Professor Peter Newman at the 2009 International Conference on AIDS in Asia and the Pacific. Scientists around the world are racing to create an AIDS/HIV vaccine, but once it's available, what will it take to persuade people to get inoculated?

Professor Peter Newman, a professor and Canada Research Chair in Health and Social Justice at the University of Toronto, has been studying what winning combination of factors would "sell" people at risk on the benefits of the vaccine. He's the lead author of a study on the subject that appears in the December issue of the publication Health Services Research.

• His key findings: If a vaccine is developed, it doesn't mean at-risk people would use it. (The study questioned 1,100 such individuals in Los Angeles. High-risk individuals are defined as those engaged n risky sexual behaviour, the sex-trade or intravenous drug injection.)
• Top considerations are: effectiveness, side effects and cost.
• These considerations vary depending on region. Cost was an important factor in the United States, for example, because more than half of the Americans questioned did not have health insurance, but people also wanted a vaccine that is 99 per cent effective, has no side effects, and lasts for years. Professor Newman also spoke to smaller sample groups outside the U.S. In Kenya, sex-workers and wives/girlfriends indicated they would be willing to accept a vaccine with a lower effectiveness rate and higher side effects, as long as the price was very, very low. In Thailand, the main concern was whether taking the vaccine would cause an individual to test positive for HIV, even though the individual did not have the disease.
• The study of high-risk individuals in Los Angeles indicated that some individuals might increase risky behaviour if they took what they considered an "effective vaccine." But any eventual vaccine would not be a "magic bullet," so preventive measures would still be required (such as condom use and no sharing of needles), and should be emphasized by health authorities.

Newman found that while biomedical researchers work on a vaccine, it's important that someone research the sociological side. Now is the time to be gathering this data, the study showed, so that the two sides work together to create a vaccine that will be accepted. Here are excerpts from a CBC News interview with professor Newman about his study and its findings.

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CBC News: What issues did you explore in this study?

Newman: We looked at a broad section of the population, especially people who tend to be at high risk for HIV. What might be their preferences about a future HIV vaccine? What are the things that would matter to them most in terms of, "yeah, I would take this vaccine," or "no, I don't want to go there, it's not worth the risk." So that's the primary thing we looked at.

The second thing we looked at is the possibility that if you feel you are protected against the disease, perhaps you would do things differently. And in the case of HIV, that could potentially lead to people increasing their risk behaviour … if — and this is important — if they believe that they are completely protected.

The problem is that a vaccine for HIV is not going to be nearly completely effective and so some of what we are looking for is planning for when a vaccine comes out. How do we change people's mindsets about this thing that is not a magic bullet, but that's part of a whole array of things we can use to prevent HIV.

CBC News: Is there a perception issue with an HIV vaccine?

Newman: We all have our way of thinking and frankly most of us associate vaccines with 'Okay, now I'm fine.' The other thing, though, is sometimes we associate vaccines with "Okay, that means that you are going to put a bit of flu inside me." … Imagine when people think you are going to put a little bit of HIV inside me, [even though] it's not the case.

There needs to be a clear message out there that there's no way that the Canadian government would ever allow testing of a vaccine with live HIV. They synthesize stuff in a laboratory that couldn't possibly give you HIV. And those are the messages we have to plan for, and the way to do that is a respectful way to dialogue with people to understand what's their own — I use the word "mental models" — which really just means the whole kind of array of beliefs and concerns and feelings and thoughts that they have about vaccines, about HIV.

Vaccine questionnaire in Swahili at a medical clinic in Kenya. CBC News: What reasons would people have for not getting vaccinated?

Newman: No vaccine would be released if it weren't safe. However, it isn't going to be perfect…. For some it's, 'I'll wait, I'll wait until you get a better one. This is the first one, maybe in another year you'll have a better vaccine.'

That's one. Another is, 'I'd like to see what happens when people get this vaccine. And even though you tell me all this science, I'll see when some other folks get it and then I'll make a decision.'

Unfortunately … if people are waiting and vaccine is out and we know that there are tens of thousands - and worldwide millions — of new cases of HIV each year, if we're talking about delaying years, that's many many more cases of HIV that could have been prevented.

CBC News: So even if it were a 100 per cent sure thing, still 100 per cent of people wouldn't take it who maybe should. But if it were 50 per cent effective, then even fewer would take it. So is that the No. 1 factor — efficacy?

Newman: From this study, in terms of the North American context, yes.

CBC News: Let's talk about the other factors.

Newman: As probably people would think, the next is side effects. What might happen?

CBC News: Just to be clear — this is theoretical only, because no vaccine exists yet. So you created theoretical vaccines and then you asked people what they thought about it, and they were worried about side effects?

Newman: What we said to them is, for example, maybe you would have fevers for a couple of days that would then go away; maybe you would have swelling if there were an injection or you could get a skin rash. So we stipulated things like that. Actually I had spoken to some vaccine scientists who are working on this who can't be sure. They know they won't release something that's going to be bad but nonetheless ... I'm interested in seeing, what if there were slight fevers and then they went away, would that really steer people away from getting the vaccine? And there was some concern about that.

Thai research co-ordinator Suchon Tepjan and two volunteers from Empower, with Professor Peter Newman and University of Toronto doctoral student Carmen Logie in Northern Thailand. CBC News: What about money?

Newman: Money's third. We looked at a range in terms of, let's say the government covered it but said we don't have enough money in the public health budget to pay the total amount. And these vaccines are going to be very expensive. At 10 bucks, it was not a disincentive. You know, people would pay it out.

When we start going up to $100, $200 to pay for it, then it drops off in terms of how many people would accept it. Now, this is among largely a low-income sample that we're talking about. HIV could happen to anyone, but it happens to affect people more who are in poverty, who are marginalized — for whom money is likely to be more of an issue.

That's a result that would suggest subsidies to make sure that if a vaccine were available, especially for low income people, it should be free.

CBC News: Let's talk about the people who might take the vaccine - how might that affect their risky behaviour?

Newman: In the case of HIV, it's a reasonable thing to think about. Just to put it in context, when we talk about the flu vaccine, for example, people have issues with it but they usually don't say, "well then people are going to jump in the snow and not wear enough clothes in the winter!" You know, it sounds silly, right? …

But with HIV, okay we need to have to have this conversation in terms of adults getting the vaccine, younger adults … because the reason people may increase their risk behaviour is not because they're crazy or irresponsible. It's because by and large they have a reasonable belief, based on our own understandings of what a vaccine is, that if I'm completely protected then it's okay and I don't have to use a condom every time I have a new partner or new whatever.

Some people do understand that if we had an HIV vaccine. there are still sexually transmitted diseases that it won't prevent. [But] what we found is if a vaccine were 99 per cent effective, then 13 to 14 per cent of people said they may increase their risk behaviour in that case…. When we said that this vaccine is 50 per cent effective, there were still some people, but it went down to 7 per cent who said I might increase my risk behaviour.

What it suggests is that we need to figure out ways to present a vaccine to the public that doesn't kind of give it this aura of a magic bullet, everything's okay….

The vaccine is a part of a combination of prevention methods. It's a very hard disease to prevent and it's creating a horrible toll right here in Canada and worldwide. So, as many things as we can put in place to try to prevent new infections, then we would be much better off, and hopefully initial vaccines will be seen as a very important part of that picture rather than a replacement for condoms, safer sex, delaying sex for young people.

CBC News: What about how the vaccine is administered?

Newman: It's possible that a vaccine comes out but you have to go a couple of times. People by and large said that's okay, that's not a problem

Professor Peter Newman and colleague Dr. Venkatesan Chakrapani at the 2009 International Conference on AIDS in Asia and the Pacific. CBC News: We've seen some of these issues played out with H1N1. Do you see similarities?

Newman: Yes … unfortunately even as the vaccine is available, many people are afraid to take it. So the clear relevance is: let's say we're lucky and we have an HIV vaccine some time in the future - that vaccine is not going to be helpful if it's not going to be taken up by people, if people don't accept it and trust it and get it. And especially people at risk. …

So clearly, there is a parallel with H1N1. Just having a vaccine is certainly important, but it's not enough. There are a lot of social factors; there are a lot of behavioural factors in the HIV that we have to look at and plan for.

And another point that I draw a parallel is not to dismiss people's concerns and fears as being crazy … because it doesn't really help and it really just contributes to more mistrust. And that's what part of this is about: trust.

CBC News: At what efficacy level do you think the HIV vaccine should be introduced?

Newman: It's probably something that would be answered in part by people who [have] expertise in epidemiology.

… Certainly something that achieved 50 per cent could be seriously considered for use. Twenty per cent - no. Who knows, at 40 per cent they might consider it. I mean … if you have a place in south sub-Saharan Africa where one out of three people are infected with HIV, you might pretty much decide almost anything is going to help. In Canada, we have a much much lower infection rate, so that we need higher efficacy to have more impact to dampen the epidemic. So to some extent it depends on the status of the HIV epidemic.

CBC News: So are you suggesting we could have a two-efficacy standard, depending on where the HIV epidemic is?

Newman: Yes, it's certainly plausible that a vaccine can be used in certain parts of the world with very high infection rates that perhaps in Canada it wouldn't be worth it from a cost-benefit analysis yet. It could create some political issues up the road. I think we have to talk about these things and we have to think about them … We have to continue being on message, as with H1N1 — it's very challenging. Sometimes I think that people in public health have a lot of expertise, but their expertise might not be media, for example. But they have to create an extremely good message, a very consistent message for people, having some facts that are based in reality to counter the stuff that comes out of the woodwork sometimes.