Anthony
asked me to speak on this year’s World AIDS Day theme,
'Focus, Partner, Achieve: An
AIDS-free Generation.'
I will be looking closely at
these words in this speech. I challenge you to look closely at your own
definitions and ask yourself, Where do I fit into this theme?
Focus is the first word, so
when I sat down to write this speech I translated the word focus into mindful.
I sat down and took some time to be Mindful, many people think it’s an overused
word, what do you think? I like the word, I also like the phrase “to take
Notice”. So specifically to Maui here is what I noticed.
In order to achieve an
AIDS-free Gen
What must we notice here on
Maui?:
We must acknowledge that
this is a small island, positive or negative there is little anonymity, the
coconut wireless is faster than the internet.
In small communities
(especially in some ethnic communities) there is still a great fear surrounding
HIV
Fear of being found out -
because it is still considered shameful to be infected with HIV.
This fear stops people from
coming in to be tested.
This fear stops people who
are HIV+ from linking to the medical help they need.
What role do you play in
addressing this fear?
Because it is only when this
fear is addressed can we hope to achieve an AIDS-free generation. We have
all had some sort of our own fear surrounding HIV,
take time to be mindful, to
remember what those fears were like and what helped you overcome them.
Your remembering may change a person’s life.
Let’s be mindful that when
someone who is HIV+ is linked to medical care – they not only help themselves –
they help the community.
An HIV+ person who has an
undetectable viral load and a healthy CD4 count, they have a 96% less chance of
passing the virus on to another person. This is a fantastic statistic!
Being on medication is an
integral part of achieving an AIDS-free generation.
So who do we partner with in
order to achieve this goal?
We (meaning professionals,
families and friends – all of us) All of us have to create a safe space, a
confidential place that fosters deep listening and respect.
Now how do we acknowledge
the fears, validate an individual’s reality and build a relationship of trust
before diving in with medication agendas and CDC guidelines? Most every
worker in the field, every partner of an HIV+ individual, every parent of and
HIV+ individual knows that if someone is not ready to take their medication –
they will not adhere and without adherence, a person is at risk for resistance.
We must listen deeply to
see: what is at the root of their fear?
Is it Misinformation? a
misunderstanding of what living with this virus means (and I do mean living –
versus what they might believe is dying), Is it judgment? – self judgment as
well as judgment from others,
Do their fears revolve
around Proprietary needs? - a homeless individual is not going to make
meds a priority – they are going to make shelter a priority. (If we think
developmentally – as in Maslow’s Hierarchy – survival needs come first, we must
meet individuals at their particular need– partner with those who can assist,
from a friend’s sofa, to a homeless shelter, to a housing program or in cases
of domestic violence Women Helping Women.
Another survival issues is
Hunger, someone who is searching to keep themselves and their family fed
are they thinking about
spending money on medication? – even if it’s just a copay? No of course
not.
We must partner together . .
. with the Food Bank, donations to keep our food pantry going, cooking a meal
for someone in need, connecting individuals to government assistance.
What about the homeless and
hungry HIV- individual? Do you think they are putting themselves at risk
in order to obtain shelter for the night or even just a meal? What is their
focus?
It is also survival.
To achieve an AIDS-free
generation it will take a village to address these needs (even if some of us
look like the Village People – for those of you old enough to remember them)
It will take family,
friends, volunteers, organizations and the government.
Another area to be mindful
of are mental health issues
– someone who is unable to
address their anxiety or depression either through medication, counseling or
both – how likely are they to stay on their HIV medication?
Let alone that the
individual may see their mental health diagnosis as yet another stigma.
It is imperative that we
partner, partner with mental health professionals and partner with the
individual who attempting to cope.
We must listen to our friends,
our clients, to see if their therapist is a good fit, to see if the meds they
are taking are making a difference for the better, not increasing mental health
issues. Remember, there is no absolute science to prescribing meds, it is often
a trial of a few meds before the right medication and dosage is achieved.
– we as a community need to
be there helping, through direct observation and kind feedback – along with a
listening heart.
If want an AIDS-free
generation we must be willing to address mental health issues.
An individual who is looking
for their next high - whether it’s addiction or just substance use,
Do you think this gets in
the way of making HIV adherence a priority? Of course it does. Do you
think substances interfere with an individual’s judgment? Of course they do.
Poz or Neg individuals.
Often times while high, risk
of transmitting the virus increases because negotiating safer practices is not
a priority with dulled senses. To achieve an AIDS free generation we need the
courage – all of us, not just the professionals, to address these concerns with
those we care about and to address them with a nonjudgmental and compassionate
heart – truthfully.
We also need to partner with
substance abuse programs to find the fit which will allow the person in need to
achieve sobriety. Whether outpatient like AA or NA or programs like Aloha
House of Malama Recovery.
If we want an AIDS free
generation then we are all going to need to step it up
Now imagine if your friend
had a combination of these factors – this is not a task left to one of
us. It is a task for all of us. To stand together and support.
We need to embrace what is
working . . . and acknowledge what isn’t!
Why is it that in young MSM
in the US between the ages of 13 and 24 there has been a 300% increase in HIV?
I hope this statistic shocks and saddens you as much as it does me. And that it
will move us into action.
Why is it that 70% of Asian
Americans have never tested? How do we reach this population?
2/3 of Native Hawaiian Pacific Islanders have never
tested. How do we change that?
We need to ask ourselves –
“What role do “I” play in changing these statistics in order to achieve an AIDS
free generation?
Again – what does it take to
clear preconceived judgments and notice the needs of the community. We must be
culturally aware. An AIDS-free generation will not be achieved if we expect a
culture different from ours to accept what we have to offer
if we do not honor and
accept what they have to offer. This takes deep listening. This
takes noticing. It takes respect.
It means working with youth
– listening to youth. Listening to the needs of the various ethnic communities
on Maui. It means Partnering with other organizations like Hui No Ke Ola
Pono and grantors like Maui County
As for Prevention and
Education – we have to meet the individual where they are. What are they
interested in?
Abstinence only?
Condoms?
Med adherence?
PrEP?
A combo of these?
When we talk to individuals,
do we have our foot in one of these camps and not another? We need to take a
look at this before we address prevention needs with an individual. We
need to notice our own fears and biases.
Remember, in prevention, The
goal is to be heard, (I repeat) not vilify or judge. In order to achieve
an AIDS free generation we must meet individuals openly and honestly about the
choices available and allow these individuals to choose the best risk-reduction
that fits their worldview. And in order to do that, we may need to push our
comfort edge, suspend judgment and increase our knowledge base.
Why are we still using
stigmatizing language? You hear it from stranger, from friends – you may even
have used it yourself.
“I’m clean you be too” –
this phrase, this word “clean” implies an HIV+ person is somehow dirty.
This kind of language
inhibits trust, reduces conversation between HIV+ and negative individuals,
increases stigma and decreases disclosure. In order to achieve an AIDS
free generation we must “notice, pay attention” to our words and the words our friends
use and push our boundaries and confront this language head on! Let’s not
inhibit conversation, let’s encourage it.
The newest roadblock I’ve
seen comes from the very community that has fought judgment, stigma and shame
for generations. The Gay Male. What is being judged? Of all things risk
reduction. People in the community who choose PrEP as a means of lowering
risk! They are not “Truvada Whores” – what a vulgar expression for
someone who is taking responsibility for their sexual health. If we want an
AIDS free generation we must be mindful of our language and our judgments.
Especially since taking PrEP as prescribed decreases HIV transmission 99+% And
this study was done with magnetic partners where the HIV+ partners were not on
meds and had high viral loads! The HIV- partner who took PrEP and did not
contract HIV! Why would we judge this? We need to stop – especially in light of
the 300% increase in HIV cases in young MSM. And in light of the fact that 47%
of gay men report they do not use condoms consistently. We need to notice this
judgment in our language and have the courage to confront it.
We need doctors. How
does one achieve an AIDS free community without doctors? This has been a
changing landscape on Maui. Yet by paying attention we can do everything in our
power to advocate and plan for HIV docs t be here on Maui. Supporting our
partners like Malama I Ke Ola, Mango Medical, Kaiser Permanente and Spencer
Clinic.
Ideal? No. But a work in
progress These partners are crucial in achieving an AIDS free generation.
The national average is that
only about 25% of HIV+ individuals are linked to and in care. Maui is
double this and I am proud of our community. But this still leaves 50%
out of care. To achieve an AIDS free generation we must focus on these
individuals and (what is often) their non HIV needs.
Finally, while not specific
to Maui, we need to be invested. Where would we be without financial
investment from individuals and corporation? Not only locally but world
wide.
The all important funding
that goes to research?
Meds have greatly improved
over the years, studies continue to be conducted for a vaccine
and more and more
researchers and scientist are actually hopeful for a cure.
An AIDS-free generation
relies on these researchers, scientists and we rely on their partnership as
well.
Finally I hope you take with
you that this year’s WAD theme
'Focus, Partner, Achieve: An
AIDS-free Generation. Has meaning for you.
It is my hope you will take
this phrase with you and contemplate your role in it. Be mindful of its
meaning.
We owe that to every
individual who has passed on, gone before us in this fight.
Mahalo for all you are.
John
