Emory Healthcare Denies Kidney Transplant to 2 Year Old Based on Father’s Parole Violation

The phone rang this evening waking me from a sound sleep. It was a friend from one of my chronic illness groups on the other end. “You’ve got to hear this!”, a sense of urgency in her voice on the other end. “I thought you would want to know that Emory has done it again. This time they’re denying a 2 year old boy a kidney transplant!” She related to me the story of a family who was being blatantly discriminated against simply because the boy’s father, Anthony Dickerson, the potential donar and a match, had been jailed for a parole violation.

Initially it appeared that they were willing to work with the family and that the only stipulation holding up the life-saving surgery was that the child’s father needed to come in to have some preliminary pre-op bloodwork done on September 29th, but as the man was still in jail and could not be released by the date Emory had requested he come in, by the time he was released it seemed suddenly all bets were off.

What had started out as a relatively simple hurdle to overcome now became a growing list of demands and scrutiny made by the Emory Living Donor Transplant team; now requiring Mr. Dickerson to supply evidence of compliance with his parole officer for 3 months before his son would be considered again. The the only option now given the family  was the regular transplant list. We all know that many have died without expedited transplant offered by such hospital teams, and for a young child who was born premature with malfunctioning kidneys such a wait could very likely result in his early death.

Although none of us witnessed what went on in that meeting behind closed doors, it is more likely that Emory’s top officials such as its Chief Medical Officer, whose letter to me denying me care at a crucial time; copy uploaded in a previous post, were the real ones behind these new obstacles placed in the family’s path.  Emory keeps its doctors on a short leash, especially where it concerns delicate matters that might garner bad publicity for the biggest healthcare system in Georgia. There is little doubt that risk management and their legal department were consulted regarding the ramifications this situation might have for Emory, possible liability and/or possible negative impact on its public image. For all the cases that go public there are probably many more that are routinely brushed under the rug, patients too exhausted and demoralized to fight for their rights.

One might ask “Can’t they just go to another hospital for the transplant”? but in this state it’s not as simple as one would assume. Patients that are outcast from Emory’s system find themselves in an ongoing awkward situation in approaching other local doctors and hospitals for the care they need, as although there are facilities not directly owned or affiliated with Emory, there is almost always a soft connection somewhere; either that doctor or hospital utilizes Emory’s medical equipment, labs, certain clinics, or they have a “one-hand-washes-the-other” working relationship in which they give mutual referrals. This is even true with their direct competitors to some extent. Therefore this child’s father would likely face the same scrutiny at these other local facilities as at Emory, and there is no telling what has been written in the records regarding the boy’s father’s criminal record and the requirements placed on him for his son to receive the transplant any time in the future. De’Aja Asbury has created an online petition similar to the one that was created for me. The petition can be accessed at https://www.change.org/p/emory-hospital-approve-life-saving-kidney-transplant-for-2-year-old-boy-before-it-s-too-late

A local news team has covered the story. See this footage below;

At this point the family’s best chance for this child’s survival is to try to get a compassionate release for the child’s father so that they can go to an impartial hospital for the transplant, as soon as possible. They will most likely have to approach officials on the federal level in order to have a fair chance of having their request accepted. Godspeed to this child in getting the surgery he needs.

 

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One Year Later Emory’s Poisoned Records Still Block Access To Care

The holidays have come and gone with a whimper, it’s now 2017, and my medical care’s still stalled a year after the abuse incident in Emory’s ER, and a year and a half since I first reported the new neurological … Continue reading

Trump Presidency Bad For People with Chronic Illness/Disabilities

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Tuesday November 8th’s 2016 political upset was a wake-up call to all of us in the chronic illness community that we have our work cut out for us when it comes to our quest for respect, equal representation, and full inclusion (which includes having our medical needs met in a timely manner).

The worst of it is not just the opinions espoused by Donald Trump, but that these same bigotted opinions appear with such frequency among average citizens in modern society, and that they can and do drive the making of public policy; AKA…the rules that govern our real lives! 

Despite that many are uncomfortable discussing and even thinking about politics, the reality is that where the rubber meets the road policy gets made with or without our input.

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The challenge in the face of such a punishing blow as we saw earlier this week is to stay engaged and not give up the good fight for what we know is right. Better that policy be created with our input than without, and under our watchful eye than in the secrecy of smoky back rooms.

Ari Ne’amen, the President of Autistic Self-advocacy Network, calls the election of Donald Trump “a disaster” and predicts that if Trump actually follows through with the things he has stated he plans to do once in office the risk for people with disabilities is serious and very real.

We already know that one of Donald Trump’s big goals is to “repeal Obama-care” the Affordable Care Act. Along with this is the Medicaid expansion for people whose income is too low to qualify for the Affordable Care Act Insurance Market, large numbers of working poor who otherwise are cheated out of health insurance benefits by greedy big corporations who employ them often at starvation wages, cut their hours, and pull other ploys to avoid providing them any long-term job stability and financial security just to pay the top brass more. He has even stated that he’d like to do away with a minimum wage altogether! (Clearly he’s not looking out for the American worker’s best interest, but instead the interests of big corporations).

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We already know that Donald Trump is unsympathetic/unempathetic to the plights of undocumented immigrants who have often had to flee deadly drug cartels and other terrorists on an emergency basis to come to the US for safe refuge.

His comments regarding Latinos are especially heinous referring to them in such derrogatory terms as killers and rapists , casting aspersions upon the Mexican Government as if to imply that infiltrating our country with unsavory characters were their intent! 

He kicked a New York Times reporter of Latino descent out of an Iowa news conference and had him forcibly removed, and he has made derrogatory remarks about former candidate Jeb Bush implying that he was unfairly biased for Spanish speaking people because his wife was Latino. Most distubing of all anti-Latino comments was his response when confronted with a situation in which a Hispanic man was beaten in his own home by Trump supporters; stating that his supporters were “passionate”.

No, I’m sorry to break it to His Highness, but THAT’s not merely “passionate”. THAT is a HATE CRIME! “Passionate” is peaceful protest, or a civil debate of the issues.

His blithe response and gross minimization regarding this act of discrimination, hatred and violence is dangerous in that it has the effect of normalizing something that should never be socially acceptable in a civil society! It tells others out there who do not want to control their anger and who believe the rules and laws don’t apply to them that violence is OK as long as you are doing it in the name of a belief (however instrinsically immoral it may be). The now President Elect almost seemed to gloat over the fact that such violence could be passively incited in his name.

We must ask ourselves; if he’d turn his head to this sort of hate crime how many other civil rights issues will he turn his head to as President?

And it’s not only immigrants he disrespects. It’s women, too. I think most of us have seen at least a few off-color comments he’s made on the news or on Twitter, coverage of his intention to reduce a woman’s right to free choice and other equal rights issues for women such as opposing equal pay in the workplace, but you may not have been aware of this very graphic video which caught blatently sexist and denigrating comments he made about/against women here .

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Notice here that Trump dismisses the severity of his salacious remarks and fails to take responsability for his clearly treating women as though they were objects to be conquered for his own narcissistic gratification. He only apologizes that anyone “was offended,” not that he did it. Sound familiar??? It’s the same sort of non-apology Emory Healthcare issued in their letters which stated “sorry you aren’t satisfied.”

And speaking of big corporations; Trump has on numerous occasions stated his intention if elected to roll back regulation on big corporations, so it is likely that what happened to me is not the last time this atrocity will happen to an innocent patient, and the offending healthcare corporations will get away with it. If anything our country is in need of more regulation of big corporations; not less!

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They’re already running rough-shod over us individuals and the fox is charged with guarding the henhouse leaving big gaps in justice for those with little power in our society. Funding has already been cut to state and local programs such as Legal Aid, and to federal programs charged with going to bat for people who find themselves discriminated against and stuck out in the cold.

As I have outlined in earlier posts; people with Autism/Aspergers and other little-known and poorly understood conditions that frankly doctors and healthcare systems would rather pretend don’t exist than to treat receive short shrift when it comes to services. They are considered costly and time-intensive and therefore a bother to such corporations, so there is much pressure to down-grade the level of care to individuals with such conditions, and if that doesn’t fly they are dumped summarily with very little public outcry resulting and next to no real advocate.

Considering that the numbers of people with many of these (as corporate healthcare sees them) “nuisance” conditions are rapidly becoming the majority and (it goes with out saying) these are a formidable voting block. This is what we must impress upon the masses and upon Congress in our efforts to educate and consciousness-raise.

While our kind may still be considered less crucial/less important and our views less influential in forming our country’s priorities, we are a rapidly growing segment of the population and one day soon we will be a demographic that politicians wish to court.

Trump seems to have a penchant for insulting people with disabilities employed by the media. I guess deep down (well not so deep really, LOL) he doesn’t believe that people with disabilities can be strong contributing professionals of news agencies.

During an NBC News interview he slammed a columnist, Charles Krauthammer, who is paralyzed from the waist down specifically using his disability as the butt of his mean joke; “Then I get called by a guy that can’t buy a pair of pants, I get called names? Give me a break.” It wasn’t enough for him to insult the man’s stance on the war in Iraq and other topics, and to call him “underrated,” but to attack his having a disability and his needing help for that disability is beyond the pale. 

If anyone has any doubt that a Trump Presidency is harmful to the interests of the ill and disabled you have only to watch this clip in which he mocks in one of his speeches the spasticity in a reporter’s hands, Serge Kovaleski who has arthrogryposis, a joint condition.  

He later goes on to accuse him of “grandstanding about his disability.” Further, he questions “his level of intelligence”, painting him as a nobody that is too unimportant for Trump to remember. Nice attempt at gaslighting, Trump, but a big fail; the sarcastic impression shown in the above video speaks for itself.

Pretty appalling, huh! You might expect this kind of juvenile banter from a prepubescent hamming it up and trying to garner some street cred with his friends/peers by picking on those he views as easy targets, but not from the (now) leader of the free world (soon to be alot less free than before if we don’t stay on task in standing our collective ground steeled against the inevitable attempts to cut corners on those he deems not viable enough). 

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Trump’s assault on disabled people isn’t even limited to his liberal detractors.

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Even veterans with disabilities have been subjects of his particular type of abuse, including John McCain about whom he openly stated that he didn’t understand why people considered him a war hero after being captured and held for years in a prisoner-of-war camp, forced to endure horrendous and permanently crippling torture. Trump’s audacious comment that he “prefers soldiers who were not captured” is another telling remark of honking disrespect and lack of empathy which gives a clear indication of his values, and motivations.

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It strongly hints at his predatory and orwellian view of the haves versus the have-nots; the viewing of the underdog as somehow less viable, therefore less deserving than his more advantaged counterpart. His singling out of various groups to be badly regarded thus badly treated is another version of the concept of Untermenschen; a term coined in Nazi Germany during WW II; (translated: Under Man, or sub-human) made new again.

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The type of thinking Donald Trump engages in is of the same mind-set espoused by Hitler and other such dictators who went on to carry out their horrendous bias in policy. It seems I am not the only blogger who sees that parallel!

Michelle Obama stated it very accurately in a speech made earlier illustrating why Donald Trump is wrong for America.

She says; “Maybe it’s easy for him to mock people with disabilities because he’s unable to see their strength and their contributions.”

That, my people, is the root of discrimination; the inability to see a certain demographic’s value and the inability to view them as bringing something important to the table.

This man clearly lacks the maturity and seasoned professionalism (not to mention the experience) required for the job of President of the United States of America, and much more than merely annoying, his rhetoric is dangerous to those who due to medical conditions require accommodations in order to have as much quality-of-life as possible. In politics, as in life, one might be able to con (or buy) one’s way into a job, but doing the job day in and day out is a whole other kettle of fish! 

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It’s appalling that anyone would want somebody like this to be President, and just as appalling to hear some of the excuses being generated for his prejudices and blatant disrespect for those who are less advantaged than he. (Note that he is constantly telling us how wealthy he is. And how does that at all qualify him to run the country which includes mostly people who are not wealthy and whose lives in no way resemble his?)

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Maybe in time those who voted for him will see that this was a big mistake and that in the end this is not a man who represents their values, and maybe they will move for a reversal. (I hear that Michael Moore predicts he won’t last the 4 years). Only time will tell, but those of us who’ve known this all along must continue to shine a light on the humanity that is lacking and the restoration of which is so badly needed, and keep working to improve things for people with disabilities/the chronically ill.

For those who are interested in an update on me; I will get one up soon. For a number of reasons I have found it hard to write over the past month. I had a spoon left tonight and just felt that this topic was screaming to be put down on paper given the timeliness of the election, as its ramifications affects all of us.