Dr. Anisa Mburu, a gynecological oncologist at the Aga Khan Hospital in Mombasa, Kenya, and the founder of the She Fights Cancer Foundation, spoke with us about her work in awareness and access to care for gynecological cancer patients in her country. Don't miss her beautiful advice for patients facing stigma in their lives, and also her tips for anyone who wants to start being more active in patient advocacy and awareness!

Read below for a (lightly edited) transcript of our conversation or catch the replay in our Reels on Instagram! 

 

World Gynecologic Oncology Day 

Thank you so much for joining us! Could you please tell us about yourself and about your work?

Dr Anisa Mburu 

I'm really excited for all the work that you're doing and all that you can do in the future. I'm a GYN oncologist, based out of Kenya, at the coastal end of Kenya. I did my two years of clinical fellowship in gynecologic oncology, that was after four years of residency in obstetrics and gynecology. I’m also an IGCS Fellow and an ESGO and ENYGO mentee.

World Gynecologic Oncology Day 

That's wonderful. And what about your foundation?

Dr Anisa Mburu 

I am the CEO and founder of the She Fights Cancer Foundation. It's pretty new, almost just about a year old. It comes from a place of women empowerment, where we're looking from the healthcare providers to the patients themselves.

The whole point of She Fights is that we are all about access to care, particularly access to surgical care, because we find a lot of women are not able to access surgical care.

And so what we do is we go to different county hospitals, we screen some women, and we offer free surgical care for the women who are eligible for it. And once we're doing this, we also include the general gynecologists who are in those particular hospitals, so that we can teach them some of the surgeries that we do, so that when they do have these cases and we are not around, at least they can be able to manage them.

And even after we've we're through with the center, we continue following up with local gynecologists so that the patients continue being cared for in the right way. And whenever they have questions or consults, we are always in communication. So in essence, we just trying to build capacity in gynecology management. And whenever we go to a center, we also try to do some talks to the community, to the primary health care workers who are there, just so that can also spread awareness.

World Gynecologic Oncology Day 

It’s really interesting You’re focusing not only on the patients and the general population, but also on your medical peers and helping educate them. I think that's unique in this area.

Dr Anisa Mburu 

Absolutely. The main reason is because we're very few. In terms of GYN oncologist, we have a population of over 50 million, but currently we have about 20 GYN oncologists and a few others in school. So by the time everyone gets qualified, and then most of them, unfortunately, are centered in the big cities—Eldoret, Mombasa, Nairobi—and so the patients who are away from these big cities, they have no access to GYN oncologists. And so we're trying to bridge that gap.

World Gynecologic Oncology Day 

We’ve talked about the access to care issue. Would you say that that's one of the most pressing concerns for gynecological cancer patients in your region?

Dr Anisa Mburu 

When it comes to challenges that our women face, that's actually one of the big ones. And I want to mention three “As.”

The main one, Access to care, because we find that in terms of getting access to screening, to diagnosis, to the actual care, the chemotherapy, radiotherapy, it's very difficult for a lot of women because of the financial aspect, the distance aspect, and, of course, all the stigma that comes around it.

And the Affordability, actually. Because when it comes to access to care, you might have this care, but you can't afford it, right? You might need a CT scan, but you can't afford that. All the diagnostics, all that. Some of these centers that can actually do some of these procedures, they're so far away from the patient. So from the distance the patient has to travel to the cost of actually paying for whatever diagnosis, diagnostic and treatment, it can be quite a big burden.

And the third “A” in the challenges that we face is now Awareness, because if I do not know what is ailing me, I cannot go seek it, and I cannot get the treatment. We still have a lot of issues with awareness, and a lot of it comes from ignorance about this kind of cancer, as well as the stigma that comes from cancer in general.

World Gynecologic Oncology Day 

Do you think that there's just the stigma of cancer itself, or specifically because it deals with a woman's body?

Dr Anisa Mburu 

For women's cancer, it kind of hits different because in general, cancer, for most people, it seems like a death sentence. So people will be terrified to get this diagnosis. People will actually avoid getting that diagnosis because they won't even want to come to hospital.

But then, when we're bringing in the element of these are women's cancers, specifically affecting the reproductive system—these are areas women are very shy about, these are the private parts.

And so the shame that comes out of it, the body dysmorphia that comes from having to go through surgery for, say, vulva cancer, and then you become disfigured. I mean, it really hits different for women.

And so you'll find that a lot of women, they also know that their role in the society is going to be diminished because they're going to be ostracized.

Most women will be divorced and even completely abandoned by their husbands. To the point that we've had women who share health insurance with their partners, and the husband completely removes them from health insurance because they say, “you're going to die.”

Or worse, if it's cervical cancer, because it's caused by a sexually transmitted infection. Now the blame game comes: “Or you are promiscuous, or you're not doing this, and that, and that…” kind of mentality. So a woman would not even want to come [for screening and treatment] until it's very, very late in terms of diagnosis. Because they're just too scared of all the things that will come out of it.

And you know, some of them will even self-isolate because, you know, unfortunately, for some of these cancers, for the reproductive parts, vulva, vaginal, cervical, there's a lot of swelling and discharge that happens. And so women will just segregate themselves. They won't say in anything in public. Nobody would want to stay near them.

So they'll just isolate themselves, or not come to hospitals, live on their own, and they're suffering silently, which it's quite painful, to be honest.

World Gynecologic Oncology Day 

How are you or how are organizations in Kenya working to meet these challenges?

Dr Anisa Mburu   

There's a lot of things that are happening, especially with our Ministry of Health, and one of the things that has really been encouraging is where the Ministry of Health has been very vocal in terms of coming up with, say, screening programs that are set up nationwide, so that this woman, or rather any woman, who shows up to a health facility, at least, there's some guidelines that the primary health care workers can follow in terms of screening for this kind of cancers, especially cervical cancer, breast cancer.

Having those guidelines rolled out to the country is a very important step. And then there's also other small organizations, big organizations, international collaborations that are happening where there's a lot of, say, awareness campaigns.

So for example, in Kenya, we do a lot of cervical cancer awareness in the month of January. Announcements about events for free, screening, conversations about cervical cancer. And it becomes such a big nationwide event. Our radio stations boost it. Our TVs, there's a lot of adverts about it.

Hospitals themselves, they'll come up with campaigns on the same and so it literally sets the year and sets the stage here, rather, for these other cancers.

We also do we collaborate with the rest of the world, so to speak, on World Cancer Day, and during that time, of course, we try to include a lot about reproductive cancers.

And for June, I think we mentioned talking about Jump for June for uterine cancer awareness month. I know in Kenya, we've taken this up as a challenge, and we are doing posters with us jumping for awareness.

 

And the best part is one of the organizations that does a lot of activities is called the Mombasa Walk Movement. On June 28 we're doing a 15 kilometer walk on raising awareness for uterine cancer. And during that there's always so many people who come for these walks. We talk about uterine cancer awareness and tell people how to they can protect themselves.

When we have these kinds of organizations coming together and helping build on what is on the ground, it really helps.

One of the things that I need to mention about stigma—We've talked about women who will be so scared, or they're completely ostracized from the community or divorced by their husbands.

But one other thing that we have to be aware of is that, especially with cervical cancer, which is HPV-linked, there are women who have been victims of gender-based violence (GBV).

And so one of the things that my foundation has done is partnered with an organization that deals with gender-based violence. We had a walk on the same and we had a big conversation about risk for cervical cancer and how to break it to the partners.

Because one of the things that we were trying to talk about is partner involvement when you're talking about cervical cancer, vaginal, all these cancers. We need to involve our men, because I think sometimes, we forget them. And so it can protect our women, keep them safe from GBV.

This was one of the organizations or functions that really touched me closely, because I've had to really deal with women who've gone through a lot of violence, be it physical, psychological, and it makes them not follow through with their treatment. Having such organizations willing to speak out and partner with us now, the cancer people or the cancer specialists, then we have pathways for women, and they're raising more awareness.

World Gynecologic Oncology Day 

That sounds like such a great support program for people. And that's a really nice comment about bringing in both genders to talk about awareness too. I think a lot of campaigns kind of leave the men on the side. But you know, as we I keep hearing in these interviews, right, it's a family affair.

When somebody gets cancer, it's not just the person who has the cancer, who's affected and who needs the support.

One other thing that we've been talking about is the workplace stigma for gynecologic cancer. Is that something that you have worked with—talking to business owners about how to support people who have gynecological cancer?

Dr Anisa Mburu 

This a very important question. We want to understand how in the workplace these women can be protected so that they can continue their work, and they can also not be fired or things like that.

And so one thing that we've been doing with my hospital, we go to different business organizations, from banks to insurance companies to or whatever company, and we talk about this kind of cancers.

So we have organized educational activities. It can be a chat for like an hour, where we also entertain questions. And we include everyone from the staff, both men and women. So we talk to them and explain some of these cancers to them.

And then for some women I have had to treat, I've had to document—do letters for them explaining what they're going through, so that their employer can understand that this woman, who was probably doing a lot of activity [before], now she needs to come back [a little slower] because even during the treatment and after treatment, they still need to be under some sort of care.

Because I know during survivorship, I think that's when most of them are in trouble because they're not able to work at the capacity that they initially used to work. And so we are actually able to write the letters to the employer. Some, with the permission from the patient, I just pick up the phone and I talk to the employer and explain.

Because, you know, for a lot of people, they don't understand this. They don't know what is happening. In fact, there are some employers who think that as soon as someone is on chemotherapy or goes through surgery, they cannot work again, and they find a way to silently let someone go.

And so we're trying to combat that.

And we have, unfortunately had some women who've lost their jobs because of one reason or the other. Either they are physically unable to continue, or emotionally unable, or sometimes the employer just decided, “Nope, that's it. You're gone.”

And unfortunately, in terms of legal issues, some of these women, they're not able to fight for themselves, and so as much as we try to bring in legal societies on board to protect them, not all of them are able to. The more we try to bring the noise and talk about it, that's the only way we can actually make a difference.

World Gynecologic Oncology Day 

You were talking about people self-isolating because of the fear surrounding cancer. That's very difficult if you have some job that's public-facing, for example. It's very hard to combat that.

What would you like to say to gynecological cancer patients who come across stigma in their daily lives?

Dr Anisa Mburu 

Oh, well, there's so much we can say. Because for these women, there is one thing I always try and tell them: “You are not your diagnosis. Your body is not broken. In fact, it is brave. You are not defined by the shame, by what other people will say, what other people say. It's not your business. Leave them be. You have to understand your own true worth. Because the more we go through the fear, the judgment, it will only hinder progress. And so, lock out the noise.

“Take the courage to focus on yourself, focus on your healing, focus on your journey. Bring the people who are close to you closer. And for those who are not willing to listen or just do not bend to your will, so to speak, just leave them out and just focus on yourself and your loved ones and go through this journey. Let your voice be heard, let your story be told, because you are not alone in this.”

We had a function where we brought together some survivors sharing their journey and what they went through. And I actually told them, “Sometimes you'd think that you're alone, but even us, as the caregivers, we are walking the journey with you.”

When I see a patient coming in, going through whatever they're going through, maybe they're having a lot of financial issues. They're having partner or spousal problems we walk through. I feel that pain with them. Sometimes, when we are talking with another oncologist in the same meeting, we're saying, as soon as the patient walks out, you're there looking at books in the middle of the night! You want to check—did I do everything the way I'm supposed to? Is there any more I can do?

So you're never alone.

We will focus on compassion, not condemnation. We are going to hold our heads high and not let anyone put us down.

I just want all the women to remember and know that they're very deeply, very fiercely loved and protected.

World Gynecologic Oncology Day 

That's very beautiful. That is very, very nicely said. Thank you for that message.

Are you working with any patient organizations?

Dr Anisa Mburu 

Yes, we do have survivorship groups, and right now we don't have any for say, only cervical cancer or only ovarian cancer. It's just mixed. Breast cancer is the one that really took root, because I think a lot of activities for breast cancer, were way ahead of most of these other cancers.

And so we are literally piggybacking on the breast cancer survivorship groups, and we are bringing in survivors from all these other cancers and enrolling them into these programs. Because you see when we're talking about cancer as a stigma, one of the things to be combatted is that it's considered to be this big monster and everything.

The best thing is to put a face to the monster: Have a survivor coming to talk to people about it, because with this kind of collaboration, then we are able to reach more people. Because you'll be like, “Oh, that one has walked the journey. So I can also do it.”

And so I really piggyback on the survivor advocate and advocacy groups, because I think their story is louder than anything I can say.

World Gynecologic Oncology Day 

Absolutely! I'm always so grateful when we get patients to come and share with us.

What advice would you give to somebody who wants to start their own awareness event?

Dr Anisa Mburu

You can start small. It doesn't have to big, a huge budget and all that.

The point is, start small. That little talk that you give in a community, that radio station that you go to speak at, even in vernacular, just so that you can reach more people. That is a start.

Organize these events and then build up. Once you've done that one event, it should not be the end.

You need continuity. Build on what you've started. This time, maybe you've done it on your own. Next time, talk to other people, find people in the same space, collaborate with them.

And I'll give you an example I have. The She Fights Cancer Foundation, it's mostly GYN oncologists in the group, but we meet with a foundation called Jeniffer Cancer Foundation. She’s a cervical cancer survivor. And so we do activities with her, and we are planning one where we're going to talk to young girls, and we're meeting with another that deals with young girls. And so all three of us, we're meeting in one event to spread the word.

So start small. Collaborate. Network up with people and then talk about what you're doing.

You know, people say they want to be shy. They're like, “No, I don't. We'll stay in the shadows. We don't want to look like we're arrogant.”

But when you talk about the work that you're doing, that's how people know what is happening and they can participate.

I was never a good social media person. I hated it, in fact. But then I realized that one day, I just did a random post on Facebook, and someone reached out to me, and she ended up coming for screening. We actually found that it was cancer that she had, and we ended up getting to treat her.

And so I realized through social media you can reach someone, and you can guide them, direct them maybe to what they need. And so I started doing it even more.

People will reach out and be like, I have this swelling, but I'm in this part of Kenya, and I tell them, you know, for that, go to this particular hospital, go look for this particular person, and they are helped.

Of course, we do not give medical advice online but refer them appropriately.

So anything that you do, make it loud and it will grow. And then tailor your message.

When you're doing this kind of awareness, I know there's a lot of global activities, but sometimes someone wants to understand it in a way that is local to them.

So know your audience, tailor your message according to what you want to say and then keep on just including other people. From World Gynecologic Oncology Day to other associations, there's so many international players that we can include.

But don't just sit in your corner, because that little that you think that you have is actually a lot to someone else. Because that small message that you think is so useless, that's the message that could save even one life!

 

World Gynecologic Oncology Day 

Is there anything else that we didn't cover today that you'd like to say to our audience?

Dr Anisa Mburu 

I want to keep on urging people to work together. Just because we have an ocean separating us, we have races separating us, religion separating us—we are all the same, and we should not be fighting against each other.

We should be helping each other, building each other up. This hatred, these conflicts, they are useless, especially when it comes to just us as humans.

You cut someone, we all bleed red, and we all should just be united.

Help each other out. Help your brother next to you, help your sister next to you. It will not take away anything from you, and together we can grow. You have nothing to lose, essentially,

World Gynecologic Oncology Day 

That’s very beautiful. No, we’re not crying on the internet! [*sniff*]

Thanks again for giving us your time today.