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No single person personifies the JACQUES Initiative more than Kathy
Bennett.
There was a time when this Baltimore native felt doomed by her
diagnosis of HIV.
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"For a whole year, I stayed in my room waiting to die. It felt like
it was the end of the world. I had young children and I was worried about
their upbringing," she recalls."I isolated myself for a whole
year before I told anyone. It was the worst thing I could have done, but
at the time a lot of people were dying. Rapidly."
She also struggled with treatment, first remembering to take the medication
and then dealing with side effects that included headaches, vomiting,
diarrhea, fatigue, nausea.
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suffered from depression. She'd stop taking the drugs to alleviate
the symptoms, but relief was always temporary. "I had no choice.
I had to deal with the side effects to treat the HIV."
Over the years, HIV medication regimes have improved. New drugs
have been approved.
Patients have more options and, with time, physicians can tailor
a treatment plan that works for each individual.
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Kathy Bennett
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Now - more than a decade later - Bennett sticks to a strict medication
regimen, actively touts the benefits of drug adherence and is living proof
that, with determination and commitment, HIV patients can successfully
manage a grueling assortment of pills.
"I do not walk around with HIV in my spirit," Bennett says
now. "I carry a message of hope for people living with HIV."
The JACQUES Initiative, a new program that also provides just that, was
developed by a team of IHV physicians who saw an escalating problem of
drug resistance and thought a new approach was needed to boost the rate
of long-term patient success. They modeled the JACQUES Initiative, which
incorporates intensive HIV treatment training and support, after one that
had already proved successful with tuberculosis.
Bennett, an active patient advocate who also has founded a support group
for patients in the Sandtown community, heard about the JACQUES Initiative
- which was named in honor of friend and mentor Joe Jacques - and immediately
became one of its first supporters.
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"God needed some strong soldiers on the
forefront, and
I'm a soldier on a mission." - Kathy Bennett
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She has been a "treatment coach" since the program's official
launch earlier this year and meets as often as daily with patients who
say that want help with their treatment regimens. She sometimes watches
them take their medications, offers reminders, tracks their daily progress
and helps them deal with day-to-day issues.
"I just try to educate them," she says.
She admits she's had to learn the hard way. But for years, she's been
determined to help others along the way.
Despite the initial shock, surprise, fear and pain of the discovery that
she was HIV positive, Bennett mustered the strength and courage to deal
positively with her diagnosis.
"My desire to live was through my grandchild who was two years old
at the time," Bennett recalls. "I'd come home to hugs and kisses
and I told myself I'd live for this baby."
The reasons to put the fear aside will be different for each patient
with HIV.
"We have a long way to go in the area of HIV/AIDS," Bennett
continues, "but we've come a long way."
Bennett, who once contemplated suicide in the midst of her own diagnosis
and subsequent Hepatitis C co-infection, today is a model for patient
success. And a source of inspiration.
"I just live with what I'm dealt and today I live a very good life.
My CD4 count last year was too low to enumerate, but one year later it
is now 325," she says. "Because of me taking my meds and taking
my meds well.
"I've also been on pegalated interferon for eight months, which
is a very rough treatment and decided to stop the interferon several times
because of the hair loss, rapid weight loss and flu-like symptoms and
severe depression I experience weekly. But because I was told that my
Hepatitis C viral load is now non-detectable, it's worth sticking it out."
Bennett has admittedly suffered a few knocks along the way, and those
stories this "coach" readily shares -- whenever she thinks it
might benefit someone else.
"I've got my life together," she acknowledges. "I'm living
well. And my patients love me. If they need me to hold their hand, I hold
their hand. We've both lived the same life, though I don't live that way
today. I take meds every day, though, just like they do. It's not easy.
But once you take your meds, that part of day with HIV is over."
Her role as treatment coach -- and cheerleader -- is one Bennett visibly
relishes.
"It's a blessing," she says simply. "I used to be a drug
user. In prison. Missing meds. Today, I work for the JACQUES Initiative.
I've been drug-free for 13 years and I'm living well. And the more I help,"
she says, "the better I feel."
Bennett is particularly concerned about the growing HIV infection rate
among teens and young adults, women and African Americans. There's a tendency
to believe that we're immune to HIV. That it only affects someone else.
But we put ourselves at risk if we inject drugs or practice unsafe sex.
And she's out to spread the word.
What does she hope to see result? Fewer infections, patients doing well,
other success stories carrying the torch as patient advocate and treatment
coach.
"God needed some strong soldiers on the forefront," Bennett
says, "and I'm a soldier on a mission."
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