Rare diseases: Lost connections and hidden contradictions

PATRICE GREANVILLE

The tragedy of antisocial priorities

Last Sunday* I watched with interest and great empathy a CBS Sunday Morning story about rare diseases.  CBS Sunday Morning is a rather benign venue for American television journalism, of the urbane liberal variety, a consciously elegant show announced by the sound of its opening musical signature, Gottfried Reiche’s Abblasen, a trumpet fanfare played to perfection by Wynston Marsalis.* As such, Sunday Morning eschews hard politics and gives only cursory attention, usually no more than a headline, to the vicious lies, especially foreign policy lies, that typify the normal fare of CBS and her sisters in the Western media disinformation machine.

Urbanity however does not mean truthfulness, nor for that matter that suddenly, despite Sunday Morning’s veneer of serious journalism, the Tiffany network has found its way to news reporting in its fuller social context. In this case, however, we must admit, the sins are of the lesser category, journalistic voids probably caused by longstanding habits and the deeply-ingrained American tendency to always forget the [capitalist] systemic roots of human tragedies. This is further aggravated by the misguided notion that “polite interviews” and “nonpolitical topics” should never dig into “unpleasant corners.” The latter approach of course contributes powerfully to obliterating a deeper understanding of the issues besetting society.

The curse (and denied promise) of rare diseases

It’s hardly surprising, therefore, that periodic calls for the funding of research for rare diseases are met with a firm “NO”, the argument invariably being that there are no discretionary funds for diseases afflicting a tiny fraction of humanity while far more common diseases, afflicting tens of millions of people, are still inadequately funded.

The problem with this ostensibly reasonable argument is that it is bogus and self-serving. Officialdom lies. The truth is that there is money, ample amounts, loads of money, to fund rare and common diseases. What is missing is both the will and the leadership to make this a reality. What America and the world desperately need is to rid themselves of the artificial straightjacket imposed on its social policies and social matrix by corporate power and the rule of the 0.00001%.

Indeed, those who defend the notion that there is no public money to properly underwrite medical research at all levels for all diseases necessitating it (with no need for the much admired “voluntarism” and endless tin-cup charity campaigning so endlessly trumpeted by the media) have some tough explaining to do. It should be obvious to any decent and well informed person that we live in a regime of grotesquely deformed and even criminal priorities. It is fairly easy to see that if literally obscene amounts of money, in the trillions, were not constantly funneled into criminal enterprises (more on this below) there would be more than enough money to pay for all this badly needed research AND still fund a multitude of other legitimate social needs, from a much delayed infrastructural reconstruction of the United States (a long neglected tonic for the economy), to an outright cancellation of student debt, a robust bolstering of the social safety net (including unemployment benefits), and the future underwriting of college costs to all deserving Americans. That, for starters.

Unfortunately, as many of us are well aware, our reality—our unnecessary social reality— is much different. We live in a society of rampant chicanery and artificial scarcity buttressed by a pervasive machine of ideological conformity favoring the exquisitely privileged few. The proof is literally everywhere, and can be found not only in alternative sources like this one, but even on many mainstream media which cannot afford to negate the totality of this monstrous malfeasance, lest they lose the last shred of credibility.

The examples of upper class deformation of policy can be found throughout our history, it’s a world problem, actually, but in America the audacity of the ruling orders has increased exponentially since the enthronement of finance capital and the “Reagan (counter) Revolution”.

Thus, while highly-placed voices sternly warn about the lack of funds for totally legitimate projects, the ruling elites have no trouble finding and pouring gigantic sums into huge disasters whose economic cost is as vast as their criminal content. The following sampler are eloquent. We will focus primarily on the financial costs.

ITEM: AFGHANISTAN WAR [Dateline: From 1970s onward] The US first intervened in earnest in Afghanistan in the late 1970s, under the Carter administration. The object was to overthrow a progressive government and “give the Soviets their own Vietnam.” The war, which continues to this date, has spawned a Jihadist terror network, morphed into al-Qaeda and later transmogrified into ISIS. Cost: One trillion USD, and counting.

ITEM: IRAQ WAR [Dateline From 1990s onward, with official beginning in 2003]. Also launched by the US government and accomplices in Europe and elsewhere under false pretexts, by itself a war crime under international codes and the war crimes statutes we implemented during the Nuremberg Nazi trials. Cost: 1.7 trillion USD (widely regarded as a gross underestimate, as the US government and its labyrinth of intel and military agencies have numerous secret accounts).

ITEM: OBAMA RESCUES THE BANKSTERS The 2008 financial crisis is perhaps the most glaring demonstration that the ruling cliques have plenty of public money at their disposal, and that they can produce mind-boggling sums in a New York minute when their interests are in play. In the wake of the US-triggered global economic implosion, as the country and the world awaited the Obama administration to take severe measures against the bankster class, he characteristically proceeded to do the opposite.  In short order, Obama and his duopoly accomplices shoveled trillions of dollars into the coffers of the perps, put prominent banksters at the helm of the “recovery effort” for the mess they had created, and let millions of regular people founder in an ocean of sudden, entirely avoidable, financial disintegration. In 2010, PBS filed the following report:

The true cost of the bank bailout

September 3, 2010

We all know about TARP, the Troubled Asset Relief Program, which spent $700 billion in taxpayers’ money to bail out banks after the financial crisis. That money was scrutinized by Congress and the media.

But it turns out that that $700 billion is just a small part of a much larger pool of money that has gone into propping up our nation’s financial system. And most of that taxpayer money hasn’t had much public scrutiny at all.

According to a team at Bloomberg News, at one point last year the U.S. had lent, spent or guaranteed as much as $12.8 trillion to rescue the economy. The Bloomberg reporters have been following that money. Alison Stewart spoke with one, Bob Ivry, to talk about the true cost to the taxpayer of the Wall Street bailout.

Thus, the total cost for this catastrophe can be reliably assumed to be between USD $13 and 18 trillion—that’s 18,000 billions. What’s more, a similar, perhaps bigger, disaster is looming over us since the politicians never moved to contain or criminalize the Wall Street shenanigans that triggered the economic collapse in 2008, or reinstate the Glass–Steagall Act of 1933, conveniently dismantled by Bill Clinton. (PBS.org)

ITEM: THE PENTAGON MISPLACES SEVERAL TRILLION DOLLARS (AND THE MEDIA BARELY NOTICE). Yea, that’s trillion with a “T”. And the things that could be done with that kind of money challenge the imagination. To the above mentioned list of obvious and irrefutable necessities. We could throw in this one (for animal and environmental defenders): With that klnd of money we could stop the poaching of severely endangered species all over the world, starting with war-torn, ruthlessly exploited Africa, clean up large segments of the planet from human soilage, and still have dollars left to do plenty of other nice things. Read about this outrage in Pentagon waste in Dave Lindorff’s filing, The Dept. of Permanent Wars loses $6.5 trillion and the media yawn…

Worst of all is that although thousands of billions of dollars wasted or disappeared (technically “unaccountable”) represent a huge lost opportunity to humanity, we should also be grateful that the bloated Pentagon is so darn inefficient, for this in a very direct way thwarts the evil mandate given the Pentagon by the civilian mafia bent on world domination. Indeed, among the many Orwellianisms that circulate these days, few can match the inherent deceit in US “Department of Defense.”

[dropcap]C[/dropcap]onvinced? You should be by now.

This system-induced myopia and neglected scandal of social priorities costs humanity dearly. Not only in its moral dimension, but in the wasted opportunity of sheer relief from dreadful scourges that could have been controlled or eliminated decades ago. For as many have pointed out, pure research is essential to lay the foundations for great advances in all sciences. Fact is, rare disease research often uncovers the path to diseases that afflict us all.

W. Marsalis does the CBS trumpet theme.

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ABOUT THE AUTHOR

Patrice Greanville is The Greanville Post's editor in chief.

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