Sometimes I scare people.

[rivka]

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.

Comments

[kate_nepveu]

Wow. Good work.

(Any news on your looking into a possible next step?)

[melebeth]

When it's published do me a favor and drop me a line? Both I and (I suspect) the HIV Guide are going to want to promote it :)

Wow.

[hobbitbabe.livejournal.com]

Wow. That is ... stunning.

[jinian.livejournal.com]

Good choice of order for the results. It starts high and gives a nice (scary) thematic flow. It bodes well for your paper(s?). Can't wait to see this published.

[going-not-gone.livejournal.com]

The sad thing is that these beliefs are self-perpetuating--the more African-Americans believe this stuff, the fewer will pursue treatment or follow through with med regimens, the larger the percentage of AIDS deaths will be in the African-American population. And that imbalance in the death rate will make the theories seem more plausible to that population....lather, rinse, repeat.

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.

[tassie-gal.livejournal.com]

As an epidemiologist those numbers are SCARY and I'm going what are the potential biases in the study. As a study designer I'm going - ok, how do we recruit non clinic people without biasing the results? As a student in ethics I'm going Ok, what are the ethical implications for this in a treatment sense?
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....

[vom-marlowe.livejournal.com]

I would put "agree" or "agree strongly" to Drug companies don't want a cure. And I'd probably listen pretty openly to arguments about a secret cure exists and Doctors experiment unfairly on minorities.

[janetmiles.livejournal.com]

I don't believe that a cure exists and is being suppressed, if only because I know how hard it is to keep secrets. Somebody eventually talks.

[kuangning]

I'm surprised that "doctors experiment unfairly on minorities" isn't higher, given that it has been proven true within living memory. Hello, Tuskegee Syphilis Study.

[janetmiles.livejournal.com]

This is good -- and scary -- work. I hope you're able to get it published, because it needs to be seen.

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.

[fairoriana.livejournal.com]

What good and important work you are doing. Thank you.

[marith.livejournal.com]

Gah. I wonder how common these beliefs are across all HIV patients in treatment - across the whole population. Your bringing this forward may help a lot more than this one clinic. Thank you.

[redbird]

Those are scary numbers. I hope they get published, and publicized, soon.

[nelc.livejournal.com]

How many patients don't believe any of those things?

[kcobweb.livejournal.com]

Wow. Go you.

[ricevermicelli.livejournal.com]

Those are both scary and important numbers. They really need attention.

[faithwallis.livejournal.com]

All I could think was "Wow. How do you combat something like that? How do you help people understand that you're trying to help when in the back of their minds you know they're thinking "Oh, yeah, that's what someone trying to poison me would say?""

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.

[ruthi.livejournal.com]

I think it may be a good idea to let go of the metaphor of 'combat'. You want to help people, not to fight them.
This is influenced by ozarque and her posting on metaphors and communication.

[(Anonymous)]

Heartbreaking numbers.

You do important work.

[lizzibabe.livejournal.com]

I'm stunned, myself.

[firecat]

I'm glad this important information is going to be published. Go you!

[rivka.livejournal.com]

Well, let's not jump to that conclusion until a journal actually accepts it. But yeah, I think I've got an excellent chance of getting this into a good venue.