The Charlie Gard Case - Why Political Rhetoric Can Never Be Ignored...

  Charlie Gard died three days ago after his life support was withdrawn.  He was a British infant born less than a year ago with infantile onset encephalomyopathic mitochondrial DNA depletion syndrome.  There are three genetic subtypes listed on OMIM and I those linked in the Supplementary material below.  Note that the capital letters in the titles is a convention of OMIM and not my addition.  The medical details as well as the basis for the legal decision is available online.  In this case the court sides with the Great Ormond Street Hospital in deciding to withdraw life support because of Charlie Gard's terminal medical condition.  In the summary an American physician is mentioned who apparently suggested that nucleoside therapy might be tried even though it has never been tested for this condition in humans and it has never been tested in a mouse model of the human disease.  The judge refers to the culture around these issues in the USA as being "slightly different" in that anything might be tried.  This court document was apparently written before Charlie Gard was examined by the American physician Michio Hirano, MD who offered Nucleoside Bypass Therapy an experimental treatment for mitochondrial diseases.  The parents of Charlie Gard ended their legal case to bring him to the United States for experimental treatment on July 24, 2017 - four days before he died.  In the language of contested court cases - their attorney said that new tests confirmed that the experimental treatment would not help.  In fact, there was no real evidence that the experimental treatment would have ever helped.

The conflict between Charlie Gard's parents and the Hospital began after they successfully raised enough money to take him to the USA for treatment in January.  The Hospital's argument at the time was that it was not in the best interests of their patient and subsequently that the treatment being offered was unlikely to be of benefit.  The court documents describe their opinions included the opinion of an expert in mitochondrial diseases who had authored 140 scientific papers and book chapters. He is described as a person with grave neurological disease who is maintained by life support and the in the opinion of the Hospital staff the life support should be removed and he should be allowed to die.

From a political standpoint, the right wing in the United States picked up on the case as a case of a socialist health service against the rights of the parents or as Brook Gladstone (On The Media) said: "a martyr to statist tyranny."  On that same show, Melanie Phillips a conservative blogger and writer for the Times of London described the conservative commentators position in the US as "ignorant and ideological".  She describes their writing about the case as something that could be used in the fight to repeal of Obamacare.  She points out that conservative commentators in the UK are not invested in portraying the National Health Service as a killer.  She points out that right to life activists and that agenda only exist in the US.  It is part of a long succession of political rhetoric that suggests that the risk of a more openly government run system is that it puts the government between the patient and the doctor and the decisions are more likely to be consistent with what the state wants.

I decided to read and footnote one of the articles from the right (5) on this dilemma. In her article on Fox News Health, Penny Young Nance makes the case that the problem is really big government and socialized medicine and that no government can take away God given rights.  The counterpoint to this opening premise is that the political right generally does not view health care as a human right.  They view it a a business and something that must be earned based on merit.  Her second premise is that American healthcare is cutting edge and driven by cure as opposed to National Institute for Health and Care Excellence in the UK that is driven by profit.  Both elements of that second premise are erroneous.  I don't think that there is any evidence that the UK uses less technology and irrespective of how they use it their outcomes are better at a fraction of the cost than the most expensive medical system in the world in the USA.  I also don't know how socialized medicine is making profits (and for who) by denying unnecessary care.  The third premise is that technological advances like the eradication of smallpox requires a free market approach to innovation so that mistakes can be made.  In actual fact, smallpox eradication was a long effort of physicians, academics, public health departments, some private industry, and the World Health Organization.  That is hardly a free market effort. It could easily be argued that it would not be profitable enough for American companies to enter.  She goes on to critique the Independent Payment Advisory Board (IPAB) under ObamaCare as being similar to NICE as a health care rationing body.  NICE is not a rationing body and this opinion leads me to question if she ever viewed their extensive web site of some of the best medical evidence collected in the world.  She conflates IPABs ability to control prices as "shoving us in the direction of single payer health insurance." Every more successful and far less expensive health care system in the world has cost control mechanisms.  Her summary statement connects the Charlie Gard case and IPAB:

"We should heed Charlie’s case as an example of gross government overreach and repeal IPAB immediately."

Only the political right wing in America can draw such a connection.

The rhetoric of the political right, is basically rhetoric that is thinly disguised as concern about individual rights.  It requires a complete suspension of the current reality in health care. Those realities include the following.

1.  Medicine is best practiced by physicians especially the ones taking care of you: 

In Charlie Gard's case he was assessed and treated by experts from multiple specialities in the UK.  No reasonable American physician would doubt that he received expert care and care that is probably available in a small minority of medical centers in the United States.

2.  Medical ethics can easily be politicized but their foundation is more sound than politics: 

There are two relevant concepts here - futile care and experimental treatment.  In this case the best summary appears to be that there was really no evidence that the experimental care would do anything to alter the course of Charlie Gard's terminal neurological illness.

3.  Political opinions on ethics don't have to be consistent:

There are striking inconsistencies in the positions offered by the political right.  At the level of personal choice they make it seem like there is a panel that will be taking healthcare choices away from Americans.  In fact, the panel will be addressing prices and cost containment.  The political right also seems to have completely ignored how health care is rationed by health care companies and subject to racial and socioeconomic disparities. We are currently in the midst of a very inadequate system of mental health and addiction care based on 30 years of rationing by private American companies.  If you are elderly and have a significant illness in an American hospital managed by an American company, you or your family is likely to be approached about the idea of palliative care or hospice care.  It might be recommended that you forgo certain diagnostic tests or procedures because of your illness and transfer to a hospice setting. Nobody discusses the fact that these recommendations are aligned with the financial interest of the hospital.  If you stay there too long or use too many resources - they lose money.  This is the current system of care in the United States. As most people know - you don't have to worry about the government.

You do have to worry about the the corporations making profits by charging you plenty of premiums and copays and deciding how they will not have to pay that out in services.  That is the rationing that occurs millions of times a day in the US.  

4.  How is a market system that appoints private businesses as proxies for rationing services and  that ignores the health of tens of millions of people ethical?

As noted above - as millions of people are uncovered, tens of thousands die and more suffer.  If your ethical priority is choice - these people do not have a choice.  If your ethical priority is the sacred nature of life - these people have immediately been devalued.  Unless I missed it - these seem to be the main ethical arguments of the political right.

On the whole idea of the government getting between you and your doctor - there are currently two people standing between you and your doctor in the United States.  The first is your health care company.  The second is the company that manages your pharmacy benefits.  If either of these companies does not want to act on your preferences or your doctors orders - they can make life miserable for both of you.  The level of misery can extend from a flat denial of service or medication to saying that you don't meet their medical necessity criteria for a service.

The only logical conclusion here is that American healthcare is highly flawed from an ethical perspective and right wing opinion clearly wants their constituents to believe that it is something that it is not.  We are certainly technically competent to provide care.

The political right has elaborate rhetoric to cover the flawed ethics and the balance tipped in favor of corporations rather than people.  That keeps Americans from getting to the same level of performance as the other, less expensive systems in the world.  That includes the National Health Service in the UK as evidenced by the life expectancy graph at the top of this post.


George Dawson, MD, DFAPA




References:

1:  Melanie Phillips.  Why America Got the Charlie Gard Tragedy So Wrong, July 29, 2017.  http://www.melaniephillips.com

2:  On The Media. July 27, 2017. WNYC studios - The Charlie Gard story is near the end of this podcast.  

3:  Lori Robertson.  Dying from a lack of insurance. The Wire. September 24, 2009.

4:  Truog RD. The United Kingdom Sets Limits on Experimental Treatments: The Case of Charlie Gard. JAMA. 2017 Jul 20. doi: 10.1001/jama.2017.10410. PMID: 28727879

5:   Penny Young Nance.  Charlie Gard: Why his struggle may soon be ours.  Fox News Health. July 10, 2017

Supplementary:

MITOCHONDRIAL DNA DEPLETION SYNDROME 9 (ENCEPHALOMYOPATHIC TYPE WITH METHYLMALONIC ACIDURIA); MTDPS9

MITOCHONDRIAL DNA DEPLETION SYNDROME 5 (ENCEPHALOMYOPATHIC WITH OR WITHOUT METHYLMALONIC ACIDURIA); MTDPS5

MITOCHONDRIAL DNA DEPLETION SYNDROME 13 (ENCEPHALOMYOPATHIC TYPE); MTDPS13

RIBONUCLEOTIDE REDUCTASE, M2 B; RRM2B