Medication Education: Launch of JACQUES Initiative

Model Patient: A Spotlight on Kathy Bennett, Treatment Coach

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.

 
JACQUES Initiative
National Pilot Program
Model Patient: Kathy Bennett
The JACQUES Team
"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.

"I couldn't sleep," Bennett recalls, and she 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.

 
Photo: Kathy Bennett
Kathy Bennett

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.

"God needed some strong soldiers on the forefront, and
I'm a soldier on a mission." -
Kathy Bennett

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."


University of Maryland Biotechnology InstituteUniversity of Maryland The Institute of Human Virology
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