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AIDS/MAC & Refusal of Treatment
Jan 6, 1997

I'm a Shanti-trained emotional support volunteer. My patient has AIDS and was diagnosed with MAC in November (1996). He is refusing treatment, both for AIDS and MAC. I see plenty of information on what will happen to folks who treat MAC, but what I'm wondering is, what will MAC do to him, left untreated? Thanks!

Response from Dr. Cohen

The main symptoms of disseminated Mycobacterium avium complex (MAC) are fevers, chills, and night sweats, caused by the presence of the bacteria in the blood. With time weight loss and wasting generally occur. If untreated MAC will go on to involve many other organs, including the bone marrow, liver, gastrointestinal tract, and lymph nodes. This organ involvement leads to problems that are much harder to treat.

When MAC takes over the bone marrow, people develop low blood counts: anemia and leukopenia (low white blood cell count). In the GI tract, MAC can cause diarrhea. When MAC gets into the lymph nodes surrounding the intestines, it can lead to severe abdominal pain.

We know that people with untreated MAC die sooner than people with treated MAC. It's not always possible to say that the direct cause of death was the MAC, but it's clear that it contributes to mortality.

I can understand someone refusing treatment for HIV infection if they feel they've had enough and want to emphasize quality of life over longevity. However, treating early-stage MAC is not usually difficult, and untreated MAC is very unpleasant. The quality of life of people with advanced MAC is very poor, and at that point it's usually too late to make much of a difference. I hope your patient reconsiders his decision.

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