The stigma lives on

Disease is mankind’s oldest, most intimate companion and greatest
enemy, harvesting more souls throughout history than the combined
deprivations of war, famine and natural disaster.

Until recently, major public health reforms, revolutionary
developments in science, nutrition and medicine, had persuaded us
that this ancient foe was almost vanquished, at least in the
developed world. We were wrong. Many infective micro-organisms
declared their own war; drug-resistant infections are becoming
commonplace, especially in hospitals, where the hospital bug MRSA
yearly kills upwards of 5,000 UK patients. Medicine itself, via
immunosuppressant treatments such as chemotherapy, invites
invasions, while diseases such as tuberculosis, generally
considered a thing of the past, are fighting back. More ominously,
previously unrecognised, often fatal infections are emerging as if
from nowhere; ebola in 1976, HIV/Aids in 1981 and Sars in

Ebola is fast and fearsomely ruthless, dispatching within days some
90 per cent of its victims. Presumed to be confined to sub-Saharan
Africa, the virus emerges periodically out of a hidden reservoir,
which a vastly expensive, 29-year hunt has so far failed to locate.
As with Sars, there is absolutely nothing to prevent Ebola from
boarding an aeroplane and jaunting off on a world tour. HIV/Aids
has already done that. Since being first identified in Los Angeles
and New York in 1981, it has caused 22 million deaths and, along
with malaria and tuberculosis, kills more than 13 million children
and young adults each year. The social and economic implications of
this and other infections are enormous.

Of the 50,000 HIV-infected people identified in Britain since the
epidemic began, 30 per cent have died. Infection among homosexual
men is steadily decreasing while women accounted for 52 per cent of
last year’s new diagnoses. In 2001, non-sexual transmissions were
as follows: 2.5 per cent by injecting drugs, 1.6 per cent mother to
child (since the introduction in 1999 of elective HIV tests for all
pregnant women, vertical transmissions have fallen), 0.5 per cent
via contaminated blood products. By the end of 2003, estimated
infection rates show a 40 per cent increase on 1999 figures and it
is clear that sexual activity remains the primary route of

The presence of a disease, particularly where no certain cure is
readily available, can evoke extreme emotions: in China household
pets are being slaughtered out of the misplaced fear that they
harbour the Sars virus. Diseases also acquire reputations that can
bear no relation to their reality; in the arts, TB is often painted
in romantic colours whereas it is in truth a horrible, degrading

Despite the genuinely impressive efforts of Diana, Princess of
Wales, HIV/Aids remains bedevilled by the worst of stigma –
portrayed as the wages of sin, the self-inflicted consequence of
aberrant lifestyles and sexual practices. Such condemnation also
embraces infected children. Tyddyn Bach near Conwy is one of only
three UK residential centres for HIV/Aids children and families and
exists entirely on charity, hand-to-mouth, fighting a losing battle
with prejudice and public ignorance.

HIV/Aids is stealthy. Symptoms may not arise for many years; thus,
those infected will not seek the treatment that might save more
lives than their own. For every person diagnosed, three may be
unwitting carriers; the disease is not notifiable and therefore,
transmission routes often remain uninvestigated. The welcome
success of combination therapies has meant that it is no longer
defined as a terminal illness; hence little dedicated, ring-fenced
funding exists and some social services departments are forced to
seek help from charity hardship funds to assist their

HIV/Aids continues to make a significant impact, affecting people
of all ages and in every social class. The chief medical officer
determined that it requires, together with hepatitis B & C, “a
dedicated action plan”. Having researched widely for this article,
I can only ask: what “action plan”?

According to the National Assembly for Wales, for example, HIV/Aids
is not a problem of any magnitude in the principality, yet six new
cases were diagnosed in March alone. How do we assist infected
women who want relationships, or who care for infected children,
address the prejudice threatening to drive the disease underground?

Alison Taylor is a novelist, a former senior child care
worker and the winner of the 1996 Community Care Readers’

More from Community Care

Comments are closed.