We also asked people if they had any other
comments at the end of the survey, and a quarter of respondents to the English
survey (382 people) took the opportunity to comment. These comments provided
such a wealth of information that it almost needs another article to do them
justice. Again, people used the space for many reasons: to give us a brief life
story; to sound off about doctors and the medical profession, or to praise
them; to tell us what a good or bad time they’d had with side-effects; and to
criticise or praise the survey itself.
Going through the comments, however, a number
of specific themes emerged.
1. Long term survivors. As mentioned
above, only one in six respondents started therapy before 1997. However, we
didn’t ask specifically about date of diagnosis and it’s possible other
respondents had soldiered on without therapy from the early 1990s. A number mentioned being diagnosed in the
1980s; one was now 82 years old. Several mentioned the issue I cited in my own
case, being put off from taking therapy because of the side-effects of the old
regimes: One said: “When I first became sick AZT was the only drug. That coloured
my decision to wait for other treatment.”
Others just felt the survey was not designed
with them in mind:
“I
started therapy in 1993 and many of the questions don’t apply to me, as you did
what the doctors told you and hoped to stay alive”
“I had
to answer ‘no access to treatment’ when you asked why I didn’t start because I
was diagnosed in 1986. There are some of us still around you know!”
2. Doctor
and patient. Many cited a specific consultant or healthcare worker who had
helped them, and were full of praise: “I have a great working relationship with
my doctor and his team. I’m in two clinical trials, the doctors talk to each
other and I feel very well informed,” said one. Another found nurses rather
than doctors to be more helpful: “The nursing staff have been much more helpful
and informative than the doctor. I do not understand what the doctor has said
so ask the nurse after seeing the doctor.”
A number of patients, however, mentioned that
the way the NHS worked made it difficult to maintain relationships with valued
healthcare workers:
“I had
an excellent consultant who knew everything about me but she was in a temporary
post and everyone in the clinic was shocked when she was not employed
permanently. This made me lose confidence in my clinic”
“My
infectious diseases doctor only wants to concentrate on HIV. I have high
lipids, blood pressure, depression, unexplained back pain and he expects my GP
to monitor them. Too many doctors, too many co-pays, too many things to track”
(US patient)
3. Side-effects.
As mentioned above, this was already a major concern, and a number of
patients wanted to expand on this theme further:
“I am a
nurse and expected to be able to handle a lot of my side effects but it scared
me when the drugs made me feel out of control. No health professional said it
would be that bad.”
“Despite
the success of HAART the stigma of LD [lipodystrophy] has a devastating effect.
Appearance and its psychology could be better handled in the overall literature”
“I am
very scared of the side-effects especially this body-changing lipoatrophy” (recent
starter)
4. Disclosure,
stigma and isolation. Stigma was specifically mentioned by a few people,
and they had mixed feelings about whether taking treatment might make this
worse rather than better. “Taking meds feels like a rubber stamp on my
diagnosis; once I say I am taking ARVs[antiretrovirals]
then I have disclosed my status,” said one. But another said, “With the drugs,
people cannot see a difference between me and the general population. It
lessens stigma and encourages people to get tested.” A number mentioned they
were living in extremely isolated conditions. Two, for instance, were in rural
towns in Spain and one in a
small town in northern Iceland.
Others bemoaned the lack of HIV-specific social groups. For others, the
isolation was self-imposed: “I think there are long term issues of trust that
have never gone away. I am extremely secretive of my diagnosis.”
5. Access
and cost. As we mentioned above, respondents mentioned struggling to secure
medications, not only in the countries we would identify as being
resource-limited, but also in some ‘rich’ countries:
“I wish
the WHO could make it a law that people must be started at 350. I’m still not
on treatment here in Africa having been
diagnosed with HIV and TB for 13 years and seeking ARVs for ten.”
“I
recently lost my job and my Atripla co-payment [the amount a health insurance
company asks a patient to contribute to prescription charges] is over $300 a
month. I am worried sick about this” (US patient).
6. Mental
health. People wanted specifically to mention that emotions also swayed
treatment decisions. “You did not list depression as a reason for not staying
on meds,” said one. Another said: “One thing you didn’t mention that could
delay treatment was fear. I waited almost 5 years to tell anyone or seek
treatment: I had zero T-cells.”
Another talked starkly about not knowing if
they wanted to live at all: “No question allowed for the patient’s
decision-making to be influenced by a lack of desire to live a longer life as
HIV positive. This was my own reason for initially refusing treatment.” Another
had triumphed over grief, however: “Taking meds is my way of saying I want to
live and not give up, even though my partner of 25 years has passed away.”