Each day, nearly 28 women die from cervical cancer in Nigeria. Angela Akumuo, my sister-in law, was one of them in the summer of 2021. She was 53 years old. Her death, like those of many women who continue to die from cervical cancer in Nigeria and globally, could have been prevented. It was also discovered late. She lived in pain for years, and died within 3 months of finally opening up about her illness. There are so many effective evidence-based tools to prevent, diagnose or treat cervical cancer. Research too, with the field of dissemination and implementation science, my chosen field of study. Yet, why are women, like my sister in-law, in the prime of their lives, still dying from cervical cancer in Africa?
Look at the state of cervical cancer in Nigeria and many other African countries and you’ll understand. With an estimated population of 206 million individuals, Nigeria has over 56 million women aged 15 years and above who are at risk of developing cervical cancer. Most cases of cervical cancer are caused by human papillomavirus, with 67% attributed to HPV 16 and 18. As a result, the government recommends screening for cervical cancer from aged 30. Young girls and women are recommended to get vaccinated as well from age 9. Yet less that 10% of eligible women are screened and 14% of girls are vaccinated. Is it any wonder that cervical cancer remains the second most common cancer among women in Nigeria, also one of the most preventable?
In 2020, nearly three years ago, the World Health Organization (WHO) and 194 countries, pledged for the first time to eliminate cervical cancer by pursing three key steps: vaccination, screening and treatment. A recent costing exercise by WHO for the Nigerian government’s strategic plan on prevention and control of cervical cancer estimated that $18.1 million will be needed to fully immunize Nigerian girls at $3.98 per girl aged 9-13 years, $919 million will be needed to provide 24.8 million screening services and 2.2 million pre-cancer treatments, while $59 million will be required for cancer diagnosis, treatment and palliative care. Right now, Nigeria dedicates 5.75 percent of its budget to health with about N81 billion naira (roughly $100 million dollars) to health care services, all of which are insufficient to help the country reach its global goals for cervical cancer elimination by 2030. The cost of vaccination, screening and treatment remains an obstacle for many Nigerian women and girls. So, it’s no surprise then that Nigerian researchers and key stakeholders are turning back to Nigerians themselves to find innovative ways to lead the national response to eliminate cervical cancer.
Enter For girls and women by girls and women. This new crowdsourcing program led by myself and researchers at the Nigerian Institute of Medical Research led by Dr. Oliver Ezechi and the University of North Carolina, Chapel Hill, led by Dr. Joseph Tucker, is the latest from our, for youth by youth group, that has spent the past five years working to promote HIV self-testing with Nigerian youths themselves using crowdsourcing open calls, 48-hours designathons, month-long innovation boot camps and subsequent implementation of finalist programs in community settings. Crowdsourcing allows large number of people to become involved and engaged in developing solutions to health issues. Our program, now in its fifth year, boldly displays how Nigerian youth themselves can be partners and leaders with HIV prevention interventions and not just beneficiaries of interventions designed by researchers alone. Interventions created by the group, has led to an increase in HIV self-testing from 29% at baseline to 90% at 3 months follow.
We are striving to repeat the same success but this time with HPV vaccination among girls and HPV screening among their mothers or female caregivers. We know that the thought of cervical cancer may strike fear in people’s heart, producing a deep sense of powerlessness. But it is possible to act against it by partnering with us to lead the design and implementation of HPV campaigns, particularly HPV vaccination of young girls and HPV screening of eligible women. Our crowdsourcing open calls will be launched in Nigeria this January and it is our hope that through our program goals, Nigerian girls and women can become prime leaders in designing, implementing and evaluating interventions that increase uptake of HPV vaccinations and HPV screening, while eliminating cervical cancer as we know it.
Angela Akunmo may have died from a disease so preventable. However, through the launch of the crowdsourcing open calls for HPV campaigns for girls and women by girls and women, her death will not be in vain.
I have always loved Langston Hughes poem, ‘Dreams.’ They personify my mood these days. My story is one of dreams. I shared that during a presentation yesterday at NYU. I have this presentation where I go from dreams to ambition to dips and rising and back to dreams. It’s my take on the programmatic focus of my research.
I live to sustain evidence-based effective research in limited resource settings. It’s an audacious dream, many people describe as vexing or least understood outcome of research. I beg to differ. It isn’t vexing to me. Never has been. I have written multiple grants on it. They failed. The field was not ready then. They still may not be, I said during my presentation yesterday. But I can dream and when I do, I am reminded of the words of Langston Hughes:
Hold fast to dreams
For if dreams die
Life is a broken-winged bird
That cannot fly.
Hold fast to dreams
For when dreams go
Life is a barren field
Frozen with snow.
While we are at it, today I did the unthinkable. I have always dreamed of being a children picture book author, so I pitched a story, inspired by dreams and gazing out to a night full of brilliant, radiant stars. It’s the annual picture book pitch fest on Twitter and I figured I have nothing to lose. I also finished the first completed draft of the most brutal grant I have every written today. Grants, stories, one thing for sure, I am holding on to my dreams.
Of what use are grants? If you think about this deeply, you will discover that it’s use are infinite. Of course some use it for their research. Some to propel their careers. I have always believed they can be used to tell stories.
I remember the very first grant I wrote over 14 years ago. I was a doctoral student then at Penn State and I was very keen on understanding how to succeed as one. I was working as a graduate assistant with Dr. Rhonda Belue and I asked her that question in the fall semester of my first year. She noted 2 things, write papers, get grants. Looking back, my mind latched on to both things and proceeded to make sense of grad school. I asked to see sample grants and Rhonda connected me to a doctoral student, Brandi who graciously shared her F-31 doctoral award. Brandi also introduced me to another doctoral student Melissa, who also shared her F-31 award. So from the beginning, seeing examples of what types of grants I could write has been critical for me.
My doctoral advisor, Dr. Collins Airhihenbuwa, also had a grant and I was mesmerized by how it allowed us to work in South Africa to understand HIV stigma first hand. It also allowed me to write a paper with guidance from the research team. Dr. Rhonda introduced me to Dr. Gbenga Ogedegbe and he had an R03 grant in Nigeria focused on hypertension. Together, I learnt firsthand what it takes to get successful global health grants focused on doing what you love. They would both ignite my passion and vision for doing great work that impacts lives in global settings I call home.
Also, I took a qualitative class focused on teaching aspects of grant writing. This was my first actual foray into grant writing. Yes, it was with esteemed Nursing professors who taught the art of writing grant but from a qualitative research perspective. I was in awe. They taught me first the meaning of storytelling with grants. Qualitative research will do that to you. Make you understand first the stories you hope to tell, whether is through a paper or in this case grants. We were taught everything about qualitative research and told we could turn our ideas into funded grants. I did. I spent that semester learning about ethnography and proceeded to write a grant focused on how I would use ethnography to understand child malaria in Nigeria. I was born in Nigeria and I figured if I would do research let it be at home and with something I knew first hand, from experience. Malaria was ingrained in my head from child hood and I figured then that if I am going to change the world, we’ll why not begin with malaria and yes using ethnography. I gathered all the documents required using Brandi and Melissa’s example F-31 as a guide. Then used my ethnography research paper on malaria as my entry point for research. I was going to work under esteemed researchers focused on malaria in Nigeria, like Dr. Mrs Falade at the University of Ibadan and my doctoral advisor would guide me every step of the way as I made deep understanding as to why child malaria persisted using culture and ethnography as a lens. I was ambitious and my ambition for being among the first to end child malaria gave me the confidence to submit an F-31 grant focused on using ethnography to understand child malaria in NIGERIa. It was rejected.
The second most important thing I learned from this first experience, was feedback. Not from those that know you, but strangers who only care about what you propose to do. They taught the value and significance of the art of feedback. So alongside beginning first with storytelling as grants thanks to my qualitative teachers, I learnt the importance of feedback from this experience. I took it all in, continued to work on my dissertation and made the choice to revise and resubmit the grant. I was in my 3rd year or so and technically with a year left in doctoral school. But I revised not with a desire to use it in my doctoral work but to gather more feedback just in case I failed again. I expected to use that feedback to continue to perfect my grant even upon graduation. I buckled up for a long journey with grants. The second version was revised and this time rather than using ethnography, I asked to gain skills in mixed methods research. It was funded and this began my journey towards becoming a grant writer.
There are very few of us in academia. It has also taken me years to see myself as one. Yet grant writing like music, or poetry is an art. Of course the science matters. You need tight science and rigorous review of research, but you also need storytelling and mastering the art of persuasion and persistence for that story you hope to tell one day. Academia did not prepare many people for storytelling as grant writing. I figured it out my way. I benefited from teachers and mentors whose life work is grounded in stories and culture and anti-racism and yes all of that combined is the reason I call myself a grant writer today. Grants for me are stories. They have always been and will continue to be stories. Reviewers may reject them. In fact most of my stories, including an actual grant on storytelling have been rejected. But I am focused on using the oppressors language for good.
In the words of Lorraine Hansberry, my dreams with grants as stories remains largely outside myself. And I am happy to keep dreaming in this way, to keep living my dream. Not for a career or to keep up with anything. But to work freely and do the things I want to do. Becoming a grant writer focused on telling stories are the things dreams are made off. To be at the cusp of the work that awaits me keeps me grateful still to so many and God. Nothing but grace personifies my life’s work. I can’t wait to start the semester teaching what I mean by grants as stories. Teaching too, why failure is always an option. Teaching the art of feedback. Teaching students to simply do as Lorraine Hansberry asks and ‘write as they will,’ what they know about their idea, what they think it ought to be and must be if their stories about their ideas are to last. I intend to teach grant writing as writing stories to a point. Writing about people and stories begging for their attention and funding. We all need the art of grants as stories. I intend to perfect it for them
Writing grants has taught me how to fail 30 times. I look forward to the 31st time. Counting failures is something I do now. Something I embrace too. The hurdles or the joy. The writing. The waiting. The bearing witness to, how things we believe in crumble, for lack of funding. And I have believed in so many things that failed. Poured my blood into missions that ended before they even started. I am learning to love all the pain they entail, all the sadness too, or the weight of each failure. Not because success isn’t better. But more so for the lessons every failure teaches. The doors and unexpected journeys along the way they open too.
I wrote a grant on ways to arise, on ways to let minds often ignored thrive. Failing with that grant broke me down that I became the opposite of what we sought to do. My mind failed me too for awhile. Until I started to see the beauty in failing. See that grant would have changed my life but failing it too has opened new and unexpected doors for me. I expected to scream that we got funding to do great research but now I scream we have no funding, but impactful work continues. In fact the most important work you will do, is the work you do for free. The work you wake up everyday to simply do because you have too. The work you use to connect with each other as humans. The work you do to provide light to dark spaces. My grants are often for the eyes of few people to see. But the most impactful work I have done are free, open and accessible for all to see. It cost me nothing to use words, my words to change people’s life. I may have failed to secure funding for my grants, but every day and through my words, I secure hope that connects us to each other. This is the beauty of failure worth spreading. (ps another grant is being reviewed today as I type this, I may get my wish before next week with my 31st failure. Accepting each one gets better with time).
If we keep doing what we have been doing, the odds of getting the same results will be high. It’s for this reason I am drawn to grants that ask for innovation. Transformative ones too. Today, I sat through an NIH webinar focused on a transformative grant application to address health disparities and advance health equity. I was curious to know what the NIH was interested in. For starters, they want the most innovative and most impactful research. It must have the potential for transformative impact. No preliminary data is required too. Bring your best ideas the NIH says and when you do, may they be transformative, as such activities are urgently needed to prevent, reduce, or eliminate health disparities and advance health equity.
Ever since I came across this request for application, I have been struck by 2 things: 1) what does the word ‘transformative’ mean and 2) by whom. One of the best grants I have ever read once stated the follow and I’m paraphrasing; ‘individual researchers innate tendency to group think often results in homogeneous ideas that are then implemented on communities without an understanding of whether these interventions are truly what communities want in the first place.’ Ever since I came across that grant, I have always wondered whose agenda truly wins in the end. Certainly not the communities as many of them do not have the necessary skills or time to write such complex grants in 2 months. You guess it. You only have 2 months to write this particular grant. Meanwhile, communities have more pressing issues to deal with like today. Then there is the word ‘transformative’, by who, another researcher, another member of the academic community with their views on what is right or wrong that is often not in alignment with those of communities. It’s for this reason that I adore my background in culture. For starters, as my advisor would say, I don’t have any answers. It’s a privilege to even work in communities. Our research approaches communities from the standpoint of communities themselves having all the solutions to their problem. They live in and love their communities after all. We get to come in and out but communities remain with or without us. Making sense of what then is transformative would be futile if the community is not invited to the table in the first place.
So back to the request for proposals. What does the NIH want? You guessed it, transformative research to address health disparities and advance health equity. And how will we know that a research is transformative. Honestly, your guess is as good as mine. But if individual researchers innate tendency is to group think, then what is transformative would indeed be subjective since it left to researchers to decide what they feel per your scientific rationale of course. Now when you bring in the lens of communities, when you tell them that it’s up to them to decide just what they believe is transformative to them, then maybe we may get to the bottom of health disparities. It’s why I am drawn to these types of request for proposals and ask that you pray for our success. Keep communities designing transformative interventions by communities themselves not researchers in mind with our own agendas. That to me is where transformation begins.
What if we could dream up the perfect research or project? What will it entail and why? Who will you partner with and why? And how far will you go to create something innovative. The grant writer in me dreams of opportunities that allow me to wet my soul literally speaking. I am a sucker for grants that want innovation. Those that demand for it make me weak. Grants unafraid of researchers willing to go there are my weakness for I will. I have the tenacity and determination to think up crazy ideas if only they will make it out of my head and into something easy to understand. Yesterday, brainstorming with my team was one such rare opportunity where I let my mind and heart dream of the perfect research experience. They asked what will it entail. Before I even knew what it would be, I said of course something on storytelling and grant writing. Anything that lets you know whoever you are that would want my services, that I would be willing to join you on this adventure called life. The journey is yours, but mine too. We came up with a name. It’s in praise of an endless journey. One that I would take for the perfect grant. If only those exist. Till then, keep dreaming.