The problem with prevention

Never before have the tools to stop HIV been so diverse. There’s increasing evidence that early treatment not only saves lives but drastically reduces the risk of transmission. Early testing and timely treatment during pregnancy can reduce the odds of an HIV positive mother passing the virus to her infant to less than two percent.

But “getting to zero” new HIV infections is far from a done deal. That’s because primary prevention—the avoidance of disease before biological onset—isn’t working well or, at least, not well enough. In the Caribbean the rate of early sexual initiation remains high. HIV related knowledge is moderate to low. Teen pregnancy remains common. And while high risk sexual relations are frequent, condom use during those encounters stands at just 54 percent. All this contributed to an estimated 12,000 new HIV infections for the region in 2010.

Dr. Sonja Caffe, the Pan American Health Organisation’s HIV/STI Prevention Adviser, offers a frank appraisal of what the region must do differently for prevention to work. Her suggestions? Forget about mass media and general audience messages. Instead, understand and respond to the people at highest risk and have our primary healthcare responses tackle behaviour change.  
 
 

Q: When it comes to HIV prevention what works? Do we know yet?
SC: There are some core principles for health promotion and prevention. It doesn’t matter whether you’re talking about HIV or non-communicable diseases (NCDs). These core principles are there in the literature, as well as theories and models that can help with the design of effective interventions.

When we critically study the HIV response we often see that it grew out of a reaction that was not lead by public health experts but by interest groups… rightfully so in many cases. The history of the HIV response is that it was stigmatised and criticised by the authorities. It was the civil society activists who called attention to the issue and developed responses. That has had an influence. Many sound public health principles that have worked in other programs did not come to HIV or came over late.

In general HIV began to lead its own life and became this vertical thing. The multi-dimensional approach that is a part of any sound public health program developed very slowly. Effective prevention planning requires stakeholder analysis with the appropriate mix of prevention based on the segmentation of groups. As we were going through the steps with HIV somebody would come into this information and it would be big news. It was never new. It was there all along.

Collectively we have learned that the HIV response is not sustainable because it is vertical. We paid a high price to learn basic public health methods and we lost a lot of time.

Q: Are the financial challenges the Caribbean is facing in terms of dwindling external funding forcing us to finally get it right?
SC: Where we are now is that a lot of investments have been made with limited effect. We reinvented the wheel again and again. We are now beginning to come to our senses because of the money situation. We cannot continue to do things that are ineffective. We are being forced to be more critical.  We’re going back to the sound public health principles: there are certain things we need to apply to be successful.  Integration is not going fast enough. That is one part of us going back to sound public health principles that would help us to be more efficient.

Another challenge is that the organization of our health systems is still very clinical. The way we have structured our organisation of services is that when you are ill you go to the doctor. They are curative, not preventative. This also makes it difficult to expand HIV prevention in health services. PAHO has been working with member countries on the renewal of primary health care towards a more health promotion and disease prevention orientation, and we can already see some changes. It is working.  It is growing. Developments like the greater attention for reduction of the burden of non-communicable disease will also help us to develop the necessary health promotion infrastructure in our health systems. This can strengthen HIV prevention if we apply an integrated approach. We need to go to the basics of health promotion and explore how we apply these principles to HIV and STIs.

While HIV resources are less, we can still use what we still have, to make a big difference in the health sector through strategic action.  For example, in Suriname a master of public health program was established by an HIV project. This strengthened not only the HIV program, but contributed to strengthening of the health system.  These types of actions can help us face the challenge to make the HIV response sustainable, and create a strong health system to support it.

Q: But how does it work? What do you say to or do with an individual to get them to change their behaviour?
SC: The interventions would be that wherever they enter the health system we have access to information and commodities for behavioural support.  Behaviour change is not easy, but it is achievable if the person gets the right information, motivation, skills and support over sufficient time. To develop this mix of services, we need to have insight into, for instance, what people already know, what would motivate them to change, and what they need to maintain the behaviour change. These things will be different for different groups.

For example: a young girl who is pregnant comes to the clinic. Do we provide condoms? Are we using the opportunity to work with her to prevent a second pregnancy as well as HIV and STI infection? Is she offered screening for HIV and syphilis? Is she asked whether she is able to negotiate condom use with her partner?

There is also a community component that does not only focus on the individual but on a more comprehensive approach. Is she experiencing gender based violence? Is her partner forcing her to have unprotected sex?  Are we able to bring the male partner in to test as well? Is she dependent on this partner for her income? So there’s both an individual and a social component to the organisation of services at this point.

Q: Is lots of money wasted on ineffective communications purporting to be for behaviour change?
SC: Absolutely. It continues. We’ve done evaluations in countries where a significant amount of money is spent on developing written materials and posters with very generic messages. We know that they don’t necessarily work to change behaviour. In fact these things are called cues to action, that can help when a person is already changing their behaviour. If we’re looking at behaviour change a poster has a very limited chance for a person to say ‘I’m going to do things differently’.  Seeing a poster isn’t the thing that makes a person use a condom. You have a poster for everything. Some are totally wrong by the way.

We might write a folder that is as big as a book.  Nobody reads it. We spend a lot of money on material that is technically wrong and not efficient but we feel we have done something. We spend a lot on mass media but who is the message for?  Is it tailored? What is the right approach for the right audience? We keep shooting things out hoping that someday it would have a result. We don’t evaluate. If we did, that would help us to understand that we are making very little change through generic materials and messages.

I have noticed that we are beginning to get better at monitoring and evaluation. It is partly because donors are beginning to demand more and more for us to demonstrate results. On the other hand you still see issues in terms of how do you monitor when there is a lack of technical capacity to do so adequately. What are you monitoring? How many condoms you have distributed? How many folders? How many people came to a community meeting? And what does that mean? If we don‘t have a clear target we cannot measure it. M&E starts with proper design of the intervention.

Q: In a context where there are dwindling resources and we’re being forced to do more with less, how do you determine where to direct your prevention efforts?
SC: Let’s use the example of young women.  We need to try and identity which young women are at the higher risk instead of blanketing all young women: not all young women are at equal risk. We need to begin to learn… to find out which are at elevated risk and why. Are there factors like gender dynamics, cultural issues and poverty that really put young girls at risk? Without understanding that and helping them to become empowered and in turn to reduce their risk, we would not lower those new infections.

When I begin to ask questions about prevention it doesn’t take long to characterise where the girls are. People might look at them with contempt. It is so easy for us to describe that they have sex for cell phones or sell themselves for a calling card. That’s judgmental. We need to ask ‘who are the young girls who put themselves at risk and why is it happening to them?’ It is not a choice that they make lightly.

We need targeted interventions that really look at gender dynamics and look at underlying factors that we call behavioural determinants. We need to build the technical capacity for health promotion and disease prevention, and we need to strengthen M&E capacity. Doing more with less might be a blessing in disguise, if we make use of the lessons we learned during the last 30 years.
 

Q: When we speak about young women and specific target groups, HIV positive mothers come to mind.   Do we understand how to respond to the reproductive health and family planning needs of women living with HIV?
SC: That is another issue I was also thinking about. In some of our countries up to 30 percent of the women who are HIV positive and give birth, know their HIV positive status and have repeat pregnancies. That intrigued me. It’s really informative to understand what is driving it. Of all the countries in our region there were only two countries where I found they had targeted sexual and reproductive health services for women living with HIV. Clearly this group will have different needs. There are issues surrounding how hormones are interacting with my ARVs, and how to manage other issues, for instance vaginal infections and discharge.

There’s a very high prevalence of repeat pregnancies among women living with HIV in many countries. In some sub-cultures children cement a relationship.  If I don’t give the man a child he can walk today or tomorrow. Babies allow them to at least stay a while. Boyfriends say ‘I want to have a baby by her’. They actually put themselves at risk. We don’t understand the cultural and social factors that interact to make these repeat pregnancies happen. I think it’s time for us to begin to understand it or we will not be able to intervene. We look on the outside and judge.  Who am I to say that you cannot have this baby? We need to increase our understanding of the real issues.