May 15, 2003
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, being sponsored here today and tomorrow by the International Association of Physicians in AIDS Care.
Richard Elion (Private Practice, Washington DC), who presented data to assembled delegates, said that "HAART has the potential to achieve close to 100 percent virologic success, but as things currently stand, we can tell only about 50 percent 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 percent 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 even more difficult for the patients that delegates 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 delegates asserted that patients can be emotionally unstable because they feel guilt 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 their regimens or have had a hard time sticking to the schedule, delegates said. 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 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.
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."