Indeed, now that effective AIDS therapies are available, one of the most critical challenges is to bring marginalized communities, especially African Americans, into care. The proposed strategy is a comprehensive program to train, place, and support a cadre of highly-trained African American peer treatment educators who will arm patients with information, help them develop individualized treatment plans, and assist them in advocating for better care. Because the first step into treatment is getting tested, they will also promote HIV testing among African Americans. They merely make it manageable and, ultimately, it is patients who are responsible for managing their illness. While doctors play a critical role, patients are the ones who must adhere to the regimen, swallowing up to 20 pills a day on a strict schedule, often with special dietary requirements.
Patients also have to cope with side effects, which can include chronic diarrhea and nausea.
In short, quality AIDS care requires the active participation of the patient for many years, perhaps for life. Such involvement simply won t happen if patients don t understand why they need to shoulder these responsibilities. So patients need information about the science and treatment of HIV, about practical ways to improve adherence in the context of their particular lives, and about many other related issues. Unfortunately, African American patients often have few opportunities to learn what they need to know to maximize their care, because many obstacles stymie us. The barriers include poverty, distrust of the medical establishment, stigma, lack of education, and substance abuse.