By Meryl Simon, Miriam Mondlin & Ruth Oron
Update: This article written with my colleagues, Aesthetic Realism consultant Meryl Simon & associate Ruth Oron was published in The Indianapolis Recorder, Indianapolis, IN. It is about inequality in health care. While legislation mandating health care has been passed since the year this article was published—health care still is not for all—because it is profit-driven and therefore, the American public—including babies—are still at the mercy of insurance companies and parents have to worry about whether something will be paid for or not, depending on how lucrative it is for the insurance companies.
The agony which profit-driven medical care is causing in America can be seen in the fact that life-saving technology is not getting to all the people who need it. We deplore this. For example, blood screening tests for newborns developed recently can prevent thousands of babies and children from getting crippling diseases. But hardly any infants are getting these tests. Using tandem mass spectrometry, the tests identify over thirty hereditary defects. These defects — striking one in 4,500 newborns — are treatable by changing a child’s diet, but deadly when undetected. In “Big Gap in Screening U.S. Infants for Hereditary Ills” (New York Times) there is this account of two babies: one who was tested and one who was not:
“Mubashir Younis and Bryce Burke…both were born with rare metabolic diseases. Mubashir was born in Massachusetts just two months after the state expanded the screening for hereditary diseases it does on newborns. The test picked up his propionic acidemia, which can cause coma, brain damage, and even death. Treated and watched carefully, he is growing normally.
“Bryce, who has a metabolic disorder called MCAD was…born in Fort Worth, and Texas still does not routinely screen newborns for it. When he was 19 months old, Bryce…had massive seizures and fell into a coma. Brain damage left him unable to walk or talk. “He’ll never be a normal child or person again,” said his father, Robert Burke.”
It is unconscionable that out of four million babies born every year in the United States, fewer than 300,000 are screened. In a recent Parenting magazine article, “The Price of Life,” there is this:
“Most of the illnesses are so rare that public health officials don’t think testing for them is worth the money… Few [insurance] companies will pay for the screening, leaving states to decide if they want to pick up the tab and hospitals the option of offering it only to those who can afford it. The debate is…complicated by…free market competition.”
That the well being of a child should depend on a debate about cost and “free market competition” is contempt for human life. Eli Siegel, the great American philosopher and founder of Aesthetic Realism defined contempt as “the addition to self through the lessening of something else.” Contempt, he explained, is the basis of our economy — the profit system, where a few individuals profit from the labor of many and from the very things people need in order to live — food, medical care, housing.
In “Ethics — the Only Answer for the Economy!” Ellen Reiss, Aesthetic Realism Chairman of Education, explains: “Once you are after profit, you can’t be too interested in what people deserve…it will cramp your ability to make money from them.”
Despite reports to the contrary, the much-touted “success” of the American economy is a fraud. People are angrier and more fearful than ever because of the prohibitive cost of health care, prescription drugs, and the increasing cuts in Medicare and Medicaid. In our “prospering” economy, millions of Americans are forced to live without health insurance.
Eli Siegel stated “While one child needs something he hasn’t got, the profit system is a failure.” And he said with beautiful passion: “Nobody should ever have to pay for having his body [cared for], even if he wanted to pay…. The idea of people worried about their health [and] worried about money is barbarous. It’s ego corruption.”
The ill will in health care is apparent in this statement from the Times article by Dr. Richard I. Kelley, an expert on metabolic disease:
“Ten years ago, I could say to…families that there was no way we…could have prevented these deaths or injuries…Today…I can no longer say [they were] unavoidable.”
Health care must be based on good will. Mr. Siegel defined good will as “the hope of a person that good things happen to things (things include people); with the desire to know what those good things are.” He explained: “Where good will so far has shown its power is in sad results all over the world through its absence.” The ruined lives of so many children, like that of Bryce Burke, are some of these sad results.
We respect the parents, scientists, doctors and people in government working together to make expanded newborn screening universal and publicly funded. We have learned that for the American health care system to be fair to all people, it is crucial that the life of a baby in Indiana, California, New York be seen as real as one’s own. For this to be, it is necessary for legislators, doctors and all Americans to answer this ethical question stated by Eli Siegel: “What does a person deserve by being alive?”
Aesthetic Realism is taught in New York City at the Aesthetic Realism Foundation, a not-for-profit educational foundation; 212.777.4490; AestheticRealism.org
This article was published in 2002. Clearly, in 2015, Americans need health care that is for ALL!