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If you build it, they will come; The organisations transforming cancer care in Nigeria

By Ada Ezeokoli & Beti Baiye (Lead Writers)

In the story below, Nigeria Health Watch Graphics and Design Editor, Samuel Gada, shares his father’s cancer diagnosis and treatment journey:

“I’m sorry to tell you Mr Gada, but you have cancer.” Those eleven words changed the course of my life forever. It felt like a punch to the gut, taking out all reason and questioning the very fabric of my faith. When we left the doctor’s office with my mom and dad that morning at National Hospital, Abuja, on the 7th of February, 2011, we had absolutely no idea the journey of emotional and financial strain that awaited us.

Dad had a tumour growing on the side of his neck, and the doctor had diagnosed him with stage 3 Oropharyngel Carcinoma Cancer. At first, we questioned the veracity of the diagnosis and went from hospital to hospital following referrals from friends. No one wanted to do radiotherapy because of where the tumour was located, so chemo was the option we were given. We had begun making plans to seek care in Israel. In October 2011, we were referred to Wellington Hospital in Abuja as a last resort, and there we met Dr. Bello Abubakar who worked at the National Hospital, but was consulting at Wellington Hospital. He told us that doing surgery on the tumour would be risky and most doctors would not want to do surgery. He answered our many questions and was real with us.  

We found out Dad’s HMO plan would only pay for consultation, but not for treatment. I remember talking to my parents and the consultant about the length of the treatment and the cost. About a year after meeting Dr. Abubakar, Dad began his chemo treatment. He was meant to go for two sessions of chemo every month. Each session was N100,000 for the chemotherapy alone. Drugs were another N200,000 to N300,000 per session. Dad had to use his investments and savings to pay for his care, and after a while he had to get help from family, friends and complete strangers.

Shortly before his death, we paid N1.5 million for various drugs, bed stay and consultation expenses. He died on May 8th, 2014.

Nigeria’s NCDs burden is growing

The Gadas’ story illustrates the emotional and financial rollercoaster that often accompanies a cancer diagnosis for many in Nigeria. Cancer is one of several diseases classified as non-communicable diseases or NCDs. These include cardiovascular diseases, cancers, chronic respiratory diseases, diabetes and mental health disorders. They are the world’s biggest killers and have now been termed “a silent epidemic”.

Although communicable diseases remain the primary cause of death in Nigeria, the country is currently facing an increase in the burden of premature mortality from NCDs, estimated at 22%. According to the 2018 WHO country profile, NCDs accounted for an estimated 29% of all deaths in Nigeria with cardiovascular diseases as the primary cause of NCD-related death (11%) followed by cancers (4%), chronic respiratory diseases (2%) and diabetes (1%).

Alarmed by the increase in NCDs in Nigeria, in 2013, the Non-Communicable Disease Division of the Federal Ministry of Health developed a National Strategic Plan of Action On Prevention and Control of Non-Communicable Diseases. Its aim was to tackle the four major NCDs, namely, cardiovascular diseases, cancer, chronic respiratory diseases and diabetes, through an integrated multi-sectoral approach. The goal is to reduce the overall mortality rate of these killer diseases, to reduce the prevalence of insufficient physical activity, to halt the rise in the prevalence of diabetes, obesity and sickle cell disease, all by the year 2025.

Cancer’s alarming spread in Nigeria

Statistics as shared by the Global Cancer observatory (Globocan) shows that cancer is responsible for over 72,000 deaths in Nigeria every year. In 2018 alone, there were an estimated 115,950 new cases of cancer each year and 211,052 prevalent cases over a 5-year period. Breast, cervical and prostate cancers are the three most common types of cancers in Nigeria. Due to the dearth of data in Nigeria, the availability and quality of cancer data presented for Nigeria is poor.

Runcie Chidebe, Executive Director of cancer advocacy organisation, Project PinkBlue, says Nigeria urgently needs to put cancer as a national health priority. “For a disease that its incidence is over 100k every year and we have over 70k deaths every year, we really don’t need any other reason to see cancer as a national health priority,” he said. “Most of these cancers are undiagnosed, people just live with them and die with them. That also becomes a very serious issue. It is so unbelievable today that about 31k women die of breast cancer every day; 15 men die of prostate cancer every day and 29 women die of cervical cancer every single day. The challenge we are having in cancer control is that a lot of our political leaders have not been able to see cancer as an issue because it is not infectious. If cancer was like HIV, then we would have taken it serious.”

In 2018, a five-year National Cancer Control Plan was created as a launch pad to reduce the incidence and prevalence of cancer in Nigeria. The plan provides direction as to how the Ministry envisions cancer control efforts for the country in the next five years.

Chidebe, a member of the World Cancer Day advisory group, based in Geneva and hosted by the Union for International Cancer Control (UICC), says implementation of Nigeria’s plan is not moving fast enough. “The plan stipulated that Nigeria needs 60 billion naira only to fight cancer,” he said. “Part of the idea of that plan is to have what we call national screening, even if we can start from a pilot of national breast screening, whereby once anyone walks into a health facility, she will be screened instantly. We will be taught how to do that, same with cervical and prostate cancer. Those are the three cancers that we know are affecting most of our population. We are two years away from 2022 and that plan is just on paper. That is really worrisome. If we don’t make cancer control a priority, you’ll be surprised at the kind of cancer deaths that will happen in this country in the next 5 years.”

Dr. Zainab Bagudu, MD/CEO Medicaid Cancer Foundation, says access to screening and diagnostic services is the most critical aspect of cancer care and the lack of equitable access to these services remains the reason why mortality rates for cancer in Nigeria and Sub Saharan Africa are alarmingly high, when compared to other countries. “We are identifying the majority of patients with cancer at stages 3 and 4, drastically reducing successful treatment outcomes,” she said. Chidebe adds that “Practically over 80% of people diagnosed with cancer will eventually die. What does that mean to us as a nation? We are losing our huge human resources.”

There are huge gaps that need to be filled if the National Cancer Control Plan is to be actualised, and the Nigerian government cannot do it alone. Several organisations are working to ensure that cancer care in Nigeria is accessible, is quality and is increasingly affordable.

NSIA: Leveraging private sector funds to transform cancer care in Nigeria

The Nigeria Sovereign Investment Authority (NSIA) focuses on key sectors of the economy as part of a broader strategic plan to stimulate growth and development. Their model looks to bring in private sector funding to meet the infrastructure gaps in healthcare, to improve health outcomes.

Managing Director and Chief Executive Officer Mr. Uche Orji said the NSIA zeroed in on cancer care as part of a broader investment strategy. “Our strategy is to target areas that have been subject to medical tourism, where we believe Nigeria should be able to handle domestically,” he said, adding, “Oncology is one of them, cardiology, renal care, and more lately, high end surgeries. These are the four areas where you see Nigerians spend money going abroad for treatment.”

The NSIA began its foray into cancer care investment with a partnership with the Lagos University Teaching Hospital (LUTH). They took over LUTH’s oncology department, rebuilt it, and expanded it as part of a “build, operate and transfer” partnership model.  “As it stands today, we own it 100 percent, but the idea is when we’ve earned back our capital and returns we will transfer it back to LUTH,” Orji said.

NSIA’s investment goes beyond the infrastructure, to a partnership with the existing oncology department of LUTH. Photo source: NSIA

The investment goes beyond the infrastructure, to a partnership with the existing oncology department of LUTH. “We have the core oncologists we brought in to run the place, but it’s all working in sync with the existing oncologists in LUTH and all their radiotherapists,” Orji said. “So, it’s a way for us to provide the necessary input for us to develop the oncology department at LUTH, train people who are at LUTH, and then be able to expand from there.”

The new cancer centre is called the NSIA-LUTH Cancer Centre, or NLCC, co-owned by the partners until the NSIA recoups its investment. From installing top of the line equipment to bringing in Nigerian experts from the diaspora to pass along knowledge, the NLCC is designed to bring high quality, accessible cancer care closer to Nigerians.  

To have this type of centre, for me, is really important because then people can go somewhere,” Orji said. “And its not just about affordability. There are people who can afford it but can’t get a visa. There are people who can afford it and get a visa but can’t afford to go with a family member to look after them and cook for them… this is expensive stuff. So that’s why we built it here and we think it has impacted. The fact that there is no need to go to India, no need to go to Germany or to go to the United Kingdom, or go to Israel, or Dubai. Go to NLCC. There is nothing they have in those places, we do not have here.”

The NLCC is designed to bring high quality, accessible cancer care closer to Nigerians. Photo source: NSIA

The former oncology unit was designed to take about 80 patients a day, he said, but the plan is to expand it to take up to 300 patients a day. Orji said today the centre sees between 90 to 100 patients daily, and this is without marketing the centre’s services.

Which brings up the issue of cost. Cancer care is expensive and the majority of Nigerians cannot afford to pay for it. Orji said the NSIA paid attention to this. “We are only charging slightly more than what LUTH was charging before with the equipment that didn’t work. I would probably say it’s under 15% more than what people were paying earlier,” he said. “So here you have equipment that works, on time, on record and it is world class equipment. So, you pay more but not too much more, not double. It is still by far one of the cheapest treatments, for the equipment that we have, in the world.”

And for the NSIA, this is the first of many such partnerships. The company is planning to do co-investments with other teaching hospitals and Federal medical centres, and currently has MOUs with 13 of them, Orji said.  “We’ve done diagnostics and radiotherapy in Kano and Umuahia. This year we will be doing a few more of what we call centres for advancement, because we need a centre that does not only cancer, but renal and cardiology,” he said.

They also have plans for a fund to help address the cost of cancer care. “This year one of the things I’ve set as an objective is to raise an investment fund for health care,” Orji said, adding that this would help them be able to develop more than 3 centres at the same time. “I’d like to see a situation where I can do maybe 3,4,5,6 centres all at once. We’re going to staff up and build a lot of internal capacity of staff who can actually deliver on this,” he said.

Don’t build it and walk away

For Orji, investing in cancer care is more than just providing the right infrastructure. “When you build it, don’t just build it, put in equipment and walk away,” he said. “You have to help manage it, you have to keep putting working capital into it, until it stabilises. There’s a place in this country that if I take you to, the machines that were put there 7-8 years ago, nothing like it in Africa, but it’s there. nobody is operating it, it is just packed up; but that’s not how to build a medical centre. So, if you’re going to build one, think holistically.

He says he wants to see more investment into cancer care. “The NLCC Centre at LUTH cost 10 million dollars. Ten million dollars for certain corporations is not really that difficult to spend. I would love to see every teaching hospital have a world class cancer centre like we have, and it doesn’t have to line up behind NSIA to do it,” he said.

Fighting to Beat Cancer in Nigeria is a concerted, multipronged effort

Dr. Oge Ilegbune, Head of Strategy, Development and Outreach at Lakeshore Cancer Center in Lagos agrees that partnerships are key in order to provide better cancer care in Nigeria. She says this has been one of the successes of the centre. “We have in partnership organised and implemented a Pilot Health Practitioners’ Cancer Overview, Screening and Referral Workshop in 2019 aimed at flagging up the challenges at the Primary care level and addressing the solutions. We are applying for various funding and grants to upscale this training,” she said, adding that having transparent and open discussions about their treatment modalities has helped built trust and confidence which has resulted in increasing referrals from across the country and globally.

Project Pink Blue advocates for better cancer-related policies in Nigeria.

In 2016 and 2017, we advocated for the government to set up a national institute on cancer research and treatment,” Chidebe said. The bill was passed and signed in December 2018, but is yet to be gazetted. “Until it is gazetted by the secretary to the federal government, it will not be budgeted for,” he said, adding that this was a major win for cancer survivors. He said their advocacy has also resulted in the NHIS including cancer in some of the essential medicine list.

Medicaid Cancer Foundation helps raise funding for cancer patients. “We have relied primarily on the generous donations of a few individuals. In the last few years, we have recorded an increase in donations from corporate partners in Nigeria,” Bagudu said, adding that raising funds has also been one of their biggest challenges.

The Pink Oak Cancer Trust focuses on domestic resource mobilisation to improve access to cancer care through funding the treatment of eligible patients. Pink Oak conducts crowdfunding and targeted engagement of individual and corporate donors. “The foundation supported the treatment of a total of 25 cancer patients with 19 of them recruited in 2019. This is only a drop of water into an ocean,” Dr Laz Ude Eze, Executive Director at Pink Oak Trust said.

Does Nigeria have a plan to fund Cancer Care?

There is growing advocacy for the government to provide viable options to fund cancer in Nigeria. Funding remains one of the most significant challenges to access, and the cost of cancer care in or outside Nigeria is out of reach for most Nigerians.

For Orji and NSIA, the need for an endowment fund for cancer care is crystal. “There are still people out there who can’t afford this, and I’d like to see some endowment fund put together to help those people. That would be helpful. We are going to have to set that up, but there will be opportunity to donate into a Fund that will help people,” he said.  

Cancer care funding is expensive and the majority of Nigerians cannot afford to pay for the care. Photo source: NSIA

The Nigerian government may have heard Orji’s concerns, as it seems to be already working on a funding mechanism for cancer care. Chidebe noted that another win for Project PinkBlue is “what we call catastrophic health financing.”

He says that in 2018, advocates pushed for a funding mechanism, an investment meant to support diseases that are catastrophic, like cancer, diabetes and cardiovascular disease.  “In 2019, catastrophic health financing was approved by the national assembly but it was not included in the 2019 budget. But as I speak to you right now, the 2020 budget has catastrophic health financing in it. It is a good opportunity to really support people who have all these health issues,” he said.  

And it is support that could not be coming at a better time. As the world commemorates World Cancer Day 2020, with the theme #IAmAndIWill, governments, individuals and organisations are making commitments to advocate, to invest, to speak up for better cancer care. It is important that the Nigerian government makes this fund available to ensure that those living with cancer in Nigeria do not have to fight alone.

To anyone recently diagnosed with cancer, Ijeoma Onumegbu, a survivor who was diagnosed with breast cancer two years ago, has this to say:

A Cancer Survivor’s Story

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