AORTIC 2011, Cairo, Egypt 30 November–2 December 2011

Disseminating information on prostate cancer in Africa

Virgil Simmons – TheProstateNet, Secaucus, NJ, USA

I’m Virgil Simmons, I’m the founder and president of TheProstateNet. We’re a patient education and advocacy organisation based in the United States and in Barcelona, Spain. Our mission is to really provide leading edge information on the diagnosis, treatment and management of prostate cancer. Our audience really includes patients, family members, care-givers, public health professionals, clinical professionals and cancer researchers who we all try to bring to the same page in terms of being able to understand how best to deliver information that folks can use to manage the disease.

What were you talking about at AORTIC?

We’re talking about prostate cancer, the major issue yesterday is that we had a patient advocates forum to bring all of the African continent advocates together, number one, to meet each other; to be able to understand what some of the best practices and standards that are available for them to use around advocacy; to give them tools that can help them raise funds in their community, that can build networks of shareholders, that can use the media appropriately, that can use intervention devices as necessary; to get the message out here to help their communities better understand the risk they face; be able to better intervene earlier in getting earlier diagnosis and earlier treatment and really to try to stop the negative impact of prostate cancer in these communities.

What are some of the messages and barriers?

The barriers are many. The message that we really want to try to get across is that prostate cancer is not a death sentence, that you can live with prostate cancer and that many of the treatments that are out here today manage prostate cancer as you would high blood pressure or diabetes or any other non-chronic killers. You can live with prostate cancer, have a very, very good life – if you get it checked early. So some of the messages that we really get across to them are how do you really implement an educational programme in your community? How do you involve public health people in getting that message out? How do you involve primary care physicians? How do you get specialists, all in part of your team, to really come together to benefit the community? And the message is one of collaboration, of really finding those stakeholders that have an interest in a healthy society, bringing them all to the table, identifying the problem in that community and then finding solutions for it.

The basic barrier is men - we believe we’re invincible, we believe that we’re never going to get sick and even if we do have something wrong, somehow we think, well, we’ll take care of it, it’ll go away and we’ll go through. We have to make men understand that they have to make themselves a priority and that health has to be a priority, as important as work is, as important as taking care of their family is, they have to take care of themselves because if they don’t, they can’t really do a good job of taking care of their family. Other barriers, obviously, are access. There aren’t the number of facilities that are available in Africa as there are in Europe or in America; there aren’t as many doctors available per 100,000 population; there are not as many medical equipment facilities, radiation treatment devices for example, available in Africa as there are. So we have to think of how do we overcome those barriers. But also get past the barriers of saying, well, if we can get men in to be screened, how then do we treat those ones who are found to have prostate cancer, again, looking at the dearth of facilities over here? So there are many infrastructure problems that are not going to be easily solved in the short-term nor by advocates but advocates are really going to be able to drive the message to government, to their communities of things that can be done and need to be done.

What about the ‘Barbershop’ Initiative

Going back to 2003 in America, we had the movie Barbershop which talked about a community barber shop on the south side of Chicago. And it brought back to mind my own upbringings in growing up in Chicago and realising that in the barber shop all problems get solved because you’d ask the barber anything and he had an answer for you. So I thought about the case of well you take that paradigm of having this all-knowing person who is a very important member of the community, has a lot of status and can move people to change their behaviours in many cases, how do we get that person to start talking about prostate cancer? How do we get them to use the power they have to be able to make change happen? So we then went and partnered with MGM studios for the sequel to the movie Barbershop and we created a national campaign in America that brought medical centres and major metropolitan cities together with local barber shops to be able to get the message distributed through the barbers, have the barbers talk about it and then refer their clients who were interested back to the medical centres for screening, testing and treatment if needed. It was incredibly successful - we in that first year screened more than 30,000 men, found more than 450 cases of prostate cancer that would have gone otherwise detected. And it’s continued to this day and it’s morphed now more into a public health initiative where what we are doing is working with local public health agencies to use the barber shop model to help disseminate education tools and programmes to their communities, to give the public health people the opportunity to go out there and reach communities that they couldn’t reach before for lack of resources, lack of awareness, lack of people to be able to go out and get the message across. And that’s been, again, very, very successful. We’ve now expanded that model to India, Australia and other parts of the world that we’re viewing; we’re going to be going into Japan next year. Again, because we find that it’s a way of breaking down barriers. People who have a fear of the medical system and the establishment don’t want to go into a hospital but if we can say, “Come to your barber shop, get the information,” in many cases come to the barber shop and get tested, we’re able to then break down a lot of the major barriers. So the barber shop has been a thing that’s worked very, very well and one we continue to expand upon.