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Date of Report: 11/01/2003
Source: New England AETC
In 1988, when the New England AETC (NEAETC) was first funded, a small group of persons living with HIV (PLWH) assisted in planning and implementing the first NEAETC programs. Originally the PLWH were part of the faculty's clinical practices and, over time, they became more visible at programs. Other people living with HIV inquired about participating. Eventually, persons living with HIV representing all affected groups became part of the resource faculty.
At first, their major role was telling their stories and putting a face on the epidemic. As more and more therapies became available, these individuals guided each step of the training process by sharing information on their real life issues related to taking medications, managing symptoms and the challenges of adherence. They taught audiences how to provide comfort and care for those who did not benefit from the therapy. They also helped to identify how healthcare system obstacles play a part in obtaining medical care. The passion and skills of the PLWH enriched the NEAETC planning meetings, workshops, panels, and retreats.
The role of the PLWH faculty at the NEAETC has evolved and it now includes helping providers understand the complexities of living with HIV infection, teaching them the need to develop a partnership with patients, and teaching both patients and providers that the HIV fight continues.
Currently, the NEAETC works with approximately 100 resource faculty in all six states. At the community level, the resource faculty has worked with clinical program specialists to develop the clinical consultation program that is now in 15 sites throughout the region. Additionally, the HIV resource faculty has presented at several national and international meetings including: the amFAR update, The National Association on HIV Over Fifty (NAHOF), and ANAC.
Education for providers of HIV care is constantly changing. The field is very technical, and new information comes quickly. In these fast-paced times, it is easy to lose sight of the fact that people living with HIV offer insights into this disease that are better conveyed by those who have lived it. At the NEAETC, persons living with HIV are involved at every level of training including the planning group where they shed light on projects and help focus the program toward the client's needs and those of their providers.
The NEAETC is committed to working with any person with HIV infection who is interested in becoming a resource faculty member. He or she is paired with an experienced clinical faculty member and observes one or more training programs before participating in a program. In addition to these observations, resource faculty participate in formal faculty development programs.
While the NEAETC focuses on prescribers and medical treatment in urban areas, many healthcare providers still have the misconception that they have never met a person with HIV infection. The most effective programs, in areas where this belief exists, include a person who has HIV, and that looks like all their other patients. Information about the newest therapy may sit on a shelf, but face-to-face encounters with people living with HIV infection change attitudes and behaviors.
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