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Sometimes I scare people.
Lydia and I got invited to come to the clinic where we do our research and present our data to the staff. That was this morning. When it was my turn, I introduced the basic concepts underlying my study, focusing on the HIV conspiracy beliefs because that's what I already have data on.
"Conspiracy theories have been found to be common in the general African-American population," I finished, "but no one has ever looked at whether patients in treatment have conspiracy beliefs. I think the assumption has been that once people are diagnosed and come into treatment, we give them education, they talk to their doctor, and they adopt accurate beliefs about HIV. But no one has ever checked to be sure that's what happens, until my study."
Then, before I put up my preliminary results slide, I asked them how many clinic patients they thought would endorse conspiracy theories.
"I have some patients," said one of the nurse practitioners.
"How many?" I asked her. "Five percent? Fifty percent?"
"No, no, just a few."
The nurse manager chimed in. "Early in the epidemic, I would say a lot of people. But not that many anymore."
I put up the results slide. There was a brief silence. Then the clinic's medical director asked quietly,
"This is from our clinic?"
Here's what the slide said. The numbers indicate the percentage of patients who agree or strongly agree.
36.8% The government created HIV.
42.1% A secret cure exists.
43.9% Drug companies don’t want a cure.
21% HIV is a genocidal plot.
22.8% Doctors experiment unfairly on minorities.
17.6% Doctors give experimental treatments without consent.
17.5% HIV does not cause AIDS.
"Okay," I said after I reviewed the results and gave them time to sink in. "Now imagine that you hold these beliefs, and you come to the clinic, and your doctor tells you, 'I want to give you these medicines, and it's okay because they've been approved by the government, and besides, the government is going to pay for them.' "
There was uneasy laughter.
And here's the scary thing: this is probably the best-case scenario, because these are the patients who actually come to clinic. If I surveyed people who aren't connected to care at all, I'm guessing that the numbers would be even higher.
"That was fascinating," said the medical director afterward. She still looked kind of stunned. "You're definitely going to get this published." I'm planning to write it up and submit it to journals this summer, instead of waiting for more data to trickle in. Because, yeah, I think HIV medical providers just have no idea.
"Conspiracy theories have been found to be common in the general African-American population," I finished, "but no one has ever looked at whether patients in treatment have conspiracy beliefs. I think the assumption has been that once people are diagnosed and come into treatment, we give them education, they talk to their doctor, and they adopt accurate beliefs about HIV. But no one has ever checked to be sure that's what happens, until my study."
Then, before I put up my preliminary results slide, I asked them how many clinic patients they thought would endorse conspiracy theories.
"I have some patients," said one of the nurse practitioners.
"How many?" I asked her. "Five percent? Fifty percent?"
"No, no, just a few."
The nurse manager chimed in. "Early in the epidemic, I would say a lot of people. But not that many anymore."
I put up the results slide. There was a brief silence. Then the clinic's medical director asked quietly,
"This is from our clinic?"
Here's what the slide said. The numbers indicate the percentage of patients who agree or strongly agree.
36.8% The government created HIV.
42.1% A secret cure exists.
43.9% Drug companies don’t want a cure.
21% HIV is a genocidal plot.
22.8% Doctors experiment unfairly on minorities.
17.6% Doctors give experimental treatments without consent.
17.5% HIV does not cause AIDS.
"Okay," I said after I reviewed the results and gave them time to sink in. "Now imagine that you hold these beliefs, and you come to the clinic, and your doctor tells you, 'I want to give you these medicines, and it's okay because they've been approved by the government, and besides, the government is going to pay for them.' "
There was uneasy laughter.
And here's the scary thing: this is probably the best-case scenario, because these are the patients who actually come to clinic. If I surveyed people who aren't connected to care at all, I'm guessing that the numbers would be even higher.
"That was fascinating," said the medical director afterward. She still looked kind of stunned. "You're definitely going to get this published." I'm planning to write it up and submit it to journals this summer, instead of waiting for more data to trickle in. Because, yeah, I think HIV medical providers just have no idea.
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(Any news on your looking into a possible next step?)
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Wow.
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Medical providers really need to know what they're up against, because it's not just the virus that's the problem. Your work is quantifying this reality so they can truly comprehend this is very important, and I commend you.
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While all these thoughts are great...its 2am here in Australia and I really should be asleep, not scribbling questions to myself about advocacy and minority groups and how long term non interventional monitoring studies could potentially be effected by these sorts of beliefs....
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I myself will admit to a sneaking suspicion that Big Pharma does not want to find cures for chronic diseases that are managed with expensive drugs, and does want to classify more and more conditions as chronic diseases that must managed with expensive drugs. It's not quite strong enough for me to count it as a belief, but it's definitely there.
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Will you be doing follow on studies as to potential interventions that might work or help people to dispell those myths? This seems like it would be an almost uphill battle to work through because the more you try to help and be convincing, the more people probably get wary and uncomfortable and scared.
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(Anonymous) 2009-06-23 08:01 pm (UTC)(link)You do important work.
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This is influenced by