My nephew Bryan turned 39 this past week. Badly burned and scarred by a home fire ignited by a space heater during his infancy, this young man has endured a lifetime of challenge from skin graft surgery and now an aggressive cancer. Through it all, he has maintained an extraordinary self reliance and wisdom well beyond his years with an endurance for pain that would wilt a navy seal.
Recently, when oncologists determined that there was no real way to arrest the cancer even with amputation, Bryan opted to live out his days with limbs intact, though he long ago lost a hand in the fire. Today, Bryan is fighting pain without medication because he falls into a major crack in obama care. He had a modest settlement from the fire, hence no Medicaid, and his attempts to get private insurance thus far, have been unsuccessful. Discrimination based on pre-existing condition may be impermissible, but who exactly is making sure it doesn't occur or is hidden beneath a blizzard of paper excuses?
Some months ago I lobbied hard to have him seen by the supposed expert on amputations done on burn victims. Using every ounce of former ambassador influence and a lot of just outright begging, I finally succeeded in having Bryan evaluated by -- I was told -- "the specialist" of the University of Chicago. Seeing the specialist ultimately hinged on Bryan's ability to pay. Bryan had attempted to apply for Obamacare, but the online government site was still malfunctioning. A very kind young woman who very much enjoyed being of help to others completed the application manually, but somehow Bryan still lacks coverage. The short term bottom line imeant that Bryan paid the $415 consultation fee in cash. The 5 minute audience led to nothing or worse.
Worse? I have since learned from Bryan's brother, Timothy, that despite asking the good doctor to be gentle with the fragile graft locations on Bryan's leg, the doctor ripped open bandages in a manner that Tim reports is still bleeding 9 months later. I was not present except by phone, so I cannot speak to Tim's assessment, but I do know that notwithstanding more pleading with the specialist at the U of Chicago to follow up with the medical personnel associated with the Hospital where Bryan was taken by ambulance to be initially evaluated and told that immediate whole leg amputation without prosthetic device was the only option, no medical follow up occurred and this smart, mature beautiful nephew has once again been left to fend for himself.
The bottom line: Obama care remains an unfulfilled promise, the preference given insurance companies and our governments tolerance of the price fixing that implicates insurers, doctors, hospitals, including the price driven complicity of educational institutions like the Univ of Chicago, or at least the staff and doctor we encountered, and the profiteering of pharmaceutical firms that guarantees only bonus for an extremely wealthy few, illustrates how poorly the national health needs of Americans have been left by my dear incumbent president and the do nothing congressional culprits who daily embarrass the idea of democracy. The candidate who has any sense of these matters and can muster any genuine empathy for patients like Bryan will be the only candidate worth paying attention to in 2016. For now, the only truly sympathetic ear given to Bryan's needs has been that of Hospice, and while rendering one's death and final illness with some sense of dignity is unquestionably important, can it really be true that the only aspect of health care that the U.S. Accomplishes well is not the preservation of life but the facilitation of death?
When I was serving as US Ambassador in Malta, my driver and friend asked "how is it Ambaxxatur that a rich country like yours leaves the care of the sick unaddressed?" I had no real answer to give in a country with universal care being delivered in state of the art facilities. However, one Maltese medical student suggested an answer which he hesitated to articulate out loud lest the truth be misperceived as insult. " Ambaxxatur, " he said, " we study medicine as one of the most obvious ways to be of service to others," and he said " that is the wealth or abundance we seek." He was indeed too polite to point out what it is we seek.
God bless Bryan on his 39Th birthday. God save the United States. Reporting from Chicago, a city once described by Carl Sandburg as "the city of big shoulders." As chicago is my birthplace, and that of Mrs. Clinton and the adopted home of President Obama as well , may those shoulders not have so weakened that it no longer has the strength to provide decent care for a single, stoic victim of tragic accident.
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