THE ROLE OF PATIENT VALUE AND PATIENT-CENTRED
CARE IN HEALTH SYSTEMSbecause of it,” he adds. “But for rare diseases, there are few people, little or no training is provided for
advocates, and the media are not as interested. The patient perspective is being ignored and health
systems are making the same mistakes that they made 30 or 40 years ago in services to major non-
communicable disease populations.”
Whether one is living with a condition able to command attention (and, with it, patient-centricity),
however, can be a matter of circumstance. One factor is existing societal attitudes. Dr Morrow
observes, for example, that “children’s diseases are much easier to get attention and resources for than
those of the elderly or mental health.”
Contrasting advocacy histories: AIDS and epilepsy
Just as important is the ability of those with a condition to coalesce in understanding and
communicating what they need. Here, the distinct experiences of those living with HIV/AIDS in the US
and with epilepsy in Italy are instructive.
Mr McColl of AIDS United explains that the circumstances around the appearance of HIV/AIDS in the
US helped galvanise efforts to make health systems listen to patient views.
However, it was frightening: “people were dying at the height of the epidemic, which meant that people
took it seriously. That in itself created a level of activism.” Moreover, that shared danger, the particular
concentration of the disease in the LGBT community, the experience of stigma attached at the time to
both the disease and that community, and even the clear biological marker that provided a definitive
diagnosis all meant that HIV/AIDS “became something of an identity-based condition in a way other
chronic ones have not. There was a basis for people to pull together and create conditions under which
they could identify and tell providers what they needed.”
It also gave them the cohesion to define their identity in a way that underlined their expectation to be
treated as equals. “It started with people-first language,” says Mr McColl, “rather than calling us ‘clients’,
‘patients’, or that grating word ‘victims.’”
This sense of community and self-respect helped foster a successful patient movement and has
kept it together as its needs have changed over the following decades, especially after the arrival of
antiretroviral drugs. Now, issues like providing comprehensive care for individuals treated under the
Ryan White programme, dealing more effectively with common co-morbidities, and even slowing
or stopping transmission through reducing the viral load of the disease to undetectable levels are all
important issues for those living with HIV/AIDS in the US. Mr McColl explains that during this evolution,
the sense of community has allowed “people to say, ‘we have these needs, and here’s how we could
make care more effective.”
By contrast, Ms Sofia, of the Federazione Italiana Epilessie, explains that epilepsy advocacy even now is
typically carried out by doctors rather than those affected by the disease or their families. The clinician-
patient relationship, she adds, “is still very paternalistic”. The contrast between AIDS and epilepsy