Elizabeth and Josh Margulies are parents of a 2-year old boy, Benjy. Here is a description of the disease.
Benjy suffers from infantile Tay-Sachs disease, a condition that prevents the body from producing exosaminidase A, an enzyme that clears substances called gangliosides from the nerve cells in the brain. Children who suffer from the disease lose the ability to see, hear, swallow and move. Most die before the age of 3, and, in the past, all died by the age of 5 or shortly thereafter.
Aetna has paid for all of Benjys care, an umbilical cord blood stem cell transplant, skilled nursing care and physical therapy. However, Aetna recently told the Margulies that, “a 60-day contract limit on therapy applies to the forms of therapy that Benjy is receiving” and “Aetna told the Margulies family it would stop paying for skilled nursing because it believes skilled nursing is not medically necessary.”
The Margulies family is now applying for New York state benefits for Benjy and “asking Aetna in the meantime to provide coverage for skilled nursing care while the application for state skilled nursing care benefits is pending, to avoid a gap in care.”
Because of this turn of events for the Margules family issued a press release through U.S. Newswire in order to organize a letter writing campaign, www.dearaetna.org, on behalf of their son. Almost a day after the press release showed up on U.S. Newswire, “Aetna agreed to pay for 10 hours a week of nursing care for another 3 months.”
This is what Cynthia Michener, a spokesperson form Aetna, had to say about the Margulies situation, “No matter how strongly we may wish to act on our personal desire to provide unlimited benefits for any one member, we cannot do so in fairness to all of our members who access benefits in accordance with their medical plan guidelines. These limits are put in place to create affordable health benefit plans that employers can purchase to provide the maximum amount of coverage for as many employees as possible.”
Reading the comment from Michener it makes logical sense as to the reason why Aetna can’t provide unlimited benefits because of the current health system we live in. Working within a for-profit health system Aetna can’t be throwing around endless money to every covered person or their stock will tank and they will go bankrupt. If we lived in a country with universal health care the Margulies family would not need to worry about losing coverage, a coverage gap or have to apply for coverage from the state of New York. These are obvious deductions I am making yet so important in order to prevent so many more families from having to go through what the Margulies family is going through now.
Doesn’t everyone deserve health care in this country regardless of if they are always healthy or have chronic problems or diseases?
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