The Road to Health Care Reform: The Human Right To Quality Care

This issue of health care reform in recent weeks has become so politically charged and divided.  I believe this divide represents a great disparity between the “haves” and “have nots”.  Many people worry the reform in the wrong hands cannot possibly work but also will lead to many falling through the cracks.  For one, issues of elder care as our population ages needs to be addressed.  Still, there is a matter of cost. Conservatives believe the reform will tax us too much (at least 50%), but also give the government power over who lives and who dies.  There will be the forgotten.  Still, have the conservatives put a face on health care reform?  Do they know how reform may bring about a change so grand no one can possibly understand its impact?  It has never been tested at this level and we will never know unless we try.

Meanwhile, young working families struggle to put food on the table and purchase “Back to School” supplies.  Many worry about their jobs and the rising cost of gasoline.  Also, many are living the nightmare of a broken system that does not value the right to quality health care and makes access to such care frustrating and tedious.  So this week before I put a face to health care reform, I ask the following question: When did health care stop being a human right? Why are there no options in the existing system for the poor and working classes?  What is wrong with the option of having a choice instead of being forced into subpar insurance coverage like the high-deductible plans many working class Americans are offered?  Affordable coverage means taking the risk you will never be chronically ill but what about those who fall into a large demographic of people with preexisting conditions?  Many conservatives state that Health saving accounts (or HSAs) can work.  I don’t think they understand.  Most Americans do not have savings, nor do they have the income to save and some even struggle to eat.  Many working families are surviving just above the poverty level.  Conservatives believe that charities can aid in the health care dilemma by filling in the gaps of private insurance.  Do they not know that many charities are already overburdened?  Many do not think the system is broken and nor do they think health care is a right for all Americans because it is not addressed in the Constitution. Still, do not the building blocks for American government and law come from the tenants of Judeo-Christian belief systems?  Does this not mean we must as a society take care of each other, especially those less fortunate and do good deeds?  Still I believe life, liberty and the pursuit of happiness, the essence of our forefathers’ message, suggest the right to good health.  Access to health care should be an inalienable right, a fundamental value for this nation to embrace.  Instead, many people disagree that health care coverage is indeed a right but instead a choice.  For many, they believe it comes down to an option like any other insurance.  You choose to insure your car, your life, why not your health? Point taken: Many believe health care should stay out of the hands of government.  Health care and the choices it represents should be in the hands of families or, in other words, the consumers.

Rev. Sophia DeWitt, Director of Health, Housing and Senior Services Ministries, Fresno Interdenominational Refugee Ministries (FIRM, Inc.) expresses her concern over the attitude toward health care as being a privilege. “From a faith perspective, I would say it is immoral because it denies human dignity to so many, rations care based on income and costs lives– and yet our political system is totally incapable of solving the problem.”  Our existing systems do not want health care in the hands of people but rather big, moneymaking corporations.  Still, the liberal view also has drawbacks to the reform because it seems too socialist.  Regardless, the chances of the reform passing are small because the legislation lacks the language to define who will benefit from such reform.  Truly, this issue is not about fancy words or which side of the political coin is right; it is about families torn apart every day by real-life altering health care decisions and a system that does not focus upon those who really need quality care. These people are out there, each with a different story of how the current health care system has failed them.  They may be your neighbors or even a family member.

Picture this: You have been sitting in a hospital emergency room for three and a half hours with a sick child running a fever, a child with a history of infection to his central line.  The situation: You have no private health insurance coverage because you are a single mother taking care of two disabled children and therefore are unable to work.  You are at the mercy of government health care programs like Medicaid. Imagine also: You have been evicted from your apartment because your landlord does not like the fact there is a constant stream of health care professionals coming in and out of your home to take care of your son, who is deathly ill.  To further the nightmare: You are now on a waiting list to travel to Boston for further testing of your son’s gastrointestinal tract.  Mind you, the doctors have taken a tissue biopsy sample twelve weeks ago.  They said the sample was sent to Germany; you have not received any results.  Still, you wait to go to Boston and your son in the meantime has repeated infection after infection affecting his ability to maintain a healthy weight.  When he should be playing and enjoying the sunshine, he must sit in his “chair” to receive the nourishment and medical treatment he needs to stay alive.  And still you wait for Boston.  Next, you were told there may be a problem getting to Boston because you have a car, an old hand-me-down clunker.  Owning a car disqualifies you from free medical transportation via government guidelines for income.  Unless he is in the hospital, you must find your own transportation.  Your brother has agreed to drive to Boston but now you’ve found out that the Ronald McDonald House, where you have stayed in Albany, the Boston chapter only caters to parents of cancer patients.  Where will you stay in Boston where the less expensive motel is $150 a night?

This is Sarah and Sheldon Wagner’s story.  Sarah Wagner of North Creek, NY has a chronically ill son named Sheldon, who without everyday medical care would die.  Sheldon will be four years old on October 8th and he has been hospitalized eighteen times this year for numerous infections including staph.  He has been sick since birth.  The doctors do not know exactly what is wrong with Sheldon, just that he has trouble eating normally. He has a central line, which feeds him and provides regular medications to his circulatory system.  This central line has been problematic because it is prone to infection but Sarah has been told without this device, he would die.  Sarah asks Sheldon, “Are you my wonder boy, my gadget boy?” because without the innovation of medicine Sheldon would not be here. His gadget needs constant medical attention from daily caregivers. While the year is not over, it is not unusual for Sarah to drive nearly two hours from her home in the Adirondacks to Albany, NY so that Sheldon can receive the best of pediatric care at Albany Medical Center.  In June, while most children were enjoying summer with an ice cream cone or riding bikes in the park, Sheldon was in isolation from visitors and the outside world so that he did not catch any more contagions.  Many times, Sarah has traveled in the middle of the night to a hospital with her mother or brother for reliable transportation but mostly moral support.  This situation has become her life.  For the sake of Sheldon’s health care, she has sacrificed her own well-being.  This situation has presented a strain emotionally and financially upon her family.  While Sarah receives public assistance, she is unable to work as Sheldon’s primary parent.  With the support of her family and continued treatment, Sheldon is able to be home until they leave for Boston on September 13th.

Sheldon has an endearing spirit, a radiant soul that touches all who visit.  His laughter is infectious and he’s got the talent for numbers.  He could be a future NASA rocket scientist.  Sheldon never questions the treatment, sometimes he is frustrated but he always has a smile for you.  Never is it, “Why did this happen to us” or “Why is my little boy so sick?” but really Sarah is more concerned with “What can I do to help my son get better?”  Like any parent in the same circumstances, she must trust the knowledge of Sheldon’s doctors but mostly she must play by the rules of Medicaid.  It seems this creates a whole new meaning to red tape and redundancy.  She has had to make some drastic decisions alone for Sheldon’s sake but many have been at the mercy of the Medicaid system and what that system has been willing to provide for Sheldon. She must ask questions and make sure all of Sheldon’s needs are met.  If this means calling the doctor’s service at four in the morning, she does it.  Still, this whole situation comes back to the waiting list for the Boston visit.  If Sheldon was the son of a doctor, lawyer, senator or even a celebrity, do you think he would have to wait?

While Sarah may not fully understand the health care reform, she understands that there must be a better way to ensure that every person in America receives quality care and is treated equally.  When asked if a public option might help someone like herself or Sheldon, she agrees that just talking about health care is the catalyst for change.  “The first step is admitting there is even a problem,” she says.