Interview with Dr. Sara Nasser & Joelle Abou-Khalil from PARSGO
We were very lucky to sit down for a conversation with two of the Pan-Arabic Research Society for Gynecologic Oncology (PARSGO) team on Instagram Live! We were joined by Dr. Sara Nasser, co-founder and vice president of the organization, and Joelle Abou-Khalil, the patient advocate lead.
Dr. Sara is a gynecological oncologist from Germany and Italy, a member of our parent society ESGO, and an active member of the European Network of Young Gynaecological Oncologists (ENYGO), while Joelle founded Matealda, a patient advocacy initiative for ovarian and other gynecologic cancer patients in Lebanon. She is also active with the Swedish Network Against Gynecological Cancer.
You can find out more about their organization at parsgo.org.
Read below for an excerpt of the conversation (edited for length) or (re)watch the conversation in our Instagram Reels!
World Gynecologic Oncology Day
I'm so happy to be here today, speaking to the PARSGO team! Sara, could you explain to us what PARSGO is?
Dr Sara Nasser
Thank you. Beth, it's a pleasure to be here with all of you today. The Pan-Arabic Research Society for Gynae Oncology, we span a really wide geographical area. What exactly is pan-Arabian? So our members come from the Middle East, North Africa and the Sub Saharan Africa region.
But what we are trying to do, and what we've been trying to do since 2016 when I co founded, with Professor [Jalid] Sehouli, the society, is to actually empower the Arabic and African women to look after their health worldwide.
So it's not just about the Arabic or African women in the region, but also the Arabic and African women outside of that region. So we're talking a lot about the diaspora and the women globally everywhere who identify with that.
And what we want to do is give a platform for education and training, for research opportunities, patient advocacy and women empowerment. We’re a bunch of surgeons, oncologists, scientists, researchers, healthcare professionals, nurses, physiotherapists and patient advocates, who all come together with that one vision
World Gynecologic Oncology Day
Joelle, you are the patient advocate lead for PARSGO, but you also have some other initiatives. Could you tell us about them?
Joelle Abou Khalil
I have an initiative that is called Matealda, which I started in Lebanon when I was living there. My mom had ovarian cancer and then she passed away. So I initiated this Matealda Foundation, which was to discuss and raise awareness about ovarian cancer in Lebanon and in the region, and then it kind of grew on Instagram, and then I met Sara, and I became part of PARSGO.
I'm also part of the network for gynecological cancer awareness here in Sweden, where I'm located at the moment. So I've been living in Lebanon and raising awareness and now here in Sweden.
World Gynecologic Oncology Day
That is a lot of work. And you're also a small business owner, yeah. So you are a busy lady!
Dr Sara Nasser
It's amazing because Joelle and I actually met through Instagram. She wrote to me through Instagram, and we had our first phone call when I was in Italy on a visit, and we just realized that actually we share the same vision, particularly when it comes to patient advocacy activity in the region.
So myself, I'm half Lebanese and half Italian, so we share the roots in that region. And Joelle was telling me about all the issues and the problems that she had with her mom during that time in Lebanon during her journey. And we realized that actually part of the PARSGO mission is to help improve that situation and give patient advocates and patient advocacy groups in that region—not just Lebanon, but that region—more of a global visibility and global voice.
World Gynecologic Oncology Day
What are some of the most pressing concerns that you see for gynecological cancer patients in this region?
Dr Sara Nasser
This is a difficult question, because a lot of it is pressing. But what we find is that mainly, and I think I can kind of divide it into three aspects, so mainly access to health care, when it comes to women's health, is, is an issue in the region. And again, I'm talking about the PARSGO region. So that's a very wide region. So you know, in some countries, this might not be as much as in other countries, or in some countries, it might not be as much of a problem.
We have 24 countries, and over 550 members, and they span from countries like, for example, Saudi Arabia, to countries like Sudan. And you can imagine that Saudi Arabia will have very different issues from Sudan in terms of women's health and gyne oncology and how resources are being used and how resources are being allocated, but generally access.
Access to these resources is a problem, but also obviously actual resources. Having the resources for prevention, for screening, for treatment of gynae cancers is also a problem.
And then the third one is the stigma associated with it. So sometimes access is there, resources are provided. So you have state of the art healthcare equipment, you have the expertise, but the stigma prevents women from seeking out these services, and when I say services, I'm talking about also a wide range, because gyne oncology spans everything from prevention, from screening, from treatment, from follow up, palliative care, psycho oncology support.
These are all aspects that go into the care of a woman with gynae cancer, and having stigma associated with any of those aspects can actually prevent us from or prevent our patients from, accessing things that are available.
World Gynecologic Oncology Day
So even if it's there, they might feel somehow like they shouldn't reach out for it?
Dr Sara Nasser
They might feel prohibited, or there might be a shame associated with it.
World Gynecologic Oncology Day
Joelle, from a patient advocate perspective, could you speak about this?
Joelle Abou Khalil
I second what Dr. Sara said. The stigma associated [is] why patients doesn't really want to reach out. Even if they have the resources, there might be some shame.
But also in our Arab countries, most likely it's, you know, the women who want to take care of other people rather than herself. So it's not only shame, but also the fact that she doesn't put herself first, or she doesn't really, you know, notice the symptoms because she's not aware of them.
She brushes it off, you know. Because the symptoms are not so obvious, very common symptoms that can be associated with other things.
And so women, and I think this applies to all over the world, actually, when it comes to stigmas.
The financial issue, is a huge part of it. In our country, because of the economic situation, because of the political situation, but it's also, you know, the lack of awareness, the lack of being courageous enough to go out and talk about, you know, things that are female, female reproductive and other things that might be a bit of shameful to discuss as a woman, especially in our countries, but I think it has changed a bit. It has shifted.
And what we've done with PARSGO, I think, is really fundamental for that change, because when you provide the platform where other people talk about it, where other people, you know, feel more connected to like we're providing it, not only digital platform, but also like we have this idea of bridging a gap between the doctors and the patients, where, for example, I'm part of the tumor boards, which is something unique. That kind of brings us together, like patients and caregivers with doctors and vice versa.
And so that communication facilitates, you know, the that issue of stigma, right? Starting that conversation.
So yes, we have a long way to go, but we've started.
World Gynecologic Oncology Day
That's what we need to do! You guys were just in Morocco, for example, in May, for your PARSGO event. Do you want to talk a little bit about what you were doing there?
Dr Sara Nasser
We were in beautiful Casablanca. Whenever we do a workshop or a Congress, we always try to incorporate all the three pillars that we stand for, so education and training for healthcare, staff research, collaborative research projects, but also patient advocacy and women empowerment.
Bringing in all the aspects in terms of prevention, which is where we're moving to nowadays. And I think this is really good, that we're going back to the idea that prevention is better than cure.
With many gyne oncology cancers like cancer of the womb, cancer of the neck of the womb [cervical], where these cancers can be prevented due to lifestyle factors or vaccinations.
We have quite an active membership in Casablanca. Some of our most active members are in Morocco and in Egypt. But we have very active members in Tunisia, from Lebanon, from Jordan, from Saudi Arabia. And so we brought the PARSGO membership to this two-day Congress, where we spoke for one day about cervical cancer, so cancer of the neck of the womb. And we discussed topics like prevention, the vaccine, the HPV vaccine, but we also talked about treatment, so the surgeries, the radiotherapies, and we try to bring in the aspect from a patient perspective, from a doctor's perspective, and also from a research perspective.
And we also talked about the aspect of global, bringing it to the level of the WHO, bringing it to the level of healthcare authorities, because a lot of the issues that create difficulties in accessing healthcare services—and also create more stigma—is that locally, the healthcare authorities don't allocate resources, are not able to allocate resources, and so healthcare authorities, ministries of health, need to be involved in this.
We had also, for the first time, a patient advocate from Morocco.
Joelle Abou Khalil
I think it's very important when patient advocates go out and talk the way she did. She was brave enough to discuss very private things with her journey, and I think it's important to talk about it.
I know that many people don't feel comfortable in doing it, so it's okay to be anonymous sometimes and share your journey, which is really as important, but also, like she did, speaking in front of all these young doctors as well as the more experienced doctors, that's good. I think it's very good for the younger generation going into the field of oncology and gynecology, to actually see from a patient's perspective as well.
I think it's a learning opportunity for everyone, but it's also very important message that she conveyed, and it's important for us to have those people come, and even if they're anonymous, for us to share their experience with others and the region, so that they also can know that they're not alone.
We all say that “you're not alone,” and most people maybe feel alone, but really they're not, because everyone can be subject to cancer, even doctors.
It's difficult for us to talk about it sometimes, but I think it's important as well.
World Gynecologic Oncology Day
Back to what we were talking about earlier, stigma, which is this year's campaign for World Gynecologic Oncology Day—patient stories are so powerful.
Joelle Abou Khalil
I don’t think we have enough patient stories. We don't have enough people coming out and talking about it, which is normal, which we understand. But, you know, maybe we should have more support groups, which we also right now trying to start at PARSGO for the region.
So anyone who feels like they want to talk about something, or need a support group, just reach out to us!
Dr Sara Nasser
I think it's so inspiring to hear Joelle talk about this. It’s so powerful to have one patient story, but to have a collective of patient stories is even more powerful and more impactful, and will actually help us, from a doctor's perspective, that is what's going to give pressure to the health care authorities. It's actually the patients that make pressure to change things.
World Gynecologic Oncology Day
I interviewed Dr Sehouli, who is the president of PARSGO [and President-Elect of ESGO] for World GO Day, and he always says, “let's make noise,” right?
Dr Sara Nasser
Let's disrupt and let's make noise absolutely! Definitely.
World Gynecologic Oncology Day
So bringing us to World Gynecological Oncology Day, which is only two months away. Do you know what you'll be doing for September 20?
Dr Sara Nasser
We’ve been participating in World GO Day since COVID, actually, when we were in the lockdown. And we did a small video, and I remember that we really enjoyed that, because there was no way to connect. And so World GO day was one of the few things, one of the few activities that we could do at that time.
Joelle Abou Khalil
We were thinking this year to focus more on the patient advocates. We want to amplify the voices in the region, so we're going to have some of our patient advocates share messages about stigma.
Hopefully people will hear us, and you know, want to make some noise with us and break the taboos.
World Gynecologic Oncology Day
It's been such a pleasure speaking with you both. Thank you so much!