 Good day viewers, welcome to another edition of Cancer with Dr. Denise H.J.O.C. of Cormorant Cancer Foundation in partnership with Floss TV Africa. June is Cancer Survivors Month, which is another international event to raise awareness of cancer, survivors, sufferers, and experiences today. Today we'll narrow in on chronic lymphatic leukemia and the role of an NGO in making a difference. And in the house who have I got, I have got Prof Nora Olubumi Akeola, who I will be speaking to about different aspects of the role of the NGOs. Hello Prof, how are you? Hello Dr. Denise. Thank you very much for inviting me. Nice to see your face again. Happy to be here. Thank you very much. Prof is a medical doctor from the University of Ife, now over from Awolowo University, and a trained doctor in internal medicine and pathology, which is known as hematology. Prof obtained a PhD in UK in 1992 and became a consultant physician, hematologist, then now a professor of hematology. Master Seed Health Awareness Initiative was established as a Master Seed support network as a non-governmental, non-political, non-profit making charity organization of multidisciplinary health care professionals that provide care and support services to people living with chronic illnesses, communicable and non-communicable diseases, particularly immunodeficiency conditions such as HIV infection, tuberculosis, psychotherapy, and cancer. Master Seed has received grants, many grants and awards, some of which include the USAID for the NACIN project, which was in 2008-2010. Global Fund Tobacco Assist Program grant, which was also received in 2019-2020, third fund NRF for the immunohistochemical. Medical people have very long words, molecular and side to genetic characterization of some cancers in southwest Nigeria. The Community Awareness Component and the IWCLL, now IW is a small letter, so Prof will explain that to us as we go along. A grant for the characterization of CLL in southwest Nigeria, Care and Clans Support Group Information Component, which is ongoing. Welcome Prof and the first question I'm going to ask you before we even start going far before I understand all these acronyms, acronyms. Many long words. Exactly, so first they want CLL please. CLL is chronic lymphocytic leukemia. Oh, so I was right. Oh my goodness. See, I'm not doing too badly. Oh my goodness. Thank you for helping me with that. You see, one of the things I've always done up to is I'm not a medical doctor. I'm a PhD holder in education. I talk about cancer as a survivor, somebody living with the disease. So welcome Prof to this edition of our program and thank you for going to join us. So here we go now. Let's have a talk. All of you watching us online. My name is Denise Edgewater, the CEO of Komoi Cancer Foundation. Let's go. What do the following two words mean? Immunohistochemical. I think that is immunohistochemical chemistry. I think that's what I think because I would say this is histochemistry. And then the chronic lymphocytic leukemia. Can you tell us briefly what those two first mean? Because without an understanding of that, the whole work you do will not be... Immunohistochemistry is the characteristic of lymphocytes that accumulate to form this disease that we call chronic lymphocytic leukemia. These cells have certain markers on them that determine the type of immune activity they may have. And we see that in the lab, use those to identify the cells and use those characteristics to determine whether indeed it is CLL or any other lymphoma. Lymphomas are the solid tumors that are associated with the immune system. And the immune system consists of various organs, the lymph nodes, the bone marrow, the spleen. And any of these areas can be affected when you're talking about lymphoma. So the cells themselves, which are the lymphocytes. Now these lymphocytes, they migrate from the bone marrow into the thymos and then the mature. And then they go into the peripheral blood and they function to help people to fight infection and improve, I mean, to fight any organism or any agent that is orange in the body. So the work to try and keep an individual in a healthy state and they constitute the main cells of the immune system. So basically, I'm going to speak it in an ordinary man's terms. Because one thing that is key in my head, I keep hearing is leukemia. I've always understood leukemia. Now I will go back to why leukemia is key for me. My mother died of leukemia. My grandmother died of leukemia. And leukemia to me is cancer of the blood. That's right, right? Correct. And then they break down into different components. All right, then thank you. Let's just stop there. Let me not even go and start getting myself when they twist before we go and get ourselves confused. Okay, so can you give us briefly an outline of what and who Mustard Seed Initiative is? Who are you? What is your project about and what is the benefit to us as any cancer space? Right, Mustard Seed Health Awareness Initiative started as Mustard Seed Support Network. But when we were to register in 2013 with CAC, the word network was rejected. So we had to change the name to Mustard Seed Health Awareness Initiative. And we've been working in the area of care and support for people with chronic illnesses. And as you said clearly, that this includes people who are living with HIV infection, psychosocial disease, tuberculosis and cancer. And as we've said, chronic lymphocytic leukemia is a cancer and cancers are lifelong conditions basically. And that means the people who suffer from cancer will need certain care and support services. And that is what Mustard Seed Health Awareness Initiative is involved in doing. And to do this, we go out to the community basically. We conduct outreach to sensitize the community about cancer. And for example, this was the flyer that we produced to celebrate World Cancer Day on the TETFON project. You can see TETFON written on there. And you can see some pictures of certain swellings on the jaw and other places. So to depict malignancies that is cancer of the blood and some solid tissue. And it includes also breast cancer, prostate cancer. As you know, breast cancer is the most common cancer known to women all over the world. And prostate cancer is the most common for males all over the world. So that leukemia, which is blood cancer, is not so common. Likewise, the lymphoma complement. So we call them lymphoproliferative diseases. They're not so common, but they are becoming more important because of the opalation at risk. There's usually chronic leprosythic leukemia, usually a disease of elderly. We have found that in Africans, there is a bimodal presentation. That is, you have a group of patients who are younger. That is around 40, 50. Even some 30-year-olds have been reported to have chronic leprosythic leukemia, which is supposed to be leukemia of elderly. And we also observed that the presentation of chronic leprosythic leukemia in Nigerians and Africans generally is somewhat different from the way it presents implications. So there's that vest. And this is what this project that we are about to embark on, that is being funded now by IWCL, that is International Workshop for chronic leprosythic leukemia. So that's what IW stands for, International Workshop. And they have been very generous to fund a project that was brought up in our department, the teaching hospital, OAU teaching hospital. And there's a component that involves the community outreach and support for the patients with chronic leprosythic leukemia. And this is where MOSTACID comes in. It was in 2017 that MOSTACID became a member of the CLLAN network organization that CLLAN is chronic leprosythic leukemia advocate network. It's an international network that incorporates, that works with NGOs all over the world. And MOSTACID supports, that is MOSTACID Health Awareness Initiative, is the first NGO to be incorporated or to collaborate with CLLAN in giving care and support to people who are living with chronic leprosythic leukemia. Now this project is going to enable us to reach out to people more. And not only in a fair area, we have a support group for our patients here. Since 2019, but we will be able now, because we have funding, to be able to reach out to patients across the Southwest, at least as an initial intervention. And it is a project that will be lasting for three years. And after that, depending on the outcomes and the success of the project, there will be a scale up of this to other parts of Nigeria. You have explained to us so far where you are with the project and the fact that it's a Southwest project, which will bring me back to a question of what I want you to finish because I want you to explain for us, please, the benefits of this project to the patients, because it's an advocacy stand. We're not talking about the medical, we're talking about the mental care that comes with this journey. And for me who lives with the disease, you know that I talk about it, it's just very hard. Can you please talk us through that, please? So it's the care, the word care and support. Yes, exactly. The essence of this project is to try and improve the care and support for our clients. We call them clients in the community. And what NGOs do is to do what doctors don't have the time to do in their clinics. And that is to give care and support. The care comes from the concern that a community volunteer has to help a client in need, basically. And we're saying that with the concern comes passion, passion to give care. And there is a need to affirm that relationship with the client. So we need to get the confidence of the client so that they will be able to cooperate with the care provider in the community. And they will be able to open up until the volunteer, the community volunteer, their challenges, their needs and aspirations as the outcome of the disease. Because it's a lifelong disease. It's once diagnosed, you live with it for life. So along the line, there's need therefore for us to ensure that the community volunteers respect the clients and they are able to encourage them. So that is the care side of it. The support side is that this NGO and other NGOs work together to provide services like nutritional support, financial support, psychosocial support, religious support. So these are the support services that we try to give our clients. And that is where support groups are important. Because the doctors don't have time to provide these services, the NGO will coordinate the support groups, encourage the patients to attend the support groups. And then they'll be able to meet with other members of the team, that is of the department or the clinic, who have the same type of disease, but who are also suffering from chronic lymphocytic leukemia, who are also suffering from CLL. As I said, the support group is for any condition that is a chronic illness. So as I said before, it can be for psychosocial disease, it can be for diabetes, hypertension, cancer. So all chronic diseases should have support groups for their patients. And they will be able to meet with other patients who have similar diseases and who can share their experiences during the time frame of the support group. Now listening to you, it's interesting because when you think about the support group and you think about the wide group of people you are catering for, this project now, is it catering for all the groups or have you got a part where we need at least cater for 100 people who have cancer in the Southwest and see how they are progressing. The reason I'm asking it is because cancer on its own comes with all those key variables that you have mentioned in these psychosocial ways that we live. And a lot of people assume that they understand and it's an assumption. And a lot of the time, cancer patients will run away from what you are describing, not because they want to, but because they feel that, you know what, I can't deal with this. It's not financially I don't have it emotionally. You don't understand and it's not because they want to, but because they have to. So I'm asking in the sense that you've got a plan, you've got the process, you've got a group of people that you are targeting. They are the most vulnerable I think in society where medical health is concerned. So now what is your way forward with that particular small group? Okay, as you said it's a small group because the prevalence of... I'm looking at the accounts now that's why I said that. There's a CLL, yes. It's a rare condition in this part of the world. So we're targeting, like say, 7 to 10 patients per year per centre. We're looking at enrolling about 7 to 10 patients from each centre across the Southwest. So we're talking about doctors, hematologists who are looking after CLL in all the states in the Southwest. This is the six states in the Southwest region. So we're looking at six. I want to do something. It's over a period of two years. So I want to do somewhere because I believe that this programme will help us to help those who have the disease. Some of them will come out because they need the support. They don't have. Yes, so let us look at it. Exactly. So how many communities... So it's not 7 per state. It's 7 per centre. Which... A centre. Exactly. A referral centre. You know, patients are referred to. Yes. Yes. So on the average, exactly. So there are people in the community who don't even know they have CLL because many times it doesn't show up with symptoms for a long time. And they don't get to know that they have anything wrong with them until they begin to feel sick. They start getting tired because of the anemia or they begin to see some lumps showing up in the neck or the axilla or maybe the spleen is getting larger. So these are some of the symptoms that they may experience that will bring them to the hospital. What we're saying now is we want people to come and just do a blood test, which we call the full blood counts. Yeah. All right. And that won't cost too much. It varies from 2000 to 2500 wherever you go around Nigeria. And let everybody who is 40 years and above do this at least once in two or three years. Okay, so now I'm going to ask you the next question. So based on that and you said 2500 and you have an NGO does your NGO have funding for us to put this out? It is to do require for them to do the blood counts because that's what drives them first and foremost. I don't want to know. I don't have the money. Why do I want to know? Well, it's going to be expensive if you ask everybody in the community to come and do a full blood count. We don't have funds for that. But what we do have funds for is to help those who have been diagnosed to have CLL to support them within the support group and also to enable them to do some tests while they come to the clinic. We will be able to support them with some funds to do that and also to encourage them to attend support groups. We'll give them some funds for transportation and refreshment and things like that during the support group. Yes, there is funding for that. Awesome. So I'm going to put this out now to communities and to health professionals and we're going to put it out so if you can please at the end of this share us whatever fly or whatever you got that we can put out to share so that for the medical space because it has to go into the medical space but we the patients don't really know and you are the only ones that can identify your target audience but we've got to get this message to the medics that this facility is available. And so if you can share that with us. We want to thank you very much and I'm going to ask you one last question and it's very brief but I need you to answer this. If you had a wish list. Okay. What would you like to see that impacts this social change because I see this as a social change project, right? Nationally because currently it's targeted as Southwest. So Southwest is three years. Three years is a long time if we do not try to find a way to get it across the country because it's a small group of people it's easier to find help for a smaller group of people than big groups. And this is a small group and currently is on Southwest but we need to get it across. So your wish list. Let me go very quick. Nationally one as NGO one. So something you want the angels to do for you to help us through this too. And the last one is for us or the community, everybody at large. Yeah. What do you want from us? Okay. Just to say before I tell you what I would wish that there is an NGO called Siskanen in Nigeria. It is the civil society organizer, I mean, association or society for eradication of cancer in Nigeria. Okay. And this is not being supported adequately. It's not been supported adequately by government. We need government to support the work of this NGO across the nation. So that's a wish list. That is number one. Okay. That's number one. And number two, I would recommend that if possible the national, the Senate puts out an act or something that would enable, that would enable some support under the national health insurance to support cancer or treatment of CLL in Nigeria. As I said, it's a rare cancer. It's not like the solid tumors like the breast, the prostate, the colon, you know. But we would like government to put on the NHIS lists support for the drugs for this patient because they're very expensive. They're very expensive drugs. And most of our patients can't afford the standard regimen for this condition. So that's my second wish list. That is one, that government funds NGOs through CIS canon. And then two, that NHIS would recognize the need to support patients with CLL and by extension patients who have hematological malignancies, that is cancers of the blood. CLL is just a portion, right? We have a sister arm, which is the CML arm. And that is the chronic myocytic leukemia, which is more common in Nigeria than CLL. OAU, THC is the hub for that in Nigeria. And all patients come once referred to ILEFA to receive free treatments with very expensive targeted drugs, all right, for their treatment. And this has been supported by international agencies. The Max Foundation has been very kind to us since 2002 where we've been receiving treatment free of charge for all patients with CML. And the drug is so expensive, but the patients get it free of charge. And this is what we also like to have happen for CLL as well. Thank you very much. Thank you for sharing with us. Thank you for your three requests. And for me as a cancer survivor, I'd like to say once again, Common Cancer Foundation is an awareness NGO. We create awareness. We open opportunities for discussion on the different cancers in Nigeria and opportunities for us as Nigerians. So I want to say a very big thank you to you, Prof, for sharing this. And I think there's a conversation we're going to have to keep going back to. For me, leukemia is very real and I would want to see it re-discussed when we come into leukemia month. So you know that trust me, we'll come back to this conversation. Maybe I'll get a panel of you. I want to say a very big thank you. Thank you for participating and engaging with us. You can follow us on Common Cancer Foundation as social media platforms. We are on LinkedIn. I think we're LinkedIn as Denise Edgeall. You can find Common Cancer Foundation or you can find us on Twitter. I'm still there. I just want to say thank you for following us. Thank you for watching. Thank you for being active and giving us feedback. And we want to ask you to send your comments, sending information, share what you're hearing, subscribe, like. All our videos are on Common Cancer Foundation YouTube. And this will be going live on there as well. We want to thank you once again. And we look forward to seeing you soon. Have a fantastic week. And to all of us, happy cancer survivors month.