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Personal Perspective

HIV Treatment Education in 2002

Fall 2002

The importance of adherence to HAART and its correlation with virologic rebound and resistance is well documented. Unfortunately, behavioral interventions to improve adherence are only occasionally successful. As a medical provider delivering healthcare to people with HIV, I welcome and include treatment advocates in my interactions with patients. I also work as a clinical instructor at several community-based organizations, in conjunction with the AIDS Education & Training Center (AETC). These programs provide a unique opportunity to observe doctor-patient interactions.

In a time when we finally have effective HIV therapies, especially with once-a-day regimens moving slowly toward the forefront, we still have a tremendous number of virologic failures (some reports are as high as 50 percent at 48 weeks). We need all the help available to deal with the complexity of adherence. It is time for the medical community to recognize that we need help from those individuals who have the most experience in dealing with the barriers of getting well. We are not doing a fabulous job alone in our efforts to improve adherence. We need to increase patients' support systems and better understand the barriers to healthcare for each patient, and to then personally tailor our interventions. To do this effectively, WE NEED TREATMENT ADVOCATES.

Many well-educated investigators and healthcare professionals believe that they can develop adherence programs on their own. But treatment advocates already have many of the tools needed to assist not only the patient but also the healthcare team in addressing the life problems that can make adherence difficult. Many advocates are themselves living with HIV and may face the same issues that impact patients, such as drug addiction, homelessness, transportation issues and, especially for women, being the primary caregiver for the family. Treatment advocates can help healthcare providers understand what it's like to live with this disease -- that the very medications prescribed to maintain health can sometimes make patients feel worse than the disease itself.

Treatment advocates are trained to provide support to those who do not process new information easily, or who lack the strength to advocate for themselves. This can apply to all of us who face a difficult medical decision. AIDS activism began when gay men and lesbians demanded attention to a disease that directly affected their loved ones, but their activism has benefited other illnesses, such as cancer.

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This past June, I was diagnosed with breast cancer and decided that I deserved a treatment advocate during surgery, to ensure that breast conservation would be the goal of the procedure and that a modified radical mastectomy would be done only as a last resort. I ended up having the mastectomy (removal of the entire breast), but I know that the correct decision was made because my surgeon had discussed his findings with my advocate, who protected my wishes and rights. This may not be an option for everyone, but I would like to think that it might become a standardized approach to managing illness.

Working with treatment advocates as an integral part of the healthcare team has definitely helped our patients decide if they're ready to start HAART and to overcome problems that may be impacting their quality of life. Changes in the future should be made to improve the training of treatment advocates so that standardization can define common goals and data can be collected for future validity studies.

It can be very frustrating to attempt to advocate for a client who doesn't want to accept your intervention or to work with a healthcare team that feels you are interfering with their medical practice or that you may be providing misinformation. Hang in there; change always takes time. You provide a very important role, so try another approach. Schedule a face-to-face meeting between you, your client and the medical team, since this may be the only way to handle confidentiality concerns. You may want to include a social worker to improve communications and make the meeting less confrontational. Be persistent. Learn from each encounter. Educate the healthcare team about your role as a treatment advocate, and share your common goal of improving not only your clients' viral load, but also their quality of life.

Treatment advocates provide a very important and essential service -- your clients need your expertise, as does the medical community. Some of us just don't know it yet.

Debra Johnson, M.P.A.S., N.P., P.A.-C. is an adjunct faculty member, Keck School of Medicine, Los Angeles, California.





  
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This article was provided by AIDS Community Research Initiative of America. It is a part of the publication ACRIA Update. Visit ACRIA's website to find out more about their activities, publications and services.
 

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