Treatment Preparation and Support: Launch of JACQUES Initiative

Overview: JACQUES Initiative Provides Treatment Support

Since its official launch this spring, the JACQUES Initiative national pilot program has enrolled 60-plus HIV patients who readily admit they'd like help taking their medication, half opting for the most intensive one-on-one support in the form of direct observation therapy.

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

Close to 400 more have attended educational workshops designed to help them better understand their disease, the treatment options available and why it's so critically important to take their drugs without fail.

A team of IHV medical providers with the community designed the JACQUES Initiative knowing drug resistance to HIV is escalating -- a problem compounded by often hard-to-follow medication regimes of multiple drugs taken at precise times daily - but even they couldn't have anticipated patient response to the program.

Photo: Derek Spencer, N.P.
Derek Spencer, N.P.
Oversees the National Pilot Program

 

"It's been nothing short of phenomenal," says Derek Spencer, N.P., who oversees the national pilot that within three short months already needs more staff to accommodate demand.

Built around the philosophy that it's difficult for anyone to remember to take any medication 95% of the time, the program pairs HIV patients with healthcare providers in the clinic or with family, friends or other HIV patients who've been successful at managing a rigorous treatment plan.

What surprises IHV staff most is that patients have overwhelmingly opted to come into the clinics to have professional healthcare providers oversee them take their medication.

When the JACQUES Initiative was first proposed, "direct observation" was viewed as perhaps too intimidating. IHV staff expected far more patients to prefer the comfort of having someone in the community, friends and family provide daily encouragement and "supportive therapy" through phone calls, reminders to take medications and other assistance with their treatment plan.

Instead, patients pop into the IHV clinic at 725 W. Lombard as often as daily - and weekends - to take medicine, meet and talk personally with a team of healthcare professionals.

It's the makeup of that team, insiders say, and availability that makes the JACQUES Initiative so successful. And so appealing to the population it serves.

So far, 10 key personnel include not only Spencer, the executive director who manages team efforts, but two community outreach coordinators, a treatment educator, two treatment coaches, a pharmacist, nurse, social worker and soon an addictions counselor.

 
Photo: IHV Institute
IHV Institute
725 W. Lombard St.
Baltimore, MD 21201

Most have had direct contact with HIV, either as a patient themselves, someone they know or through professional experience.

With as many as 50 percent of HIV patients failing therapy within the first two years - and their odds of long-term success quickly and sharply diminished - the Institute modeled a direct observation program similar to that successfully used for tuberculosis patients. And they added two once-a-month workshops, entitled HIV 101 and Life Skills Training, offered during day and evening hours to accommodate patients and families to provide a firmer foundation on which to build successful patient care.

Data for the first three months since the launch of the JACQUES Initiative show a total of 254 visits scheduled for direct observation, only four were missed -- a 98 percent show rate.

And, not only have patients quickly enrolled, but health care providers and community based organizations outside the IHV already have made inquiries to expand it further to serve the city of Baltimore, the adolescent population and the prison population.

Part-time staffers have become full-time staff and administrative help is being added.

"We're clearly still in an expansion mode and already we're seeing the positive results of having this pilot program in place." - Derek Spencer, N.P.

Enrollment has been spurred by word of mouth from healthcare providers to patient or, more often the case, from patient to patient.

"With this program, we are seeing patients becoming actively engaged in their care," Spencer adds. "And that, quite frankly, is a secret in long-term patient success. We also have made a very purposeful effort to educate healthcare providers within our system and then to go out into the community to groups like STAR to provide opportunities to patients throughout the Baltimore area."

Named in honor of a patient advocate who espoused education, research and informed decision making, the JACQUES Initiative extends beyond monitoring prescription medication to include drug addiction counseling, help with housing, insurance, job search training and the like.

"It's more comprehensive, because HIV patients are juggling not only a complicated drug regimen but an assortment of everyday challenges that must be factored into the equation for long-term success," says Dr. Anthony Amoroso, M.D., who was instrumental in the development of the treatment support structure proposed by Dr. Robert Redfield, Director of the IHV's Clinical Care and Research Division, and designed to address the issue of increasing drug resistance, not only in patients on therapy but naïve to therapy.

"We knew direct observation therapy worked," Amoroso says. The educational component he compares to the management of diabetes. "Nobody gets put on insulin without education." And initial meetings with parties outside the Institute were encouraging. "There was a lot of community excitement."

But still, implementation of the JACQUES Initiative, from initial conception three years ago to actual inception, took longer than anyone imagined.

Potential funders, ironically enough, were concerned that the program would be too institutionally-based.

 
Photo: Dr, Anthony Amoroso
Anthony Amoroso, M.D.
Dr. Amoroso was instrumental in the development of the treatment support structure proposed by Dr. Robert Redfield, Director of the IHV's Clinical Care and Research Division, and designed to address the issue of increasing drug resistance.

The Abell Foundation in 2002 awarded the IHV $400,000 to kick off the program and today, with additional funding from the Maryland AIDS Administration, the JACQUES Initiative is open to all HIV patients who are newly diagnosed and just beginning treatment, regardless of where
they receive care.

"There are 18 different medications," Amoroso adds. "But not 18 different ways we can treat. Education has given patients the realization," he says, "that they have one really good shot at it. They don't get a second, third or fourth shot necessarily. Your first shot is the most important."

As good as a 95 percent compliance rate - taking all medications exactly as prescribed without fail, for example - results in a 20 percent failure rate. And if you've failed once, chances of subsequent failure on an alternate regimen are likely.

The JACQUES Initiative provides a new forum in which to get that message across to patients who may not understand the critical importance of properly taking their medications. Not all of those who sign up for classes actually attend, but of those who do, all have opted to participate in the treatment support program.


University of Maryland Biotechnology InstituteUMBIUniversity of Maryland The Institute of Human Virology
725 West Lombard Street
Baltimore, Maryland 21201 USA
Office: 410-706-8614 Fax: 410-706-1952