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Highly-active antiretroviral
therapy (HAART) has given HIV-infected patients in wealthy
countries the potential to live for decades after diagnosis.
But among the difficulties associated with this treatment
is that patients must adhere to their prescribed medications—often
on a rigid, daylong, dosing and dietary schedule—with
near-perfect accuracy.
Failure to do so can mean
that their bodies become resistant to the drugs’ effects.
And failure is not uncommon, according to presenters and delegates
at the IAPAC Sessions 2003, sponsored in May by the International
Association of Physicians in AIDS Care. Richard Elion (private
practice, Washington, D.C.), who presented data to assembled
delegates, said that, “HAART has the potential to achieve
close to 100% virologic success, but as things currently stand,
we can tell only about 50% of patients that it will work for
them.” The reason for this, he said, is that patients
fail to adhere to demanding treatment regimens.
But participating physicians
were remarkably frank about their lack of reliable data on
adherence rates, factors that influence adherence, and the
best methods to ensure that patients take their medications.
“We really have no idea what’s going on,” Elion
said.
Nonetheless, Elion and his
co-presenter, Judith Feinberg (University of Cincinnati),
along with session moderator Joseph C. Gathe, Jr. (private
practice, Houston) and the assembled delegates, were able
to reach some consensus on problems that their patients have
in adhering to dosing schedules and on strategies that can
be used to help them in this regard.
Elion shared a personal story
as a way of demonstrating that taking medicines on a regular
schedule is not the simple matter that it might seem. After
accidentally poking himself with a syringe that had been used
on an HIV-infected patient, he was on a HAART regimen for
a month to prevent his own infection. He says he found it
very hard to fit the burden of pill taking into his regular
schedule. He went on to quote a study of healthcare professionals
that found that only 50% of those taking medications to prevent
infection after accidental exposure were able to properly
maintain the regimen for a month.
Several factors that potentially
make adherence difficult for the patients doctors see in their
practices were brought up in discussion. The on-going stigma
associated with HIV infection makes it hard for them to interrupt
social situations for a scheduled dosage, for example. Some
doctors asserted that patients can be emotionally unstable
because they feel guilty about their infection or depression
about their continued illness. Other patients are reluctant
to take HAART medications because of the negative effects
they can have on body shape.
Feinberg asserted, and her
opinion was echoed by delegates, that no particular factor
can be blamed for poor adherence; patients from all different
demographic groups have been very faithful about taking their
regimens or have had a hard time sticking to the schedule.
Feinberg concluded that it is, perhaps, a “matter of
personality. Some people just do what needs to be done. And
if we could bottle that, we’d be in business.”
Another current mode of thought
voiced by delegates, however, pointed to systemic barriers
to good adherence. The high cost of HAART forces many patients
to seek government assistance, help from corporate programs,
or participation in clinical trials that would provide free
medications. Delegate Donna Sweet (University of Kansas) said
that patients, having to deal with “the bureaucracy,
the hassle, the begging, the filling out the forms,”
get discouraged and fail to properly adhere to their prescriptions
for that reason.
Delegates from around the
country saw this situation getting worse as state-level healthcare
funding is cut to make up for budget shortfalls. Despite such
difficulties, delegates agreed that adherence could be improved
through concerted efforts to create a good physician/patient
relationship and rapport.
The most-repeated stratagem
was empowering patients to be part of the clinical process
and to be honest about the difficulties they face. Inform
patients of risks, uncertainties, side effects, and the numbers
and requirements of pills in different regimens. Armed with
this knowledge, they should be a part of the final decision
on what type of treatment is most appropriate.
Even as they agreed with
the importance of this “teamwork” mentality, some
delegates expressed the difficulty of establishing it across
cultural and economic divides, which may make patients feel
mistrust and a sense that they are in a position of relative
weakness. This is a particular problem, they said, because
HIV-infected patients are increasingly minority females while
the majority of physicians remains white and male.
Building on the comments
of delegates, Gathe suggested that the profession as a whole
would do well to solicit and act on feedback from minority
patients about their feelings toward healthcare and their
difficulties in obtaining the treatment that is best for them.
[Editor’s note: Dr. Gathe is himself African American.]
Much of the frustration physicians
discussed seemed to stem from the fact that, in the end, so
much of whether patients adhere well or poorly to their medications
depends on factors outside their control. Adherence takes
place, or fails to take place, in the weeks and months between
office visits, which happen without enough regularity in an
over burdened healthcare system. Giving voice to this sense
of powerlessness, Feinberg said, “You can’t take
their pills for them.”
Mark D. Wagner is Director
of Communications for the International Association of Physicians
in AIDS Care (IAPAC), which is based in Chicago.
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