It sheds a light on a very important topic that I believe wasn’t getting enough awareness, which is how challenging breast cancer is in conservative communities, especially in the Middle East or North Africa. So the Science Health Education Center was founded almost five years ago with a vision to bring the best of practices and healthcare, focussing on cancer, in the Middle East and North Africa.

One of the things that we have noticed is that despite the lower prevalence of breast cancer in the region in comparison to Western countries, the mortality is much higher. One of the reasons behind this, one of the biggest reasons, is the fact that most of the patients get diagnosed at advanced stages. So in some countries in the Middle East, like Algeria, more than 65% of the patients presented at stages 3 and 4 which, obviously, contributes to the higher mortality rates in the region.

So we started looking at the early detection programmes available and the screening programmes available in the region and universal screening programmes are non-existent in the Middle East and North Africa so mainly opportunistic screening is the only thing available for the patients. So we started looking at the participation rates in these screening programmes through local partnerships. We have local partners in different countries in the Middle East and we saw, looking at the participation data, we noticed that, based on the previous literature, the participation rate can be as low as 3% in some countries. There is a lot of underutilisation, which was interesting to us. Even in low- and middle-income countries the first thing that comes to mind is that if you want to support them then we need to be focussing on providing them with the medical devices. But what was interesting is that there was a lot of underutilisation in most of these countries because women were not participating, were not willing to participate, in these screening programmes.

When we looked at the reasons behind all of this, the most addressed reasons that were addressed by all women in high-income countries, middle-income countries, low-income countries in the MENA region were stigma – there is a huge social stigma – there’s fear and there’s lack of awareness and there’s lack of recommendation by physicians. So because patients have to be self-motivated they also need to be educated about the importance of screening. So when they don’t receive any kind of recommendation by their healthcare providers, most of them don’t even know about the existence of these screening programmes.

So we realised that we have a lot of things to do in that field and we believe that if we focus on advocacy, spreading awareness, providing education for both healthcare professionals and targeting women as well, we can reduce the burden of cancer using the least resources.

What are some of the problems with screening in conservative communities, and what’s been done to overcome these stigmas?

What’s known about the stigma – it’s something that we don’t talk about. So it is existent, we all know it but no-one is willing to admit that it exists. But in some of the qualitative studies that were done in the region, it showed that women… some of the quotations that just stuck in my head, and also based on our conversations with the patients, based on our conversations with the healthcare providers, some of the patients were saying that patients in these communities specifically faced two illnesses – cancer and the society. A lot of them felt that how they were perceived in the community completely changed in a negative way and that was the hardest thing for them to deal with. The absence of any kind of psychological support, this can be a real issue because a lot of women will be like, ‘This is something that is very stigmatised and we wouldn’t receive any kind of social support. So we don’t even want to face reality if we have the disease.’ So a lot of women in their minds are like, ‘Okay, even if we have cancer we wouldn’t want to know about it.’ So they just avoid screening, they avoid early the detection programmes and all of that. This is just exacerbating the problem.

So what we’re trying to do is just to provide workshops, culturally sensitive workshops. The founder of the Science Health Education Center, Dr Navid Madani, she’s a senior scientist at Dana Farber and she’s originally from the region, from Iran specifically, I’m from Palestine specifically. So we have roots to the region and we are so familiar with the culture so we don’t come across as outsiders trying to impose certain cultures or trying to change the community. We understand the community, we come from these communities and we are just trying to improve things for them there.

So I believe this helped us a lot, the strong ties with the community helped us a lot. The local partners that we have in different countries made the work much easier for us. I believe that, based on the feedback that we have been getting, we are achieving some good progress. We still have a long way to go but we are still achieving some good progress. I’m hoping that we are going to be able to support women in the best way they need and they deserve.

Are there any success stories you would like to share?

Our centre has been founded and endorsed by Dana Farber almost five years ago so it’s recently established. SHE Cares and [??] and [??] focuses on breast cancer specifically in the MENA region is a newly established initiative. So we are still in the phase of just implementing these workshops through our local partners, as I mentioned. We have done some workshops in the region, the feedback was very positive. Some of the observations that we’ve noticed that women tend to feel much more comfortable sharing and asking questions in women-only spaces. We could see the difference in how women interact and how engaged they are in the discussions when they are given their own spaces. So we decided to make our workshops women-only workshops so that women get to ask any questions they want, they get to share their stories, empower each other, and we found this to be extremely empowering for all of them because they started to feel some kind of unity which they didn’t feel before. They started to feel less isolated, which is one of their biggest issues and it is the outcome of stigma.

So by just having these workshops, providing education but at the same time connecting them to each other, providing this group therapy, by just talking to each other, sharing their stories, asking the questions, we found this to be extremely, extremely helpful and the feedback has been very positive.

But we aspire to extend this to more countries, have more workshops done, train more staff to be able to conduct these workshops on a larger scale. We definitely will have an evaluation phase in which we will be obtaining data to see how successful this model, how can we change it, how can we apply it to other countries with similar cultural settings.

Have there been any plans to involve government or legislation into this program?

Since we are a hospital and a research facility, most of our local partners are also hospitals and research facilities. So, one of the examples, King Hussein Cancer Center, it’s one of the main centres in the region, we have been collaborating with them for the past few years. We still don’t have collaborations directly with the Ministries of Health or the government because at this phase we are just more focussed on universities and hospitals.