‘Quality of life is never factored into cancer care in Nigeria’
Ebunoluwa Anozie is the President and Chief Executive Officer of Care Organisation Public Enlightenment (COPE), a breast cancer awareness network set up in 1995 and committed to reducing the mortality rate of breast cancer through Screening, Counseling, Referrals, Education, Enlightenment and Nurturing (SCREEN).
On the other hand, Ngozi Ejedimu is a lawyer, entrepreneur, breast cancer advocate and survivor. She manages @whatcancernaija on Instagram and her sole mission is to ensure women get well informed to be proactive about their breasts and make informed decisions. Using her journey as a survivor to change the narrative and fear behind the disease, as well as champion the cause for patient experience in the management of breast cancer, she founded The Judah Foundation for Breast Cancer, dedicated to supporting women navigate the journey and life after breast cancer.
In this interview with TOBI AWODIPE as part of the 2021 Breast Cancer Awareness Month, both women talked about the challenges surrounding breast cancer treatment in Nigeria, going beyond screening and awareness and how the country’s poor healthcare contributes to rising mortality rate.
‘I Miss My Cleavage At Times’
Five years after your recovery, how has your journey to this point been like for you?
IT has been quite interesting up to this point; from discovering that life after breast cancer is a different ball game, when you are receiving treatment, down to having to deal with people I know dying and then top it off with the fact that the health system is weird. I’m basically my own doctor; I’m always reading and researching, not out of fear, but because of what I do and I don’t have a choice.
I miss my cleavage at times; don’t always understand my mood swings. But I am happy and thankful to be alive. Did I mention side effects? The journey has been hard, lonely, challenging, rewarding, confusing and annoying, but splashed with lots of laughter, perseverance, gratitude and resilience.
Would you say there is better awareness of breast cancer in Nigeria today?
There is more noise about breast cancer awareness now, probably because it is a moneymaking scheme for NGO’s or maybe because young women below 40 are dying. But the question is, do people understand it? Breast cancer is automatically associated with death and this is why a lot of women refuse to even have any discussions around the word ‘cancer’.
You know there are different dimensions to health literacy. Focus is more on screening and early detection, with no rooms for other variables. Breast health should be the starting point. There is no point making noise about breast cancer and then focusing on only one aspect of it. Screening doesn’t mean survival; it doesn’t sort out mental health issues or metastatic breast cancer. The actions when it comes to breast cancer awareness are not enough unfortunately.
What factors would you say hinder breast cancer treatment in Nigeria?
Financial toxicity, misinformation, no options for counselling, poor knowledge amongst healthcare workers, poor proximity to good medical facilities and doctors treating cancer who have no business doing so. If it would interest you, a lot of women are treated by non-oncologists. We don’t have a social care package that allows for a woman to be guided through the journey, so in Nigeria, you might be rich and educated and still die, because you refused treatment based on something you heard or were told. Lastly, some women never know they have breast cancer till it’s too late.
Despite the rising number of cases and mortality rate yearly, Nigeria still lacks treatment centers and equipment even in major cities. Why does this problem persist and how does it affect patient care?
Greed and the fact that people are put into roles they don’t understand are the major reason the problem still exists. Nigeria doesn’t understand the gravity of cancer and till it does, people will keep dying. Why can’t we have a knowledge exchange programme where we invite doctors from overseas to come and train us and send our doctors there? The equipment is expensive, but not something Nigeria can’t afford. It’s not just a priority and those in power simply go abroad.
Cancer is not a problem that affects everyone; we saw the speed at which Ebola and COVID-19 were tackled, and that speaks volumes, doesn’t it? It affects patient care, because there are too many patients, not enough doctors, hospitals or equipment; quality of life is never factored into cancer care in Nigeria.
How best can we get cancer treatment to be patient-centered in Nigeria?
Research! Understand the disease, the patients, the environment and stop using data from abroad. Involve patients in the process; patient experience is not used as a tool for learning and improvement in Nigeria. Unfortunately, because the ratio of doctor to patients in Nigeria is appalling, it might be a bit difficult to achieve patient centred care, because patients in Nigeria are scared of their doctors and end up not asking questions or the doctor gets angry when it seems like you have challenged an opinion.
Besides, they don’t have the time to focus on patients; they focus instead on the disease. Remember patient centred care should involve care that is focused on the patient and this should factor individual patient preferences, needs and values. The patient should be able to comment, ask questions and even complain.
How many oncologists do we have in Nigeria? Do we have social workers attached to hospitals? Patient navigators?
You started a breast cancer foundation to help other women, what have been your major challenges and concerns?
My biggest challenges are finances, technology and manpower. I would like to do more with technology. There also seems to be a cancer clique in Nigeria made up of NGO’s, which has been difficult to break into. Advocacy is different for me, because I have had cancer and went through treatment and lost friends as well. I have given up and have just decided to do what I can do with what I have.
Now, this is the one that will surprise you, but breast cancer patients and survivors can be very lazy; they tend to swallow information hook, line and sinker without making an effort to do any research. The women are the biggest problems to themselves; I shudder at the things I hear daily. My concern is that there should be a process for releasing these women back into the world after treatment and there isn’t one. WhatsApp groups are set up with no form of control, so how do you filter the kind of information they are getting?
There are issues with body image, getting breast forms/prosthesis, mastectomy bras, understanding aftercare plan, nutrition and so on. I would love to get a building that will serve as hub for breast cancer activities from diagnosis to aftercare. Can’t let too much out of the bag, but I’m looking for people and organisations to partner with.
Do factors like religion, culture and social norms play a part in diagnosis and treatment?
All three play major roles, but again, it depends on the individual. I hear churches don’t like to even encourage breast cancer awareness talks. Let’s tackle the issues one by one: Religion: religious leaders are not doctors, they should know their limits, they have contributed to the deaths of a lot of women. Culture, people think cancer is a white man’s disease, others think you can “catch’ it, there is also superstitions, so don’t talk about it or think about it; don’t do anything so it doesn’t happen to you.
Social norms are just people recycling stuff they have heard without doing due diligence; you know bad news travels faster and gets more traction and social media and the internet are not helping. At the end of the day, no one can force the woman to take a decision; the prayer is the decision should be in her best interest. You will contribute money for a woman to go to the hospital for treatment and she will opt for traditional medicine.
Stigma and wrong diagnosis is still something many women deal with, how are you helping to fight this?
I have actually posted pictures of myself baring my mastectomy scar just to encourage women to seek help and get treatment. My love for reading and research gives me tools with which I seek information that I dish out daily, even when it feels like all I do is talk about breast cancer, knowledge is power and my experience is an added advantage. The amount of information I have now, I didn’t have it five years ago, because I was a newbie who didn’t know more than two people who had breast cancer. I fight with words, pictures and storytelling. As I get more funding and help, I will be able to do more. My aim is to get women to be more proactive about their health and stigma is all in the head.
You started Breaking Through The Silence to mark the Breast Cancer Awareness Month, what led you to do this?
To be honest, I had been feeling burnt out lately, so didn’t have any plans for breast cancer awareness month and wasn’t in the mood to put myself under pressure. But then, I saw silence is not an option; I went to bed and Breaking through the silence just popped up. This is why issues like early detection are no longer enough; it’s Stage 4 breast cancer that kills. Most women will ignore signs and symptoms of breast cancer, especially when it doesn’t come with pain.
Mammograms don’t detect breast cancer when you have dense breasts; breast health awareness is important. A lot of people really don’t care about survivors; it can be very lonely.
How can the government go beyond lip service and platitudes to provide better access to treatment and improved medical care for cancer patients?
They should start with improving medical facilities, especially primary health centres, because there is actually one in every area, but most of them are not functioning optimally. Encourage doctors’ exchange programmes so that there is knowledge exchange; we don’t have enough to use to fight cancer in Nigeria. Get survivors to be part of the process and put them in strategic roles; they don’t realise they are major stakeholders.
Invest in the health care sector, anything that isn’t nurtured dies. Put the right people in the right roles. Corruption, greed and ego continue to boost lip service. To provide better access to treatment and improve medical care for cancer care, invest in doctors, equipment, facilities, knowledge and research. We don’t have a central database, so basically, no cancer registry in Nigeria. Data is collected in silos; we need data as well for improvements to happen.
‘We Are Concerned That As Women, We Do Not Take Our Health Issues Seriously’
Years after establishing COPE, would you say the journey has become easier?
CAN I be honest with you? It has been an absolute roller coaster. There have been lots of lows and highs, but we are grateful for how far we have come. We’ve worked really hard and sacrificed so much. I remember when we first started in 1995; people thought I was crazy for talking about breast cancer. However, I’m really proud that over the past 26 years, we have remained committed to our vision of serving as a comprehensive breast cancer resource provider for Nigerian women, survivors and caregivers.
We have also been dedicated in our mission to reducing the mortality rate of breast cancer by ensuring that women have no reason to deny themselves access to basic healthcare, in particular Breast Ultrasound Scan Screening and Mammogram. As such, so many lives have been positively impacted and a lot of women have become better health advocates for themselves and loved ones. It’s been a joy to witness.
This incredible 26 year journey is not possible without the leadership of our board members and the support of our partners, Variant Advisory, Leadway Assurance, Union Bank, Access Bank, Hard Rock Café, Citibank, EkoFM 87.9FM, Cadbury, Pfizer, Ford Foundation, Ashoka, UBA, Lekan Ogunbanwo, UACN, ASHOKA, Yomi Opakule, Juwon Osibanjo, members of my family and friends. We are also grateful to the Lagos State Ministry of Health, COWLSO, and former first ladies of Lagos State, Oluremi Tinubu and Abimbola Fashola who keyed into our mission wholeheartedly.
Would you say there is now greater awareness of breast cancer in Nigeria?
Absolutely, we now have all hands on deck as we continue to champion and stress the importance of awareness. As I earlier explained, more organisations have joined in the fight against this disease by preaching the importance of regular monthly breast self-examination, breast ultrasound scan screening, which has no age restriction, mammogram for women over the age of 40 and MRI.
After all these years, what remains the greatest obstacle(s) to treatment in Nigeria?
The greatest obstacle(s) to breast cancer treatments in Nigeria are multifaceted. I am certain you are aware that breast cancer is more prevalent in developed countries than developing countries. However, the mortality rate is higher in developing countries. On one hand, we have “self-factors.” Lack of awareness ─ or should I say our nonchalant attitude to do the needful ─ in addition to illiteracy, fear, shame, unhealthy lifestyles, harmful religious beliefs, and listening to societal pressures are major obstacles to breast cancer treatment in Nigeria.
On the other hand, there are government factors. We have been persistent in encouraging the government to assist in reducing the mortality rate by constructing six Standard Comprehensive cancer centers in the six geo-political zones. Thankfully, we have a cancer center, NSIA, at LUTH and a few private hospitals, but they’re still above the reach of the average Nigerian.
Finally, we unfortunately have a broken healthcare system and inadequate healthcare insurance models for patients and cancer patients in general. There is the added issue of inadequate medical tools to aid diagnosis and treatment, justifiable persistent strikes by doctors and the never-ending brain drain of medical professionals. It’s truly troubling. The lack of finance to access adequate treatment without a comprehensive health insurance scheme or policy for cancer patients, bearing in mind that cancer treatment is expensive, are ever-present obstacles that need to be addressed.
Despite the rising number of cases yearly, Nigeria still lacks treatment centers, why does this persist and how can the government step up?
You may call it a lack of political will; the government can step up by doing the needful. One doesn’t want to sound like a broken record, but there is an urgent need for a total overhauling of our healthcare system. Not everyone has the luxury of embarking on health tourism.
Nigeria has four functional cancer centers for a population of over two hundred million and ninety clinical oncologists. This simply means that we have one oncology doctor to 1,100 cancer patients. In the midst of this disheartening reality, we are dealing with the persistent brain drain of our brilliant medical professionals who become outstanding outside our shores. There is fire on the mountain.
Do you think the country’s poor healthcare system contributes to the mortality rate of patients in any way?
Absolutely! You have no idea how helpless our doctors are. Brilliant and committed with substandard tools, and the working conditions leave much to be desired. You also have hospitals that are unable to cater to the needs of breast cancer patients. We need functional cancer treatment facilities across the country. We also need innovative healthcare insurance/financing models. I’m aware that the National Health Insurance Scheme (NHIS) now covers some cancer treatment, but we need a comprehensive health insurance scheme that allows patients receive quality at subsidised rate.
As you know, breast cancer treatment and cancer treatment in general is expensive. A lot of people who cannot afford the treatment, often sadly give up and decide that it’s better to die than run around trying to pool together financial resources. By the time they are able to get the money required, a lot of times, the cancer has progressed, requiring additional funds for treatment.
As an organisation, what have been your major challenges and concerns?
We are concerned that as women, we do not take our health issues seriously. For example, data from our regular screening initiatives has shown us that roughly 1 in 12 women is expected to be diagnosed with breast cancer and the majority of cases occur in premenopausal women. In addition, 1 out of 100 men will have breast cancer. We thus urge women to take their health seriously by availing themselves of regular screenings.
Women must understand that when they do not prioritize their health, it impacts their ability to confidently realise their ambition, pursue their goals and contribute to the health and productivity of their families, communities and country. We keep on emphasising the importance of being proactive rather than reactive.
As a non-profit, our major challenge is funding. We are committed to doing so much more to reduce the mortality rate of breast cancer through screenings and campaigns across the country as well as enhancing the quality of life for breast cancer survivors, but all these require money. Right now, we’re looking to raise funds to purchase a mobile breast screening van so we can reach more women in Nigeria on a larger scale. We also want to own our permanent building so we’re able to accommodate the growing needs of survivors and caregivers and university students who use our library. We need all hands on deck and are calling on well-meaning Nigerians to help us achieve these goals.
Do factors like religion, culture and social norms play a part in diagnosis and treatment?
Certainly! Religion, culture and social norms play a part in diagnosis and treatment. Wisdom is God’s divine gift, which is why you should shine your eyes. Do not be gullible. It is important to have faith, but there is also a reason we have doctors who can help you understand your diagnosis and recommend treatment you should take to give yourself a strong fighting chance. Faith and science work hand in hand.
Finally, please don’t let what will people say get in the way of doing what is best for you; you only have one life to live.
Stigma is still something many women deal with, how are you using your organization to fight this?
At C.O.P.E, we nurture our support group members to regain their self-esteem and confidence by equipping them with the necessary tools to live a fulfilled new normal life. We provide counseling services, lectures by medical professionals and skill acquisition trainings. Through our support group, they gain strength from each other knowing for a fact that having breast cancer does not make you less of a woman; it does not define whom you are.
The inspiring thing about it all is that they refer to themselves as One Nation. There are a lot of breast cancer survivors all around the world living their best lives. I see stigmatisation as ignorance; I encourage survivors to come out and talk about it to support women who are still in denial, which they gladly do. My Vice-President is a 23-year survivor, an achiever who has a fantastic support system and is living her best life. She encourages many newly diagnosed breast cancer survivors. Visit www.copebreastcancer.org for more information on how to join our support group.
Many people give up hope when they hear they have cancer. When they first come to you, how do you restore hope to them?
It is normal for any human being to feel vulnerable when cancer is diagnosed. Some people think breast cancer is a death sentence, which is not so in some cases. It is not in all cases that diagnosis of breast cancer means death; there are many encouraging prognosis. I said earlier that regular screening is of the essence, which helps in catching it early. When it’s caught early and it’s not invasive, survival rate is higher.
Treatment is not one size fits all; it’s an individual disease. It could be hereditary, but hereditary factor is less than 10 per cent. Most people who have it do not have it in the family. We encourage them to be positive and not have a defeatist approach to treatment. Our minds are very powerful, so we remind them to harness their positive thoughts whenever they feel overwhelmed, scared or discouraged, which is inevitable. We also remind them to do the needful by getting treatment, a critical complement to their faith and prayers for permanent healing and good health.
How can government and private bodies help more in terms of better access to treatment and improved medical care?
This is a tough one. The most effective hurdle is to have square pegs in square holes. We have the wherewithal to make our healthcare system work if we are determined to change the narrative. Our government, private organisations and NGOs can form a tripartite relationship to reduce the mortality rate of breast cancer by offering women free access to breast screening in order to catch cancer early which can help one’s prognosis.
As earlier discussed, the NHIS should be totally overhauled to accommodate cancer patients. Clinical trials should also be encouraged and cancer medications should be subsided and not for a privileged few. We need to have an effective cancer registry for a robust database. I guess all these are achievable while we need our women to be proactive by going for regular screening.