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Editors PickFeatures

‘Life after cancer’: Nigerian cancer survivors challenge taboos, push for better health care

Starrfm.com.gh By Starrfm.com.gh Published May 13, 2024
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Photo Credit: Courtesy of the World Health OrganizationWHO/Blink Media/Etinosa Yvonne
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Nigerian civil engineer Akwarandu Dozie said his work has always been his passion. But four years ago, he had to take an unexpected break from work when his health started to decline. 

Despite several hospital visits, doctors could not diagnose the cause of his stomach pain, weight loss and weakness. 

Eventually, exploratory surgery found a tumor.

“I was told there was no good news for me. And the bad news was that it was an advanced stage of colon cancer,” Dozie said.

In Nigeria, cancer survivors confront many myths and misconceptions about cancer. Some believe that Western medicine can not effectively treat cancer and will even make it worse. Others believe cancer is caused by witchcraft and or appears in the body as punishment for past sins. Still others believe that cancer is contagious. But cancer survivors like Dozie are leading the charge to raise awareness and improve outcomes.

Two years ago, Dozie founded the Nest of Hope advocacy and support group to demystify cancer. 

“The whole idea is just to help ourselves, get the proper information, manage our misery, to create awareness about cancer…we are using it also to talk about survivorship because there’s life after cancer treatment,” he said.

Cancer patients in Nigeria have limited access to the latest treatments and experimental protocols — even if they can afford them. And limited access to screening means later diagnoses and poorer outcomes.

In  Dozie’s case, the cancer spread to other parts of his body. But with the help of chemotherapy, doctors declared him cancer-free four years ago. Yet, staying healthy is expensive. He said his medication has increased nearly tenfold in the last two years. He spends upwards of $1,200 a month on medications. 

Dozie said he realized a lot of cancer patients were being misinformed both online, social media and offline. The cancer support group helps to keep everyone informed.

Fighting stigma, gathering data

Others have started groups of their own, such as Gloria Orji, who founded the support group Network of People Impacted by Cancer in Nigeria. 

Orji was diagnosed with stage two breast cancer in 2010.  She underwent chemotherapy, surgery and radiation, followed by five years of hormonal treatment and regular check-ups.

But in 2018, the cancer came back.

“Immediately the doctor disclosed it, my whole body froze. I couldn’t cry, I couldn’t talk, I couldn’t reason. In fact my life just stopped,” she said.

Every hour, cancer kills nearly 10 people in Nigeria — that’s about  80,000 annually. The actual number could be higher due to unreported cases. 

Orji said she’s back in treatment and hopes to finish soon. But navigating cancer has meant facing a great deal of social stigma. 

When she told her former boss about her cancer status, he cried out “Blood of Jesus!” and immediately stepped away from her, creating a large space between them, as if her cancer was contagious.

“So that’s the stigma,” she said.

Orji said some people believe her cancer is a kind of punishment or a death sentence, leading to fear and denial. This stigma often prevents people from seeking timely medical care or sharing their diagnosis with family and friends.

Orji said she had a profound realization about cancer while attending a cancer conference where the speakers presented on nearly every topic — except on cancer survivors. 

“So I grabbed the microphone and asked, ‘No data on survivorship?’ Does that mean there are no cancer survivors?” she said.

That question pushed her to talk more about her life after cancer. Without accurate data, she said, survivorship needs are underestimated — which leads to inadequate resources and policies. 

Dr. Tessy Ahmadu, head of the oncology department at the Federal Medical Center in Abuja, said a lack of data, research infrastructure and few specialists are a huge hurdle to care. 

There are less than 100 oncologists, radiation and clinical oncologists in the country for over 200 million people, she said.  “And this has caused a lot of pressure on oncologists — and even on the practice. So it is tough. Really tough.”

Equity and access to care

Most Nigerians also lack general health care protection. About 95% of the population lack health insurance. Only 5% in the formal sector and 3% in the informal sector have coverage through the National Health Insurance Scheme or private health insurance.

Dr. Joseph Enegela, founder of the African Diseases Prevention and Research Development Initiative, said most cancer-care challenges in Nigeria boil down to lack of investment. 

More than a decade ago, Nigeria signed on to the World Health Organization’s “Abuja Declaration,” which urged African governments to allocate at least 15% of their annual budgets to health care. But Engelea said Nigeria has never reached that goal. The 2024 budget allocates only 4.6% toward health. 

 “Let that money come out from the budget to serve the people,” he said. “Honestly, when you do not have a healthy population, there is no way you can grow economically, and that’s the simple truth,” he said. 

Policymakers have slowly started to recognize the important role of cancer survivors. 

Dr. Adamu Alhassan Umar, president of the Nigerian Cancer Society, said hearing directly from cancer survivors is a game-changer. 

“The cancer survivors, many of them had the experience of being abandoned by family members. Many of them had the experience of inappropriate diagnosis so they are in a better position to engage policymakers,” he said. 

The National Institute for Cancer Research and Treatment (NICRAT) was established less than a year ago to look at how to incorporate comprehensive cancer rehabilitation programs into cancer care, Umar said. 

Globally, advancements in cancer care such as targeted therapies, immunotherapy, and precision medicine are helping patients live longer than ever before — but not in Nigeria. 

Nigel James, an assistant professor of global health, epidemiology, and health policy at  the University of Richmond, Virginia, said he wants to see these life-saving innovations extended to Africa. 

“We really need to address these inequity issues as a matter of urgency. Pharmaceutical companies, the donor community, research and academia, all need to work together to create pricing models that make innovative treatments affordable and sustainable, so that low- and middle-income countries are not left behind,” he said.

Listening to patients

These advancements can’t come fast enough to Nigeria, survivor Gloria Orji said. But she stressed the need to care for the entire person — not just the body.

And that means changing attitudes among the doctors too.

“Doctors are becoming more conscious of the fact that they need to listen to patients. And that is making a difference,” she said.

Dozie also sees hope in the future of cancer care in Nigeria. 

“I hope that through my advocacy, in the next five years, the majority of Nigerians will understand that the battle against cancer can only be won when faith and medicine walk hand in hand.” 

Source: Ghana/Starrfm.com.gh/103.5FM/Ridwan Karim Dini-Osman 

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