Sometimes being an orphan can have deadly consequences. Anorexia is an orphan disease and it kills.
It kills silently and below the radar of politicians and the public, because unless the sufferers are movie stars or entertainment icons, it is not interesting, it has no heart-wrenching stories of small children who will die if they do not receive transplants or expensive medications.
And anorexics do not seek public attention. When their stories reach the public at all, it is brought by others whose focus is the fashion industry, which is criticized for promoting a thin and emaciated body image, but the sufferers from anorexia are ignored.
Anorexia is not an orphan disease because there are so few anorexics. On the contrary — it is estimated that from 0.3 to one per cent of the population suffers from anorexia. That may not sound like much, but in real terms it means that there are about 13,800 anorexics in B.C. alone.
By comparison, according to B.C. government statistics, there are only 11,700 AIDS sufferers in province. Therefore, there are over 2,000 more anorexics in B.C. than people who have AIDS.
AIDS sufferers will no longer die in droves because treatment has been and continues to be funded. By contrast, statistics from St. Paul’s Hospital in Vancouver and elsewhere indicate that anorexia kills about 10 per cent of its sufferers, and there is only one functioning treatment program with eight beds in the province.
That means that more people die of anorexia in B.C. than from AIDS. Anorexics die silently, hidden from public view. Their suffering is ignored because it is not interesting.
It is easy to point the finger at the fashion industry, but as a study from New York’s Columbia University concluded, that is simplistic and it is impossible to establish a direct causal link between anorexia and the body types that are promoted by the fashion industry. The disease is multifactorial: it has many causes and fashion images are only one of them. Genetics seems to be involved, family history, emotional and psychological trauma — the list goes on.
To point the finger at the fashion industry and stop there is to take the easy way out. It’s like pointing to the reason why people acquire AIDS instead of doing something about the people who have AIDS. Thousands of people suffer from anorexia in B.C.; many of these people will die, and most of them will die because the provincial health system has not seen fit to fund treatment programs and to provide beds in keeping with their need.
It is so much cheaper to point fingers than to care for the people who have the disease. But is it ethical? Is it just? Is it caring?
Anorexia is an orphan disease because it is catastrophically underfunded, and has been for years. Is that what one should expect from a health-care system that claims to be just — and that claims to care?
Eike-Henner W. Kluge is a medical ethicist and a professor at the University of Victoria.