HPV Stories

Tolulope Falowo is a Nigerian women's health advocate, social entrepreneur and researcher. In 2014, Tolulope founded CancerAware Nigeria, a non-profit dedicated to promoting the prevention and early detection of cancer in Nigeria, particularly among women. CancerAware Nigeria has been an IPVS partner on the International HPV Awareness Day (IHAD) Campaign since it began in 2018. Her path over the last 13 years makes an interesting and unique HPV story.
 
Tolulope, your educational background is in finance and management. How did a young entrepreneur find her way into cancer advocacy?
 
TF: It sounds strange, but some of the credit should go to the National Health Service (NHS) in the UK. In 2009, I moved to the UK to do my master’s degree in the lovely city of Sheffield. Upon arrival, I was automatically registered with the NHS, and a few months later I received an invitation to get a routine pap-smear. This was the first time I had heard of the test.  Initially, I didn't pay attention to the invitation but after a few more reminders, I finally went to the appointment. The nurse informed me about the procedure and why it is so important. Thankfully, the results were fine, but I had really learned a new and valuable lesson about protecting my health.
 
Around that time, a popular reality-TV star named Jade Goody was all over the news for having been diagnosed with stage 4 cervical cancer. Her story generated a lot of awareness about cervical cancer. The publicity was effective - cervical cancer screenings in the UK reached an all-time high because of her influence. Sadly, Jade Goody passed away that same year, but the powerful message I was hearing from different directions stayed with me.
 
Fast-forward three years to 2012. I was back in Nigeria, and the time had come for me to get another pap-smear. I started looking online to find where I could go for screening in Lagos. It was difficult to find. It seemed to me that the level of awareness of and access to screening as a vital preventative measure was low. When I finally found a clinic that would at least give me a simpler test called a VIA (visual inspection of the cervix with acetic acid), the nurse talked about the many women coming in from all over the country with late-stage cervical cancer due to the absence of screening services in rural areas, especially outside of Lagos. I decided something had to be done here, and I was going to be the one to do it!
 
Where did you start?
 
TF: I began by doing extensive research to build up my own knowledge. Since I am not a medical professional, I sought introductions to experts in the oncology field and connected with a fantastic oncologist in Lagos who bought into my plans.  Eventually, I set up an online information portal for women to learn about cervical screening and where they could go to get it. Then we launched a social media campaign, which took off quickly! Women from all over Nigeria were contacting us and asking questions, looking for screening services and so on. The information portal turned into an official charity that drew reputable members of the medical community onto our advisory board. The rest is history. CancerAware Nigeria moved from simply providing information to screening services, diagnostic and treatment support and advocacy. Eight years further down the road we are still going strong with this work.
 
How is CancerAware Nigeria funded?
 
TF: We got off to a strong start, implementing many projects and making them highly visible on social media. People came to believe in the importance of our mission, and we started receiving small private donations from individuals on a one-off or monthly basis. This source of funding has been our mainstay. CancerAware Nigeria has also received funding from the commercial sector, beginning with a number of companies in fast-moving consumer goods. Multinational companies have sponsored projects as part of their corporate social responsibility activities. Small and medium-sized companies contribute to initiatives in their locality. At a certain point our track record was strong enough to attract international grants, which has significantly expanded our capacity to deliver information and services to women across the country.
 
How does the Nigerian Ministry of Health fit in?
 
TF: Cancer is a non-communicable disease (NCD), and generally speaking NCDs receive less attention and funding. However, the human papillomavirus (HPV) causes cervical cancer and as a virus, HPV is transmissible! Part of our advocacy efforts involve convincing the Nigerian Government that primary prevention - HPV vaccination and screening is the way to go. Both the human and economic costs are much lower than the price of treating precancerous lesions or cervical cancer itself, bearing in mind that most women in Nigeria do not survive cervical cancer because it is found too late. However, the Federal Ministry of Health has competing needs as it regards the health sector and has prioritized problems such as malaria, HIV, infant mortality, which are of course also very important health issues.
 
How many cases of cervical cancer are reported each year?
 
TF: According to the IARC 2020 figures, around 14,000 women in Nigeria are diagnosed with cervical cancer every year. This figure is probably understated due to inaccurate cancer registry data. Many women, particularly from rural areas never make it to the hospital or clinic to be counted. Healthcare expenses are usually paid out of pocket, and they simply can’t afford to make the journey and pay for screening or treatment. That’s unacceptable. Nobody should be dying from cervical cancer when we have the means to prevent it.
 
What is the #14000Reasons Campaign?
 
TF: The #14000reasons campaign calls on the Federal Government of Nigeria to introduce the HPV vaccine into the country’s routine immunization program. We hope to collect at least 50,000 signatures on a online petition that we will present to the Government on International HPV Awareness Day on March 4th, 2023. You don’t have to be Nigerian to sign this petition, it includes signatures of people from all over the world. As of this year, 23 other African countries have introduced the HPV vaccination into their immunization program.

So there is no HPV vaccination program from the Nigerian government at this time?
 
TF: Unfortunately not. However, the National Primary Healthcare Development Agency (NPHCDA) has been taking some steps in this regard and it seems like we might be moving in a good direction, just not quickly enough. Parents must pay out of pocket to get their children vaccinated against HPV, which is unaffordable for many families. In addition to this, the HPV vaccine supply has also been very low during the COVID-19 pandemic.
 
Has it been difficult to talk about HPV in Nigeria?

TF: It has been a challenge. In 2017, when we launched the #WhatisHPV Campaign, most respondents had no idea what HPV was. We also battle with misconceptions such as HPV is ‘only a women’s problem’ and it’s a ‘sex-virus’ linked to promiscuity. One woman was concerned that if she tested positive for HPV, her husband might think that she had an extramarital affair.

Making a health issue engaging for the public is challenging. We ensure our health information messages on prevention and early detection target the right audiences. When CancerAware Nigeria started back in 2014, having conversations around cancer in the community was quite challenging; to mention it was like inviting disaster to walk through the door. Today, talking about cancer has gradually become more commonplace.  Now it’s more acceptable that people reach out for information and are willing to listen to us.

We can apply that lesson to HPV as well, and it shows why awareness campaigns are so important. If we keep talking about HPV, we will slowly break down the stigma around the virus and make the conversation feel normal instead of awkward. More people will learn the facts and how to protect themselves.

I encourage those who read this article to add their signature to CancerAware Nigeria's petition to the Nigerian Government to introduce the HPV vaccine into the country's routine Immunisation schedule. 

IPVS loves to share inspiring stories from organizations and individuals like Tolulope, who are working to raise awareness and advocate for action on HPV-related cancers. If you have a story that you would like us to share, please get in touch with us at admin@askabouthpv.org.