs because of these restrictions; they were told that the drug was dangerous to their health, which may not have been true.  Avandia's stock plummeted, the company lost millions on penalties and legal cases, and the drug's reputation is forever tarnished.

GlaxoSmithKline is certainly not a hapless victim; they had a history of data integrity issues with other drugs that led to a mistrust of the Avandia data.  However, when making decisions like this it’s a fine line between being cautious for reasons of patient safety and jumping to unfair conclusions about the risks of an experimental drug or treatment.

Pharmaceutical companies are often placed in a bad light by our society.  We view them as power hungry, money grabbing machines that have little or no regard for the people they claim to help.  This is a gross misinterpretation.  Certainly, they are companies and therefore concerned with profit margins, but our American market system is based on a big risk/big reward theory.  

These companies risk billions of dollars on drugs that have a limited chance of ever getting to market. Clinical trials are hugely expensive and placed under heavy scrutiny along the way.  This is not to say that data cannot be manipulated.  However, even the most cynical among us should admit that a pharmaceutical company would be concerned about the safety of their drug, if for no other reason than that being repeatedly sued is an expensive endeavor.

It is important in a situation like this, with so much at stake, to have all of the facts before making a decision.  It’s nice that the advisory committee has corrected their mistake, but it would have been nicer to have avoided the error in the first place.

Unsung Heroes

It has been on my heart for a while now to write an article about the unsung heroes (or heroines rather) of adoption: the birth mothers, women who carry an unplanned pregnancy to term and decide that it is best to find the child another home.

Over the last few months the stigma we place upon women who put a child up for adoption has become more evident to me.  Listening to some of the subtle ways we undermine that choice, is heartbreaking. We more than imply that abortion is a better option, often it is outright stated.  We suggest that the woman couldn’t raise the child herself, or didn’t care for the child enough to try, when in reality adoption in today’s world is an extremely difficult and loving choice.    

Here is a woman who found herself in an unplanned pregnancy and decided to make an incredible sacrifice in a world of quick fixes.  She sacrificed her body, her physical comfort, and endured societal judgment to give her child a chance at life, knowing that she may never know what that child does with it.  These are women who want so desperately to give their child the best chance that they are willing to admit to themselves and the world that they need help.  Imagine the courage that would take.

We humans don’t like to admit that we can’t do something.  We all have our stubborn “I can do it myself” moments: maybe you scratch your floor moving furniture that’s too heavy for one person, don’t ask your boss for clearer directions on a complicated assignment, insist you can fix that plumbing issue, or install that new dishwasher without even reading the directions.  We never want the world to witness our weaknesses, our perceived failures, or our flaws.  “Never let them see you sweat,” right?  These birth mothers have fought that impulse and won.  What courage…what strength…what unshakable love.

The choice of adoption is also a gift to the adoptive family.  There are so many couples unable to have children of their own, waiting for a child to love.  These people join long waiting lists to adopt, while over 3,000 pregnancies are terminated through abortion each DAY.

I am not trying to say that adoption is the right choice for every woman in an unplanned pregnancy situation, but rather that we should work to change the social stigma of it.  Women who lovingly choose to give their child a better home through adoption should be supported through this difficult decision.

When you see a woman who has made the choice of adoption recognize that she has processed the responsibility of raising a child in her personal situation (whatever it may be) and has said to her child, “I want better for you than I can give.”  What a pure expression of love through sacrifice.

Of DNA and Databases…

You have the right to remain silent, but your DNA can and will be used against you…

On Monday. The United States Supreme Court decided to allow DNA to be taken at the time of arrest from those accused of “serious” crimes.  The DNA sample is taken by a cheek swab and the information is then held in a database.  The sample is run against others in the database, some of which are unknown samples that were collected at crime scenes.  Occasionally, there is a match and the new DNA sample can help the police to solve one of their cold cases.

The case that went to the Supreme Court is that of Alonzo King.  Mr. King was arrested on an assault charge and his DNA swabbed at the time of arrest.  The DNA matched that of an unsolved rape case and King was charged with this rape.  The problem arose when King pled guilty to a lesser crime than the assault. Under current Maryland law, the police would not have been allowed to take his DNA for the crime for which he pled guilty.  King’s attorneys argued that because he was convicted of a lesser crime the DNA evidence should not be permissible in the rape case.

In a 5/4 decision that rocked party lines, King’s rape conviction was upheld.  Kennedy, the notorious swing vote on the court, wrote the majority opinion.  This opinion was that collecting DNA was like fingerprinting upon arrest and not a violation of the person’s rights.  He was joined by Justices: Roberts, Thomas, Alito, and Breyer. 

The dissenting justices were Ginsberg, Kagan, Sotomayor, and Scalia.  Scalia wrote the dissent and argued that the ruling was too vague, the precedent the court was setting was dangerous, and collection of DNA has high potential for future misuse.

I agree with the dissent and believe the court made a mistake with this decision.  It’s not that I would like Mr. King roaming the streets to rape again, but I think some of the justices neglected to look at the bigger picture.  My main issue is with the saving of information, DNA information is not like having your fingerprints on file.  Your DNA is a map of you and we have no idea how this information could be used in the future.   We learn more and more about DNA and genetic makeup every day and the more we learn the more cautious I become about sharing my genetic information.

What about the DNA sample itself?  Is this retained along with the database of information?  It would be one thing to have a database, but another entirely to have the physical sample.  Scientists can do amazing things and all indications point to more incredible discoveries in the world of genetics.   This should give us pause when discussing the creation of a central database for anyone.

A further issue with this ruling is its vagueness.  The court states that DNA gathering is permissible in cases of “serious” crimes.  What does this mean exactly?  What must someone be accused of to lose their right to control the use of their DNA?  Drunk driving, shoplifting, protesting?  Or is it truly for violent criminals?  Murderers, rapists, etc.?  

Taking the sample upon arrest however, flies in the face of our nation’s presumption of innocence.  Keep in mind that not all of those arrested are criminals.  Who knows, perhaps one day you will be in the “wrong place at the wrong time” and your genetic information will be on permanent file without your consent. 

Making decisions based on what we know about DNA today is never a good idea, genetics and manipulation of genes is an ever changing field and we need to be making decisions into the future.  I certainly want to give the police every advantage when catching dangerous criminals, but not at the risk of my or other innocent American’s personal privacy or freedom. 

IRS Troubles…

The Internal Revenue Service (IRS) is being charged with the illegal search and seizure of 60 million medical records from about 10 million Americans.  It is suspected that these records contain personal medical information on people from all walks of life.

The claim charges 15 IRS officials with unlawful seizure of the medical records during an investigation at a California company.  The IRS was investigating a former employee for a financial issue   The company is requesting $25,000 in damages be paid for each unauthorized record, but this case would also serve as a precedent case and provide future guidance for similar situations.

The unauthorized seizure of medical records is a major concern for several reasons:

1) Our medical records contain confidential and sensitive information about us.  The records contain psychological history, sexual history, drug and alcohol history, etc.  Anything you tell your doctor ends up in your chart and I think it is safe to say that most, if not all of us, have at some point told our doctor something we would not like to end up on the network news, or in the hands of a government agent.

2) The IRS has been given a vital role in the management of President Obama’s heath care reform.  In this position they will likely be frequently placed in situations like the one mentioned above.  Because of their position, we will need to trust the IRS officials to maintain the confidentiality of our health information.  This means they will need to only view the records absolutely necessary, and extract only the information they directly need for their investigation.

Many security measures are built into EMR (Electronic Medical Records) systems to keep your medical information safe.  To access medical records at the hospital I have two different password screens and every record I view is recorded.  Also, my name is listed right on the screen in the patient’s electronic file.  This means that I can see the names of the last several people who have viewed the chart for each patient and they will be able to see mine.  This provides extra incentive to only view the records that you have a workplace need to view and allows other employees to see if you have been poking around records you have no reason to be viewing.  

3) When taken from the hospital system information in the medical record is no longer as tightly protected.  When moved to another computer there is always the risk that the information will be misused and the confidentiality compromised.

So, ask yourself: Would you trust each individual employee of the IRS with every aspect of your life and the most intimate details of your personal health history?  No?  Then, we need to be extra vigilant as healthcare reform rolls out over the next few years.  I do recognize that I have a hearty dose of skepticism of the government, but like the old adage says, "plan for the worst and hope for the best."  I think we need to do a bit more of the planning when it comes to the new IRS responsibilities under the Health Care Reform Act.