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A slice of my life:
"So he definitely has HIV?"
"Definitely."
"But we can't tell him?"
"No."
"Why not?"
"We're not supposed to know."
That was my intern, explaining to me a delicate situation we'd inherited. He had started on the floor a few days before me, and at the time we spoke he only vaguely understood the problem himself.
From what I could gather, Mr. Preta (not his real name) was a 68 year-old man who had arrived at the hospital 3 weeks earlier with shortness of breath and a cough. His oxygen saturation dropped only when he walked or exerted himself, which was a classic symptom of Pneumocystis carinii, a pneumonia seen commonly in HIV patients.
Mr. Preta got very sick very quickly. So quickly, in fact, that he was intubated that same night, before the intern could get consent for an HIV test. Now this young intern, only months out of medical school, had the best of intentions for his patient. And he thought he was putting his cleverness to good use when he checked Mr. Preta's CD4 count, which came back at 10. (In a healthy person it would be greater than 500.) So this pretty much clinched the HIV diagnosis, without getting consent for the test from the either the patient or his family.
It's not clear at what point the intern realized what a screw-up this was, whether it became apparent to him on his own or someone had to explain it. Irregardless, the next three weeks (just before I arrived) were spent trying to get Mr. Preta off sedation enough that he would wake up and sign a consent form. They were ultimately unsuccessful, and I inherited Mr. Preta with an "unofficial" HIV diagnosis.
Four days later Mr. Preta's daughter arrived from Florida. She'd been told that we wanted to do an HIV test on her father, but we couldn't because he was sedated (standard protocol when a patient has something uncomfortable like an endotracheal tube in his throat).
"I'll give consent," the daughter said. "I'm his next of kin."
We explained that, unfortunately, due to laws passed in the 1980s to protect HIV patients, no one but the patient himself was allowed to consent for an HIV test.
"That's crazy," she responded. "How does putting up obstacles to diagnosis 'protect' people with HIV?"
We didn't have a good answer for that one.
Two more weeks were spent weaning Mr. Preta off his endotracheal tube and waking him up so he could sign the consent form. When we finally confirmed that he had HIV, his viral load was found to be 84,000, astronomically high.
For five weeks, during a critical illness, this 68 year-old man was not given the essential HIV medicines he needed to regain his health. Situations like this highlight the ridiculously outdated approach taken by many of our current laws about HIV. Patients sign a general consent form when they arrive in a hospital, and nearly every disease --- Hepatitis C, Hepatitis B, all types of cancer and infection --- can be tested for under that general consent. Patients who arrive in a coma or intubated can receive the care they need for every life-threatening illness they might have .... except HIV.
When laws requiring a unique consent form for HIV were put in place, there was a serious threat of stigma and discrimination against people with HIV/AIDS. That possibility still exists, but HIV has been to a great extent "mainstreamed" with other illnesses. People with HIV live long, healthy lives. There are many medicines for their disease, just like there are diabetes and hypertension. It is true that their disease may eventually kill them .... just like people with diabetes and hypertension.
The medical community in New York is currently speaking contradictory messages regarding HIV. On the one hand, we claim to be mounting a statewide effort to seek out as many of the undiagnosed cases of HIV as possible. Most estimates put the number of undiagnosed between 30,000 and 70,000. Despite the enormity of the task of diagnosing all these people, we have not reformed outdated laws that prevent us from doing so.
What can you do? Support New York State Assembly Bill #A04016, which would allow health care providers to test for HIV without a separate consent form. In other words, to treat it (and by extension people with HIV) like any other illness.
Which is a good thing. In case that wasn't clear.
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