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Protease Positives

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Dear editor,

As the health-care provider of Sonja (I am her nurse-practitioner, not her doctor), I want to comment on protease inhibitors and add a few points ["Bitter Pills," April 25]. First, I thought Justin Hayford drew a sensitive, personal portrait that rang true with the Sonja that I know. Her struggles demonstrate that health-care providers cannot simply tear off scribbled medication orders from the prescription pad and bark out instructions. Discovering the patient's point of view, obstacles, and strengths takes up a lot of my patient-care activity time. Yet, as sensitive as I try to be, there were aspects of Sonja's difficulties in taking her medications that I only learned about in the Reader. It was humbling.

As a health-care provider to about 100 patients with various stages of HIV disease (but most have advanced cases and few T cells), another of my main tasks is to pump them up with hope. In the article, Sonja was taking about 20 pills a day. Several other patients take 27-30 pills each day. One young man has taken 27 pills a day for the past 15 months. This may seem incredible to someone not infected with HIV, yet before we (myself and my colleagues at the HIV Primary Care Center) figured out the right combination of medicines, I could not keep him out of the hospital. Twenty-seven pills a day may seem like poor quality of life, but the alternative of having to deal with the vagaries of hospitalizations and feeling ill all the time are worse. This person has not had one fever nor one day in Cook County Hospital since February 1996. He is a volunteer dance teacher for children in CHA projects and is considering going back to paid work.

This level of relative health would not have been possible in 1994-1995 prior to the advances in HIV treatment, including protease inhibitors. In six years at least 49 of my patients have died. With so many deaths, I tried hard to adjust to the role of "palliative" caregiver, but I never managed to feel comfortable, always wishing for better tools to treat and cure. It is painful to remember each patient who died too soon to benefit from the new treatments. I feel grateful that there are more options available to treat Sonja's HIV disease. I wish we could cure Sonja.

As a primary health-care provider at the HIV Primary Care Center at Cook County Hospital, I am a nurse-practitioner. A nurse-practitioner is a nurse specialist, a role extended beyond basic RN competency by education, usually at the master's or doctorate level, and by required continuing education by various certification boards. The doctors and physician assistants at the HIV Primary Care Center do many of the same patient-care activities that I do, but as a nurse-practitioner, my nursing education emphasized the psychosocial, health promotion, and education needs of patients. In 49 states, except Illinois, nurse-practitioners are legally recognized and may prescribe medicines.

Finally, I appreciated Hayford's critique of the economic and health-care system's ability to provide the care that Sonja will need to thrive in the future. At present, however, the HIV Primary Care Center at Cook County Hospital remains committed to provide very expensive care and medicines to persons with HIV based not on ability to pay, but on need. And that is why I work there.

Deborah Wolen

N. Artesian

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