AIDS 2014 Bridging Session Thursday July 24, 11am
HIV and Ageing: My Personal Perspective
David Menadue
OPENING SLIDE
Thankyou Peter for that excellent presentation. It is encouraging to people
with HIV that research is continuing in this area and that we understand that
the ageing process many of us are going through is far from what might be
described as "normal".
As a person who has lived with HIV for thirty years and has survived multiple
AIDS-defining illnesses, I have always expected that some of the damage
done to my body in that period of no -- or ineffective -- treatments would live
with me and have repercussions down the track.
And there is no doubt this has happened. I experienced major HIV-related
wasting in the late 1980s -- was it due to a toxic daily dose of AZT or that,
combined with the virus itself? Even when HIV treatments improved in the
mid 1990s, we have been told that even some of that generation of drugs
contributed to further muscle wasting. Despite thousands of hours spent in
the gym since then, little of the muscle mass has come back. I have
experienced mobility problems for many years and started to develop
osteoarthritis fifteen years ago. Last month I had a knee reconstruction
operation and expect I will be keeping my orthopaedic surgeon busy into the
future.
SLIDE ( man with pill)
The burden of illness
Ahh, you might say-- it's normal enough for a 61 year old man to experience
arthritis and need a knee operation. I'm not disputing this and I'm certainly
grateful to still be here. But we have to recognise that anyone who has had
HIV for fifteen or more years (maybe less) has usually had to deal with a
range of chronic complaints, some related to years of untreated or poorly
treated virus and to the inflammatory processes we know still occur within
an HIV-positive person's body, regardless of how well they are treated with
antivirals.
I developed diabetes in 1999 (was it protease inhibitor-related? -- I can't be
sure), developed proteinuria (was it related to Truvada, again we can't be
sure but my doctor took me off it as a precaution to protect my kidneys), an
HIV-related dermatitis that has never left me, a range of dental problems
from a constant dry mouth, and last year was lucky to survive a very
aggressive lymphoma.
I actually feel lucky when compared with long-term survivor friends who
have experienced heart attacks, strokes, acute peripheral neuropathy,
osteoporosis and cognitive impairment.
As was the case with AIDS-defining conditions, it is the burden of illness that
weighs people down. In the 80s and 90s we saw people losing their will to
live because of the number of debilitating and life-threatening illnesses they
had to deal with, often at once. Today the illnesses we are dealing with are
usually not life-threatening, at least not with our privileged first world
medical care, but they sap people's spirit and test the resilience of the best of
us.
No one likes to look old before their time. No one likes to have to live with
sunken cheeks and protruding bellies, which are still side-effects of some HIV
drugs. Plastic surgery interventions might help but you have to keep going
back for more facial injections as the treatments and I guess, the virus, still
try to beat you with the ugly stick.
And I won't even bother going into the side-effects of treatments or the
number of pills we more "complex" people with HIV have to take. I'll just say
that for a while there, few HIV treatments seemed not to have an effect of
giving people diarrhoea. Whenever you would leave the house, you'd plan to
take a change of clothes or at least a map of where public toilets where in
case you had to get there in a rush.
What to do about it?
People like me don't get to still be here by being defeatist. So learning how to
be resilient and to adapt to your situation is often the most important
consideration. Do you have people you can go to for support when the
burden of illness gets you down? Do you feel able to be open with your
doctor when anxiety and depression, understandably, creep into your life?
Are there good HIV-experienced mental health practitioners available to
you?
SLIDE ( Group of doctors/nurses)
Coordination of Care
Having a central doctor to coordinate your HIV and non HIV care is essential.
Currently I see six specialists for different conditions at the Alfred Hospital in
Melbourne. I feel blessed to have my care coordinated by an Infectious
Disease specialist at the hospital because she is able to quickly refer me to
the right specialist when each new problem occurs. And most importantly,
she receives information and results from those consultations soon after I
have had them.
My specialist is an important monitor for the decision-making of other
specialists too. HIV is a complex area with all its drug interactions and
unusual presentations. Specialists are generally not HIV-experienced and I
am comforted to know that an ID specialist is able to review their decisions in
the light of the latest HIV research.
Most people in Victoria have their HIV care coordinated by a general
practitioner and we are fortunate to have some highly skilled and
knowledgeable doctors trained in HIV care. (Even though many of us are
anxious that this may not always be the case.) GPs do not always receive
reports from hospital or private specialists in a timely way. Their care is still
excellent but without a proper e-health system in place, the coordination of
care is probably not as good as it could be.
SLIDE (Man at computer)
HIV Literacy
From the earliest days of HIV, I felt the only way I could keep on top of my
condition was to read and learn as much as I could from the experts. While
my doctors were always my greatest source of information, I needed to take
an active part in my health care. Like it or not, mistakes can be made by
doctors and pharmacists. Knowing what your pills were for, how often to
take them, what the side-effects were, helped reduce my anxiety about my
HIV management considerably.
We need HIV community organisations to continue to help people with their
information needs as they develop complex side-effects related to ageing.
SLIDE (Man with blindfold)
Stigma and Discrimination
When the largest demographic of HIV-positive people in many Western
countries is approaching 50 years of age, there has to be attention paid to
including all people in messages and in service delivery. It's not just about
"health promotion" and "staying well", laudable as those aims are-- it's
about acknowledging that some people are in fact unwell. They need special
efforts made to be included in social and education activities. Older people
with HIV can feel isolated as their looks deteriorate and their disability
becomes obvious. We need to tackle this stigma and can't allow any
discrimination against the sick or elderly to be part of our community
response.
SLIDE (Bingo)
Nursing Care and End of Life
With many people with HIV being relatively well, the demands for acute
hospital care have fortunately reduced. However we know that the more
complex, treatment experienced people like me will take longer to heal, will
be weaker than your average patient because of other complicating
conditions and will not always have the supports at home to look after them.
We know that patients benefit from being in a supportive nursing
environment where discrimination from other patients who might not
understand HIV, is a real possibility.
So there is a need for sub-acute and respite care for people with HIV either
provided by hospitals or in the community. There is much competition for
funds and we often miss out on getting a priority here.
I recently completed an Advanced Care Plan. My close call with a lymphoma
prompted me to do that. I want to be prepared if I need nursing care and
indeed, end of life care. It would be reassuring for me if I knew that facilities
were preparing for taking in HIV-positive patients like me, training their staff
in infection control and not to be frightened by us. That they will be inclusive
in their policies --like giving same sex partners the acknowledgement and
rights they deserve. Fortunately there has been some education and training
work done in this area here. I'm sure there are best practice examples from
around the world where we could learn how to do this well.
In conclusion, I don't know how relevant my story will be to your particular
country and health system. I imagine Carol's story will be quite different and
I look forward to hearing it. I acknowledge that I am still here largely because
of the excellent HIV care I have received in our health system and because
we have a very engaged medical workforce and community sector.
Ageing issues for people with HIV will be around for a long time to come
unless we are lucky enough to get a restorative cure that will undo so much
of the damage people with HIV have experienced. I think that if countries do
not plan for this future they will find this will greatly contribute to poorer
health outcomes for people with HIV and lead to greater mortality.
Thank you.
FINAL SLIDE (Thankyous)