With today's arsenal of effective antiretroviral treatments for HIV, many newly diagnosed patients go on to live long and healthy lives. However, some patients face challenges that make it difficult for them to stick to their antiretroviral treatment. Patients have to be willing and able to take medication every day, but for many, drug adherence is not as easy as it sounds.
As clinicians and case managers can attest, "willing and able" is not a rote cliché. Many patients are unable to take medication because they struggle to meet their other basic needs, such as food and housing security. Others are technically "able," but face psycho-social challenges because of cultural beliefs, depression and other factors in their lives that derail their HIV treatment.
An HIV diagnosis can be an extremely stressful event, and doctors might worry about how patients will handle the challenges facing them. Clinicians often try to identify the patients they think are unlikely to come back for appointments and stick to treatment. Sometimes, these patients are easy to identify because they are homeless, food-insecure or addicted to injection drugs. However, in most cases it's very difficult to predict which patients are high-risk.
Addressing Basic Needs
Frances Morales, an HIV counselor and case manager at Brigham & Women's Hospital in Boston, Massachusetts, worries most about the homeless patients under her care. Morales, who specializes in HIV case management in children and young adults, said that taking care of a patient's housing and other basic needs must be the first step before focusing on treatment and drug adherence.
"Not only do you give someone [test] results that change their life," Morales said, "but you also have to realize that, when it comes down to it, they don't have anywhere to go once they leave your office."
A large part of Morales' job is linking these patients to public assistance and housing programs. "You need to take care of the most basic needs that the person has in order to have them consider taking care [of] something as important as an HIV diagnosis," she said.
Lack of education can also make it near impossible for some patients to navigate the paperwork and bureaucracy of public assistance programs. Morales organizes a lot of three-way calls with her patients and public assistance employees. Morales listens as her patients try to explain what they need, and she steps in if communication breaks down. Morales says that this technique has helped many of her patients learn to navigate these systems on their own.
Newly diagnosed patients with severe drug addiction also need a lot of active intervention before they start on treatment, said Jeffrey Hsu, M.D., assistant professor, Johns Hopkins University. As a psychiatrist, Hsu sees many newly diagnosed HIV patients with cognitive or behavioral problems that stand in the way of their antiretroviral treatment.
When patients are severely addicted to opioids, it's difficult for them to make it to the doctor's office for appointments, Hsu said, so treating their addiction is the first step.
Identifying Other High-Risk Patients
Even patients with stable income and support networks have trouble sticking to treatment. Social and cultural factors might get in the way, and patients often consciously or subconsciously decline medication.
Poor adherence is often difficult to predict, said Nancy Reynolds, RN, Ph.D., professor of nursing at Yale University. Reynolds has spent much of her career dedicated to solving the riddle of why some HIV patients have a hard time starting and staying on antiretrovirals.
"It's something we haven't fully nailed," she said. "We have a good idea now about what factors are related to poor adherence, but we're not great at, in an anticipatory way, [predicting] who is going to have problems with adherence."
Reynolds said research in fact shows that when health care providers try to identify high-risk patients based on their socio-demographic factors, it "hasn't really panned out." Reynolds believes that a better strategy is to ask patients about their belief systems.
For example, do they belief HIV is a death sentence? Do they truly believe the medication will keep them healthy? Does treatment violate their religious beliefs? Are they afraid other people will find out about their HIV status?
Once these factors are identified, then it's the clinician's responsibility to explain the value of treatment in terms that the patient can understand. Too often, health care providers describe the importance of medication adherence in "medicalized" language, Reynolds said. She says that these technical explanations simply don't fit within the patient's worldview.
Treating Depression First
Depression is an extremely limiting factor when it comes to medication adherence. Every clinic should screen for depression when a person is first diagnosed with HIV, Reynolds said.
Hearing the news about a positive diagnosis can be one of the most stressful events of a person's life. Often, a positive diagnosis can be a trigger for depression, Hsu said.
Reynolds' past research shows that "people who had dire views about illness are the ones who had more difficulty adhering to medication," she said. Some patients already suffered from clinical depression prior to their diagnosis, and once diagnosed, feel helpless and despondent when it comes to seeking treatment.
In Hsu's experience, it's not beneficial to start patients on antiretroviral treatment until their depression is addressed first. Hsu said it's a good sign if a patient is treated for depression and consistently takes antidepressant medication. If a person is regularly taking antidepressants, it might be possible to gauge his or her willingness adhere to HIV antiretrovirals, he said.
Leaving the Door Open
Sometimes, despite Morales' best efforts and educational outreach, some of her patients still decline treatment. Her most challenging patients are those who were prenatally infected, and have been coping with their status since birth.
For these patients, antiretroviral medication is a grim reminder of their status, and something they would rather not think about. When patients consciously decide to stop medication, it is "one of the most difficult things to witness," she said.
Reynolds noted that, for many patients, even the act of taking a pill every day is a significant barrier for treatment. Still, "I think it should be somebody's right to decide to go off medicine," she said.
"As a provider, I think you want to make sure they have as much information available to inform those choices," Reynolds said. Morales agreed. For her, the first step is confirming that her patients have their basic needs addressed. Next, the patient must be properly informed about all the benefits of antiretroviral treatment. After that, adherence "just has to be within them," she said.
For Morales, delivering quality care is about never becoming angry or frustrated with her patients, and never "closing the door."
Sony Salzman is a freelance journalist reporting on health care and medicine, who has won awards in both narrative writing and radio journalism. Follow Salzman on Twitter: @sonysalz.
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