 Good day viewers and welcome to another edition of our cancer with Dr. Denise Edge of the CEO of Combo Cancer Foundation in partnership with Plus TV Africa. We want to thank you once again for joining us as we discuss what's going on in this cancer space from the perspective of advocates. 2023 we are on a mission to make a statement. Cancer advocates and cancer patients will be the drivers of our conversation throughout the year. Hopefully we will get through to all those that are in our positions and are battling with this disease and those that have come out of it they're going to give us some insight. So today in the house I've got two powerful advocates from two very different perspectives. I want to thank you ladies for joining us. So today what are we talking about? The cancer advocates contribution to closing the care gap. First we've got in the house Tiwa. Tiwa Onosunya. Tiwa Onosunya is a publisher, mindset stylist, philanthropist and the founder CEO of Exquisite Magazine. Exquisite Magazine Cancer Care Foundation. Woo I didn't even know that that's who you are. All right then welcome. Welcome on this space. So we're then having the house Olavisi Olavisi Oladino, a breast cancer survivor. Olavisi is the founder of Wyn Cancer Foundation. Wyn Cancer Foundation's mission is to support cancer patients and survivors including their caregivers to provide emotional counseling support and respite including financial support. Oh wow thank you very much. You see when you have powerful women in the house we have to recognize you guys man. So today we're going to be talking about the challenges. February 4th is the World Cancer Day and the theme of World Cancer Day is closing the care gap now. Both parties or all of us on this platform are in one way funding, supporting or stakeholders in the discussion on what constitutes closing the care gap especially as patients or patient advocates. So let me read out something that I have just been posted in the last 24 hours. The UICC, now the UICC is the Union for International Cancer Control President, has highlighted a very big concern that I think the world needs to be aware of and Nigeria needs to really take cognizance of what is going on. In January 2023 he has been stated that there are an additional 1.8 million people diagnosed with cancer globally. I said January 2023. This is 2023 January. Yes we're now entering February and this is what we're hearing and suddenly in the same January this is January 2023. Around 900,000 people have already died of cancer. Welcome to our conversation about what is going on in our space. So briefly I want us to share your cancer story. So when I use the word cancer story I have an advocate and a cancer patient. So let me start with the cancer story of PC. All right good morning everyone I'm here in the United States they're still mourning. So my story is a very interesting one. I was diagnosed with breast cancer at the age of I think I was 26 or 27. Yeah 10 years now. The first of my family so there's no history of cancer in my family not any kind of cancer. When I got my dad so at the age of 16 actually I did discover a lump on my left breast and we had a lumpectomy and it was benign and then when I discovered the lump on my right breast so many years ago I went through chemotherapy, lumpectomy and radiation. Five years later the cancer returned and at that time I decided to go through mastectomy. The first time that I had this cancer no one talked to me about mastectomy if I did have that option then or if I was aware of it I would have opted for mastectomy but it was less awareness I was in panic I just wanted to survive so I wasn't survival mode in whatever it is that my doctor said I was going for it I never did any kind of questioning didn't do a lot of research because as far as I was concerned cancer was a white person's disease so when you know when you hit me I was like oh my god when I'm black you know and in the whole process of all of this is going through this journey in researching and getting more information about cancer I realized that it was very important to first of all create the awareness so awareness was the first thing that brought me cancer off and as I was getting into the awareness I realized that there was a lot of needs outside of awareness and so that's how we better win cancer so that's just brief there's a lot of more story behind that but just to be brief no but actually that is an interesting start to the conversation because you are breast cancer survivor and advocate you are an advocate you are throwing a lot of weight behind advocacy why what brought you to our space what what are you hoping to achieve maybe it's too many questions so just try and I will come back to some of them I'm sure fantastic thank you so much and I have to say that but you both you ladies are warriors you are fighting the fight and you are winning so um you know I'm very very um I'm congratulating congratulating you both I'm very excited to to be on here so yes I am an advocate and people always assume that you know maybe I have a story to tell or something's happened in the past and that is why I'm advocating strongly advocating especially for cervical cancer and it's just because I I feel like I am blessed to be um to have been in a in a in a culture where as long as you're sexually active or you get to about um age 2021 they force you and when I say force you they don't you know tell you nicely to go and get screened for cervical cancer they actually you know they tell you to get screened if you're not getting screened they send you a letter if you're not responding to the letter they would call you to go and have your screening done and that's because a lot of women are dying from a cancer that is 100 preventable and they want to stop it and then I moved to Nigeria well kind of like started going back and forth to Nigeria in 2000 and 2008 2009 there about and one day I was speaking to one of my friends who you know at that time we both had two children and um you know I was just talking to her and saying that oh I'm going back to England I have a smear test the pap smear um book that I have to do and she was like what are you talking about I'm like huh what do you mean what am I talking about this was the first time that it actually occurred to me that not everybody even people that are educated not everybody knew about cervical cancer they didn't even know and she was looking at me with a blank face like what are you talking about and I'm like you know the test for cervical cancer that you have to do every three she was blank we've had two children that means and the reason I keep saying we've had children is because even after I had my son they didn't swap to just check that everything is normal and I'm thinking to her you know have you never had she said no she's never had a screening and she doesn't even know what I'm talking about so at that stage we started exquisite magazine I think exquisite started in 2002 sorry 2003 so we've been a few years into that and then you know so I came to England did the test but I was a little bit worried and I was scared as well so I started doing a bit of research and then I found out that according to the WHO report one woman dies every hour of cervical cancer in Nigeria I was like what an appointment and one woman every minute of breast cancer and then I kept reading on reading on and I'm like oh my god this is this is no this is not acceptable and because my magazine is a magazine that you know wear fashion beauty wellness lifestyle for women who else should advocate for this other than the magazine that was why in 2010 we started something called the exquisite magazine fashion party where we thought okay let's use fashion to bring people in and then tell them about you know tell them about cervical cancer and in the following year we were able to raise a bit more money we were like okay you know what let's do a fashion party then get everybody to get screened on the day and we did that day we were able to screen a hundred people guess what we had 20 people with pre-cancer cells this was in 2011 unbelievable and then by 2012 we were like okay you know what instead of all these monies we raised to God's glory even though we don't raise the amount that we want but these little monies that we raise instead of doing a fashion party where we have to pay models we have to pay makeup artists let's do a walk let's do a walk where bulk of the money we now have will go towards screening people so what we started to do was okay yeah let's do a walk raise awareness and the big thing for us is raising their awareness because we found out that nobody and when I say nobody maybe like 0.001 percent of people in Nigeria then more about cervical cancer because we didn't I don't know if you if you're familiar with the with the palms the shopping mall in Lagos we did a survey in 2000 and I think 2011 or so we did a survey at the palms and about 99% of the women didn't know about cervical cancer and then the ones that knew haven't been screened at all never and I'm like this is ridiculous so we began you know just trying the best we can raising our awareness so what we started doing is with the magazine we would put a sticker on the on the cover of the magazine saying cervical cancer is preventable go and get screened we just wanted more and more people to know about it and then we began the screening and then we said okay you know what people know people get screened what happens after it needs to be out there as well that January is a key month for women cervical cancer yes we all we all have to keep campaigning that I think that for everybody that is watching you've all gone through the January experience and you should know that the women have been making a lot of noise and we continue to make noise and let's see how we get on so thank you thank you but I need to move this now so what are your desired expectations in closing the care gap because we are struggling as a country and we have to be realistic we can't keep lying about this so give me three expectations you have my huge expectation would be you know god help us funds to be directed at preventative measure and also people that have already that already have cancers to be able to help them survive even better you know I said preventative measures because the awareness is still very very low and if the awareness is there and people are going out to get screened and people are not scared to get screened we will get somewhere especially with the preventable cancers people should know that you know during your period or is it after your period feel your you know still around your booth to be able to do this people need the information information is key so while we're even talking about finance we're not only talking about finance for treatment we're talking about finance to you know make make everything more visible let the publicity be out there and then you know having that care for people who already have cancer so they they're not dying from these cancers fantastic okay now I question how many oncologists do we have in Nigeria as of 2021 we were at 70 to 80 as of exodus going on now well how many have we got left we have a population of 200 plus million people we have a cancer community of at least globally now this is one in two so let's divide it that is half of 130 million is 65 million that we expected to have cancer in Nigeria let's let's let's start counting these maps properly so now if you're asking now I'm looking at this I'm saying to myself okay I will not look it let's be honest we are setting cancer patients up or are we are we setting them up to take the screening and then we can't do anything for them or are we setting them up to take the screening with the hope that funding will come from some way and I'm very concerned about this because I've had to examine myself and ask the question how do you feel how would you feel if you were the one that went for screening you knew had cancer and you knew that you couldn't do anything when truthfully you could have had many years not knowing and if you found out at the very end you don't have money to pay for it I'm just throwing thoughts into the public and you understand let's let's reason it out this is not we're not we're not having the program because we want to just have a chat we want to address the key things okay this is a very very valid concern so when I started with cancer I was on the same page as Tiwa shocked at the fact that a lot of people were not aware of cancer like I said even I in the United States felt like it was a white man disease so you can imagine how many people have that same mindset as I did back home so awareness was very important to me but as I started the journey of creating this awareness I realized exactly what you asked just now Dennis then what what is the next stage there's some people that you know are you not better off just leaving them not knowing that they're going through this disease knowing that you don't even know how to go further the first awareness campaign that we did in Nigeria when cancer foundation in a community we discovered about 20 women that I had breast lumped and then we had to send them off for further testing we tried a partnership we tried to partner with um lutes at that point those of oncologists at lute that we were in good communication with and um you know we sent them out there there was a lot of frustration some of them because they were in attended to they never went back you know a few of them through and this was all self-funded now in between I think that was the next awareness run that we did there was a set of like five women and that was in my community where I grew up in a cage there were five people that act alone and out of those five people we had one 16 or 17 year old girl that had a lump now the question was how do we move forward with this patient I was very very particular about I needed them to go further get the test done if we had to do a biopsy but it was very important to me that we had government funded hospitals which were like general hospitals right and we didn't get the support we didn't get the support from the hospital in bringing in these people so you can imagine they don't even believe that an NGO can be self-funded so that was a big struggle now the money in having to take care of five six patients that I discovered in that particular awareness program I had to pour it into one patient because now I had put agents you know into the conditions like she's a very young child she has a lot in front of her you know I would um put the phones and supports in this person compared to trying not that I'm saying that it's not valid that a 50 year old woman has this kind of same situation but then you have to have to start weighing it down because now money is being played in factored into all of this so for me personally it keeps me thinking do I really want to create this awareness um exposing these people to this disease and not being able to help them further because I don't have the capacity to I don't have the funding you know I'm not having the support of the oncologist when I came to a conclusion I will rather partner with this hospitals and that's one thing that we can say is very big on lately I'm not sure if you notice we do a lot of awareness on social media but now we don't really do awareness campaign anymore because now we partner with the hospitals identifying patients that are struggling to pay and we pay directly to the hospital and that is the way to give back the way that I see it because I create this awareness I expose this person to this disease that they weren't aware of and I can't do anything to help my my my conscience just couldn't handle it so that's where you know the wind cancer foundation community this time and the team decided that that would be a better option until we find a resolution to this problem so for me that is you think about this all the time the creator and I'll give you one story there's a lady that we should we actually doing our um screening program we detected um a lump she actually did have stage one cancer and we were willing because she was young think 40 35 we were willing to go ahead with the payment and then you know she reached out to me and said madam I'll rather you give me this money my children are not they don't have food to eat and you want to go pay millions of dollars to pay for my treatment I need to be able to take care of my family feed my family before I can think about taking care of myself so we go through situations like that thank you bc you see you see when I say to you guys that this conversation is not about individuals we all have pain in the system that we are very aware of is killing all of us because you cannot do this if you don't have the passion because you will cry sometimes thank you definitely and I do agree with you bc to go to our next tent though because I believe definitely um after you found after the person's found out they have cancer care is very very important but I have to say that um the awareness goes hand in hand with that as well and I'm going to speak from a simple cancer perspective because that is the cancer that is 100 preventable that you know that if they are being screened the care if people are being screened if people are being tested for HPV if children start getting vaccinated amen by the government we will definitely close that gap and my my my big thing is we want to reduce the number of deaths from the next generation yes when we do the screening people will find out they do have or don't have but the people that do have they have to find out you know one way or the other if the government can help if personal if help one way or the other and it can you know it can be from all different it can be from different spaces even NGOs as well but I think the big thing is yes they might prioritize food over the care but it's still important that they know what's happening to their bodies and not saying oh you know somebody in the village which is the the thing that most people go for especially in the in the rural areas that's somebody in the village and blah blah blah so the awareness needs to be there for them to know that there's something that they can do as well just to add that thank you that it comes ending in I totally agree with you what I'm just saying based on my experience you know yeah I think it works me fair all of us agree that but all of us have different points you see like I always say to people I only do awareness I don't I don't engage with treatments and all that because I know I can't deal with it it's like telling me now let's go and visit people in the hospital I can't do it so all of us if all of us could stay with what our strengths are in the campaign we most probably will do a lot better but what we try to do is we want to be jack of all trade master of none and then we're not we're not able to measure and I need us to be measuring progress okay now um if I asked so let me put it this way if asked to name one thing please you want the world to do for us in Nigeria that is the different cancer global organizations that can support us because 80% of Nigerians are dying of cancer so there's no need meanwhile 80% of cancer patients in the world are living so let's one thing that you feel that we need to do because that's a question I had to answer so I want to know um your views and mine focused specifically on research funding or strategic emotional and financial aid for those with long-term disease yeah that is because you can't pay for you can't pay for if you are long-term disease you're you're you're broke you become homeless you don't have anything so everything goes and with the current global economy that's been going on it's worse okay so it says very fast now what is yours we see those are very keen right so since you've already um pointed out I'll go on the next level which would be subsidized funding for treatments that is very huge because when you think about I mean like I said we can't pay for a lot of treatments for patients and when we think about what it costs to actually get a scan a redation get um chemotherapy it is killing it is not an average Nigerian cannot afford to pay for one treatment not one circle and then you see them go through six cycles of chemotherapy so for me it is being that government is able to subsidize treatment um subsidized funding for treatments for cancer patients thank you thank you so uh what is your one thing and why my one thing and that's because you've mentioned finance and I think you've both mentioned finance and I think it goes under finance as well is free screening free screening for cervical cancer free screening free screening thank you that's what I would say and reason being cervical cancer is 100 preventable if caught early so let people who are sexually active get free screening and I suppose it goes under finance because the government would need to put a you know a budget to do to be able to do that but free screening if we're saying we want to close I go on I know but it's just just like you know so no no no it's fine it's a fair comment because free screening is free screening you see like that's what we're trying to address so I agree with you and we're now in a place where um and from what I understand Nigeria has now gotten to the point where we are going for what's it called we're going for the second third quarter under under 16s will now have access to free screening so all of us are here now we're going to be police people we're going to monitor this thing last last okay because we have to make sure it does happen and we want to see we want them to give us numbers because nobody wants to give us numbers we can't continue they say we're screening how many we want to know so let's keep an eye on that space and as we are as I think as we get ready to round up I want us to quickly just you all will give me one goodwill message to the cancer patients survivors one goodwill message um I think the message will be to remember to think healthy in as much as you know they're going through what they're going through remember to think healthy and think happy thoughts I strongly believe and this is from my mindset background mindset styling background I strongly believe that everything will win and lose in our minds first and if you already feel you know very low like it's not going to happen you're not going to be healed and things like that that's what will happen so I would say fill your mind with you know fill your minds with happy thoughts think health think yourself healthy and you will and I love what you said at the beginning that you use comedy to just you know to just work with life so one way or the other just you know find a way find what works for you and make sure that every single day you're living the best and you're living in that moment cancer is not a dead sentence yeah you know and I tell everybody that and I leave everyone with that like if I go to speak if I cancel with people I would always remind them no matter what it is that you're going through cancer is a dead sentence it is very important to keep communication open they say a problem the problem um the problem is shared yeah the problem shared is a problem solved solved so cancer is not a dead sentence a dead sentence I want to thank you ladies very much for your time for engaging with me today I want to I want to say to the viewers we're all sitting here and we laugh we laugh because you have to have some level of finding yourself in the mist of any storm and no matter how hard or what you see as a storm raging please reach out for help you can find all my guests are on the social media spaces so tell us please can you quickly give us your handle okay ours is at imac underscore cervical cancer foundation imac emac thank you I'm the same with cancer foundation on instagram win cancer foundation w i n thank you ladies I really appreciate your time I really appreciate what you've done uh at poem plus tv we really appreciate your engaging in this conversation follow us on our social media page commode cancer foundation we've got a youtube page which will host this videos so like them share them and and and the more we share the more we like the more we spread the message so thank you plus tv for funding this campaign and for encouraging us to continue we really appreciate all that you're all doing and to all those out there together we fight together we win we will get through this no matter what the battle is thank you all and have a lovely lovely day