In Britain this morning, there is an 11-month old child named Charlie Gard with a genetic disease that condemns him to death. The disorder, Mitochondrial DNA Depletion Syndrome (MDS), is a group of disorders caused by abnormalities in various genes that result in mitochondrial failure. The mitochondria, you may remember, exist in all the cells in our bodies and produce the energy we need to live; without them we die.
What is remarkable in the press reports from the Washington Post and the Guardian this morning are the offers from Mr. Trump, to assist in bringing the child to the United States for “treatment”. The same man whose “reform” of the Affordable Care Act (ACA) condemns millions to walk our country’s streets without health care, that ensures the deaths of thousands from preventable disease, is willing to intervene in the British health system, in the lives of a family tragedy, to offer hope where there is none.
There are some forms of this syndrome that are treatable – sometimes with liver transplantation, for example – but Charlie doesn’t have the treatable form. MDS presents in different ways, and is classified as involving muscle (myopathic), brain and muscle (encephalomyopathic), liver and brain (hepatocerebral) or the gut and neurologic systems (neurogastrointestinal). It appears that little Charlie has the brain and muscle form of MDS, caused by genetic abnormalities in one of three genes; abnormalities that cannot be fixed. Charlie’s form of MDS typically presents during infancy with loss of muscle tone and severe neurological features.
And, as certainly as night follows day, the particular form of Charlie’s MDS will lead to his death; there are no treatments. The care of this child has been in the excellent hands of British specialists – the British National Health System has flaws, but is quite good – and the lack of options appear to have been discussed with the family and even in the courts. Why has this sad case gone to the British Supreme Court and European Court of Human Rights ? Because the physicians asked to withdraw life sustaining therapy as “…Charlie would suffer significant harm if his suffering was prolonged without the realistic prospect of improvement….” The therapy that is apparently being considered if the child is transferred to the United States – likely infusions of folinic acid, succinate and/or ubiquinone, molecules that might decrease the frequency of seizures and perhaps even improve Charlie’s ability to communicate – will not change the outcome of this disorder; Charlie will die.
And herein lies the irony of all of this. There is no underestimating the sadness and tragedy that is Charlie Gard and his parents. The loss of this child is a loss to us all; who knows what he could have become, how many lives he would have touched ? But he cannot be saved. It is our duty to ensure he at least dies with some dignity and humanity.
But what of the millions in our country who will be left adrift by the Republican rush to “repeal and replace” the ACA or – as Trump recently said – just “repeal” ? What of the thousands of preventable deaths that will result from this vile and inhumane legislation ? There are treatments for diabetes, hypertension, breast cancer, cervical cancer, pneumonia, testicular cancer, tuberculosis, measles, influenza, heart disease and the rest of the 33 causes of death that are amenable to prevention by health care. But Mr. Trump and his followers are willing to deny these treatments to our people. And they will be denied, make no mistake about it, if the American Health Care Act is passed into law.
With crocodile tears, our unqualified President opines on medical therapies and ethical principles for a child thousands of miles from us, while cruelly preparing to deny basic care to the people of our United States.
Happy Fourth of July America.
