Do-it-yourself disease
Nicholas von Hoffman
Washington C ixteen-month-old Candy Thomas has a L./new liver, thanks to Ronald Reagan. During one of his recent weekly Saturday afternoon radio chats, the President had made a pitch for one of the right size and tissue type for the baby daughter of a White House electrician.
Tearful television pleas for organs of one kind or another for stricken children have become, if not common, at least not rare on the American airwaves. A pattern has developed to the story as it unfolds on our news programmes. There is the plea by the parent, followed by several days in which grave-voiced news readers tell us no liver has been found; then there is the discovery of a liver, accompanied by pictures of the afflicted tot being lifted on board preferably a helicopter because it is more dramatic, but at least a private aeroplane to be flown to its organ-to-be. Sometimes it is medical technicians lifting the organ on board the plane to be flown to the tot. Mark you, we are not treated to a sight of the liver or kidney au nature!, but of white- smocked persons pushing a gurney across a tarmac. On top of the gurney the viewer can see a towel-wrapped box of some kind, out of which there is much tubing. Very high sci and state of the art.
A second, parallel story always accom- panies the first. This narrates the money- raising efforts by friends, neighbours and the family to collect the 100,000 or more dollars needed to pay for the new organ. We are treated to short bites of nice, middle-class people going door to door beg- ging, or perhaps staging a barbecue or raf- fle to get the scratch up for little Julie's new spleen. Often, when this part of the story is aired, we are told about the case of so and so who died because the money was not there to pay for his heart transplant. After the new organ is implanted in the old per- son, the story, more often than not, drib- bles off the air. If the patient croaks quick- ly, there are conspicuous accounts, but if he lingers and dies weeks later, it does not get much airplay.
Of late, angry people, believing that the loved ones are dying for lack of medical at- tention money can buy, have been pursuing the health insurance companies who pay the medical bills for most Americans. The in- surance people are unkind enough to point out that this organ-swapping business is highly experimental and such a high pro- portion of the recipients die that it demands healthy draughts of optimism to call the procedure a medical treatment in the usual sense.
In most other democracies such contor- tions and controversies would not be. Elsewhere providing treatments, matching donors and recipients from one part of a nation with another, all would be a public responsibility, but not in the United States where voluntarism is not a slogan that Ronald Reagan made up, This rushing around, this money-raising, this taking care of the difficulty privately is an ingrained part of American culture. Even in life and death matters like these, Americans, who can grow tiresome lecturing on the sanctity of human life, shrink back from letting government take over the responsibility.
But this is also a marketplace culture, a merchandising society. Put the two elements together and you get what we have here — an atmosphere filled with eleemosynary pitchmen. Every disease, every human failure has an organisation consecrated to its amelioration, if not eradication, and every organisation cries for alms and support from billboard and TV screen.
Almost every organ has its own tax- exempt organisation trying to raise money for further research and treatment. Lungs, hearts, livers and every disease have their organised constituencies. Birth defects, cancer, retidoss pigmontosa, muscular dystrophy, cerebral palsy, nephritis. Cer- tain diseases are championed by certain minority groups, tay sacks by Jews, sickle cell anaemia by blacks.
The homosexualists have gone barmy over AIDS. They are staging parades, demanding money be apportioned for research for the cure of their disease. A few days ago the Governor of New York signed a Bill consigning five million dollars to this noble work. This is a disease, we remind ourselves, which to date has struck something like a mere 2,000 people and claimed the lives of perhaps 700 victims. In a nation of 230 million it ranks, as a public health problem, above the hangnail but not very far above it.
If you have ever wondered why Americans have cultivated their morbid devotion to staying healthy, one reason is that they live in a society soggy with worry and frantic with activity about one disease after another. When the radio is not pit- ching the Americans to send money to eradicate this or that physiological woe, it is instructing him on the five warning signs for cancer, the three telltale symptoms of heart attack or how to avoid shin splints from jogging. Voluntarism and the national faith in individualism combine to pound one lesson home — medically, as well as economically, we are responsible for ourselves. It's our job to save for old age and it's our job to work at keeping healthy• So we are adjured to run, to refrain from smoking, to learn the 'Heimlich Manoeuvre' of freeing food stuck in other people's windpipes, to CPR, which any real American can tell you means cardiac pulmonary resuscitation.
Americans enjoy their voluntarism or they would not have put up with comedian Jerry Lewis for a generation. It has been that long that this repulsively self- advertising person has done his annual 24 hour telethon on behalf of the victims of cerebral palsy, or 'my kids,' as he calls children unlucky enough to have the disability, and this dismaying vulgarian for their champion.
In addition to telethons for arteriosclerosis, we have marathons, dance- a-thons for the hearing impaired (deaf) and olfactorily disabled (i.e. persons able to stink but not to smell). Society reporters routinely ask debutantes, 'Have you picked your disease yet?', and the Kennedys ap- pear to be hoping they can return to the White House on the backs of the 'intellec- tually challenged', the new euphemism for cretinism. The Kennedys thought up and have sponsored the 'special Olympics', that is, games for the physically challenged. In- deed, thanks to this indefatigable clan, the word 'special' has taken on a second mean- ing. When somebody calls you special these days on this side of the Atlantic, you don't know if you're being told you are wonder- ful or if you are being called a moron. If to choose truly is to govern, then voluntarism as we practice it here is a form of popular sovereignty. Instead of having a Health ministry choosing where to put money and talent according to sonic rank- ing of urgency and scientific opportunity, we work through a hodge-Podgical denseness of voluntary groups. It may be less rational but it is seemingly more satisfy- ing. Whether it works less well or better than others is probably a question of taste. But since the voluntarist ideal protrudes in- to every aspect of public policy. it gives life here noise, colour and unpredictability, characteristics which confer even greater longevity than aerobics.
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