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What options can I have?
Sep 21, 2005

Greetings and gratitude for being available, I am 46 F, diagnosed '88, was under care and on meds up until 1 yr ago. Because of hurricane homelessness could not find a provider for over 6 months. Now I have a provider, but he is not someone I can communicate with and I do not like the way he just tells me what to do based on his "feelings". Anyway, I have lived with the neuropathy, shingles, nauseau, diarrhea for years and years. Four yrs ago I developed Lipo, severely. I have finally managed to lose 10 lbs. of back/belly fat. I still don't look normal, but I have a mental image that I do. My question is does the medical community help PWA who choose not to take medications? Will I be denied care for the OI's that I will conitnue to have because of my choice? When I lived in Florida, I was told by my provider that if I did not take HIV meds, they could not see me and or treat me for anything? Is this the concensus of all medical personnel? Is this a federal guideline? Does a person have any real freedom to choose what is best for them? Thank you in advance for taking the time to address this series of very important questions. Sincerely, DaphneeLee

Response from Dr. Young

DaphneeLee- I sorry to hear about your situation. It's clear that there is a lot of variability in the philosophies of different HIV healthcare providers. There are treatment guidelines, but such guidelines are not law (and hopefully will never become so). Patients' freedom to choose is an essential part of informed consenting for treatments or procedures (and actually is part of US Federal guidelines too).

In our clinic, we operate under the principle that patients wishes for (or against) treatments come first. This is tempered by a strong effort to provide balanced education about the risks and benefits of treatments. If you were my patient, of course, we would take care of your symptoms, irrespsective of whether or not your were taking antiretroviral medications.

I don't think that it's responsible for healthcare providers to refuse to provide care simply because you refuse to take antiretroviral medications.

You might look at the American Academy of HIV Medicine's website ( to find alternate HIV specialists.

Good luck, BY

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