Demand for Equity and Unity: Cervical Cancer Survivors in Africa Speak Out

Gaborone — When Karen Nakawala-Mayond experienced a nagging backache she put it down to her love for high heels. And then when she started bleeding in between her monthly periods, she thought it was the onset of menopause. That was until her gynaecologist insisted that she be screened for cervical cancer.

After her results came back positive, thoughts of dying and leaving her children and loved ones behind consumed her, but with the support of family and close friends, Nakawala-Mayond was able to start treatment within three weeks and underwent 25 sessions of chemotherapy over seven weeks. During this time her work as a radio show host for a Lusaka radio station kept her spirits up.

After finishing her treatment, Nakawala-Mayond, started a Facebook page to raise awareness of cervical cancer – within four weeks the page had about 130,000 women who needed information about prevention, screening, early detection, and treatment.

Cervical cancer is the leading cause of cancer deaths among women in sub-Saharan Africa but is preventable and curable if detected early. It is also one of the most common cancers among women worldwide, primarily affecting women in low- and middle-income countries.

According to the World Health Organization (WHO), 70,000 deaths from cervical cancer could be prevented annually if the efforts to end the disease in Africa by 2030 are urgently stepped up to ensure increased access to critical services for timely detection, care, and prevention.

A huge milestone was achieved in 2018 when the WHO Director-General, Tedros Adhanom Ghebreyesus announced a global call for action to eliminate cervical cancer which aimed to renew political will to make elimination a reality. In August 2020 the World Health Assembly adopted the Global Strategy for Cervical Cancer Elimination.

The strategy sets the 90-70-90 targets that must be met by 2030 for countries to be on the path towards cervical cancer elimination. They are that 90% of girls should be fully vaccinated with the HPV vaccine by age 15 years, 70% of women should be screened with a high-performance test by 35 years of age and again by 45 years of age, and 90% of women should be identified with the cervical disease receive treatment (90% of women with precancer treated, and 90% of women with invasive cancer managed)

Leading up to the 73rd WHO AFRO Regional Committee session in August 2023, Uniting for Cervical Cancer Elimination was co-hosted by the Bill & Melinda Gates Foundation with the Graça Machel Trust, gathering over 30 cervical cancer survivors, activists, and caregivers from across the African continent, Ireland and the U.S. The meeting wanted women to share their experiences and knowledge while looking for solutions to some of the unique problems faced by African women in the cervical cancer space. The women were also able to visit the cervical clinic inside Princess Marina Hospital where local women are screened and treated.

Speaking on behalf of the survivors, Nakawala-Mayond, who shared the stage with WHO Director Matshidiso Moeti, educator and humanitarian Graca Machel, and Botswana’s First Lady Neo Masisi, shared the challenges women face in the fight to eliminate cervical cancer as well as possible solutions, said: “No woman should die of cervical cancer, especially now that tools are available to curb the disease.”

She said equitable distribution and access to cervical cancer-related healthcare services should be available for women in Africa as it is key to driving the mission of saving lives and eliminating cervical cancer.

After the meeting, AllAfrica’s Nontobeko Mlambo caught up with Nakawala-Mayond to discuss her experiences during her cervical cancer journey, her challenges, and what led to her setting up the TEAL Sisters Foundation, the organisation she started after her successful treatment.

Why did you decide to start the organisation?

During treatment, I realised that there weren’t any cervical cancer advocates in my country whilst we had several advocating for breast cancer. This meant that there was a gap in information, coupled with lots of stigma hence the very high mortality rate from cervical cancer.

Our main and primary focus was initially cervical cancer but due to demand, we have incorporated all gynaecological cancers … including breast cancer. We advocate for the elimination of cervical cancer through awareness and creating demand for screening services, information, and regular screening of other cancers such as breast and prostate cancer.

How did you find out you had cervical cancer?

I was diagnosed in June of 2019 after my gynaecologist forced me to do a routine screening at her clinic because I’d never had one done before. In hindsight I did experience a few symptoms … So because I had very little information, I didn’t think it was cancer. I remember the day I was told that I had cervical cancer just like yesterday. My immediate thoughts were death and leaving my two daughters alone. I’ve never been so scared in my life. For 3 whole days, I never slept a wink. I literally saw the sun rise and set. I cried, blamed myself, blamed God, and even blamed my body for betraying me. I didn’t know how I was going to tell my partner, my kids, my family, and my friends. I didn’t know what lay ahead of me and how I was going to tackle it.

Fortunately, between diagnosis and the start of treatment was only 3 weeks, and before I could wrap my head around the diagnosis, I was done with treatment. I received 25 sessions of radiation, 5 sessions of chemotherapy, and 4 cycles of brachytherapy … that was the most painful part of the treatment and it was during these 4 cycles that I met and made friends with ladies who were being treated for cervical cancer. We formed a sisterhood and always encouraged each other. Unfortunately, we lost some along the way, especially those who had advanced disease. I was one of the few who had very early-stage cancer but we all went through the same protocol of treatment.

A week before I was to finish treatment I developed a very bad urinary tract infection and was hospitalised for almost a week. I remember how the people that visited me all walked in looking very sombre but I had them laughing and feeling better in no time. At that point, I had decided I was going to fight this disease, if not for my children, but for the women out there who needed to be saved and protected from this killer disease.

Because I was not sick except from the treatment side effects, I continued to work and to do radio every Sunday. That was my favourite time of the week. I got lost in the music and for the 4-hour shift, I’d forget I was a cancer patient. Nobody at the station knew until months after my treatment. I experienced lots of side effects but with a good diet, a positive mindset, and support, I managed them very well. I only told people about cancer when I decided to start the Facebook page to raise awareness. I finished my treatment end of September and started the page in January 2020. At first, I thought I’d only get about 50 to 100 women because of the stigma around the cancer, but by the end of 4 weeks, the page had over 130,000 women who were actively seeking information about prevention, screening, early detection, and treatment.

What kind of support does the TEAL Sisters Foundation offer to cervical cancer-positive people, survivors, and caregivers?

The foundation offers emotional, spiritual, psychosocial, and sometimes when available financial support. The foundation has a group of survivors who offer peer-to-peer counselling, especially to those with new and recent diagnoses. They also offer counselling to caregivers as well. Apart from this, we offer treatment support through buddy systems.

How does the organisation fight the stigma that some cervical cancer survivors face?

Stigma is a big issue that is culturally embedded in most communities be it the urban, peri-urban, or rural setups. The best way we have approached this is by using survivors such as myself because a lived experience has more chance of changing people’s mindsets than any other means. We also go out into communities for outreach programmes where we use community-based volunteers who spread the word and sometimes we use drama groups who dramatise the message in an entertaining way. We also do corporate visits and talk to members of staff. We use … literature which carries various messages from prevention, early detection, screening, symptoms, treatment, and survivorship.

What are some of the challenges faced by the women in communities where the TEAL Sisters Foundation works and how do you think they can overcome those challenges?

Some of the challenges or barriers that women face are stigma and for those that are married, some husbands do not allow them to go for screening because husbands believe that no one apart from them is supposed to look at their partners’ private parts. Sensitisation targeting the men and extended community comes in very handy in trying to sway the men’s attitudes and opinions surrounding cervical cancer. It is for this reason that most women choose to die in silence or self-medicate and/or visit herbalists for a cure. They shun … screening because the community will automatically think they are HIV-positive, as most people believe that only HIV-positive women suffer from cervical cancer.

What was it like participating in the Bill & Melinda Gates Foundation Survivors and Caregivers meeting and the WHO Regional Meeting side event?

The event provided an opportunity for survivors to get together and share their common experiences. It was a safe space for them to open up about their fears of going through cervical cancer, surviving it, and life after treatment. For me, this meeting made our voices as survivors count by amplifying our call for the elimination but most importantly … that we make the best advocates because we have walked the journey.

What support can the Zambian government or community at large offer the TEAL Sisters Foundation to fight cervical cancer?

The support that the TEAL Sisters Foundation needs in order for us to fight cervical cancer is first and foremost political will. We need our leaders to join hands with us in sensitising the communities about this cancer which is preventable and treated if caught early. We need opinion leaders especially women to join the clarion call. The foundation needs financial support especially if we are to reach the women in the most rural and hard to reach set us.

What have been some of the challenges you have faced with TEAL, and how have you overcome them?

The biggest challenges we have are mostly financial. However, we do organise fundraising events and we use that money to carry out our programmes.

What do you think governments across the African continent should be doing to intensify the fight against cervical cancer?

Governments across the African continent need to prioritise cancer care by equipping hospitals with cancer care services such as radiation, chemotherapy, scans, and trained and qualified personnel, and put in place systems to make sure that the machinery is well maintained to avoid treatment disruptions and improve treatment outcomes. Health is a human right and should be treated as such. 19 out of 20 countries with the highest burden of cervical cancer are in Africa. We need to change this like yesterday. We need all eligible girls between 9 and 14 to get the HPV vaccine so that they are protected from cervical cancer in the future because this is our first line of defense. We need good policies speaking to cancer care in the National Cancer Control Plans.

Since the start of the TEAL Sisters Foundation, what are you most proud of?

What I am most proud of is setting up Teal Sisters Lesotho. I look forward to expanding the footprint into other African countries. I am also proud of the fact we have been given a seat at the table and have contributed to the creation of information, education, and communication material for cervical cancer and also contributed to the current National Cancer Control Plan.

I’d like to urge all women to take charge of their health. Let us change our lifestyles in order for us to be healthy. Go for regular screening to prevent cervical cancer. If you are diagnosed with cervical cancer please remember that it’s not a sin and neither should you be ashamed. Reach out for help and you will find it. We need to stop women from dying from preventable diseases.

To the communities at large, do not stigmatise because cancer doesn’t choose race, color, or creed and tomorrow it may be you. Finally, make our survivorship count by equipping us to be agents of change in our various communities. We each have a role to play, we have the tools and the knowledge so let us join hands and together we will eliminate cervical cancer.

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