Agnes Nsofwa is a Registered Nurse and Global Health Advocate. she founded ASCA, a not-for-profit organisation supporting families impacted by sickle cell disease in Australia. Agnes is also the founder of Amplify Sickle Cell Voices International Inc, a not-for-profit organisation whose aim is to give a voice to people from emerging economies and lower settlement areas sharing their experiences as sickle cell patients, caregivers, or healthcare providers. In this interview by Alaba Ayinuola, Agnes speaks about her NGOs, funded projects and her career-path. Excerpts.
Alaba: Can you briefly tell us about yourself and your career journey?
Agnes: My name is Agnes Nsofwa, an auditor and analyst turned Registered Nurse. For years I worked in the Tax Office as an auditor. After I migrated to Australia and worked in the bank for a few years then due to family reasons, I changed my career to become a Registered Nurse. All these skills have been helpful in my current role as a Quality Assessor, which involves assessing healthcare homes and reviewing their practices using my nursing experience. This requires me to understand auditing skills as well as understanding nursing standards to measure against.
Alaba: What motivated you to start your organisation, Australian Sickle Cell Advocacy Inc (ASCA)?
Agnes: Australian Sickle Cell Advocacy Inc is a community not for profit organisation supporting people impacted by sickle cell disease in Australia. It’s Australia’s first charity exclusively dedicated to serving the sickle cell community. My motivation for starting the organisation was to fill the gap that was missing in terms of supporting people impacted by sickle cell disease. For over six years after our daughter was diagnosed with sickle cell anaemia, I felt alone and needed someone to talk to. So, in the hope of finding out more information about this condition, I went on social media to learn as much information as possible. For me this was a coping mechanism when I felt low about the uncertainty of this severe disease. However, the information I saw did not really help, rather depressing stories about how this disease can affect people.
Hence, I decided to take control and create a Facebook page where I would post positive news. The goal is to post educational information and news that was uplifting. That was six years after our daughter was diagnosed. Three years after managing this Facebook page, with a lot of enquiries on the page, I decided to ask a few friends of mine so that we could come together to create an official not for profit organisation dedicated to all people impacted by sickle cell disease in Australia.
Alaba: What is Sickle Cell Disease (SCD)? Is Sickle Cell Disease the same as Sickle Cell Anemia?
Agnes: Sickle Cell Disease is the hereditary disorder in which abnormal Haemoglobin within the Red Blood Cells (RBCs) causes the cells to take on abnormal sickle (crescent) shapes. It is one of the most common genetic disorders in the world affecting predominantly people from Sub Saharan Africa.
There are different types of sickle cell disease, the most common ones include: sickle cell anaemia (SS), Sickle Hemoglobin-C Disease (SC), Sickle Beta-Plus Thalassemia and Sickle Beta-Zero Thalassemia. So, sickle cell anaemia is a type of sickle cell disease.
Alaba: What part of the body does sickle cell disease affect and the current treatments are available?
Agnes: Sickle Cell Disease affects all parts of the body as it is impacting the red blood cells which is one of the main components of blood. The main target is the Hemoglobin in the Red Blood Cells which carries oxygen to all parts of the body. Hence you see that all the organs in the body are affected and due to lack of oxygen to the parts of the body, it brings about a lot of complications. Some of which are: Pain episodes
- Leg ulcers
- Kidney or urinary problems
- Splenic sequestration
- Hand-foot syndrome
Most of the treatment options are only there to treat these complications. The only available cure is a bone marrow transplant. The other available medications are there to help with red blood cells.
Alaba: Could you briefly share your personal experience and how you were able to manage it?
Agnes: I am a caregiver to a fabulous girl born with SCD. This is what drove me to start speaking up about the issues affecting people with SCD in Australia. We had to move between three States for us to find the perfect treatment for her. Her complications from SCD were one of those complicated cases such that at the age of 8, she had utilised almost all options available for management of SCD. The only option we were left with was trying a bone marrow transplant and were fortunate to have a matched sibling donor. But this was tricky because this treatment had never been done before in Australia for SCD HbSS.
So, we trusted God and our instincts to go for it, and it paid off. Our daughter is now cured two years after undergoing the BMT, becoming the first child to undergo a BMT for SCD SS at the Royal Children’s Hospital in Melbourne Australia. However, the fight still goes on for over 1000 people still affected by SCD in Australia.
Alaba: What were the challenges when founding ASCA and the impacts made since inception?
Agnes: Founding ASCA was organic because we already had a presence on social media (Facebook), but there were and still are challenges because people still fear stigmatisation from talking about SCD. Other significant challenges were that we are a volunteer organisation and must source funds for our activities through sponsorships or grants. In the time that we have been around, we have achieved a lot of things such as:
- Receiving acknowledgement of SCD as a serious chronic condition from our Australian Federal Health Minister, the Honourable Greg Hunt MP on World Sickle cell Day in 2019 and 2020 respectively, for the first time in the Australian History.
- Being one of the first organisations in the world to create a sickle cell course for healthcare providers as SCD is considered a rare disease in this country.
- Creating the Amplify Sickle Cell Voices Part Webinar Series, which provides a platform for collaboration, knowledge sharing, advocacy, and education, bringing together global SCD advocates, world-class experts, and physicians. This is the first time in history that sickle cell warriors from all over the world have been able to share ideas in one “room”. Partnerships and connections have been formed because of this initiative.
- One of our recent best achievements is the approval of our newborn screening application which means that we will get a step closer to help detect SCD early and get children treated as early as possible, helping to start the management of the condition early.
Alaba: How does your organisation measure its impact?
Agnes: We have committed to a 5-year strategic plan, describing the objectives we would like to see from the gaps we have identified. So far, we have been able to tick off a few issues from this plan and we are confident as we go, we will be able to achieve a few more objectives.
Alaba: What do you think are the challenges in improving health in emerging economies?
Agnes: One of the major issues affecting people from the emerging economies is the issue around access to adequate and comprehensive healthcare. It is a well-known fact with a lot of literature to support that people in developing countries tend to have less access to health services than those in developed countries. I have seen it; I have lived in both settings.
Alaba: What would you say are the three key global health challenges, and the role of global health to address them?
Agnes: Going hand in hand with the issue of access, as a result we see the obvious health inequities in these settings. We have lower life expectancy for example, higher rates of mental health issues which are not even highly recognised in the developing countries, we see a lot of deaths that could otherwise be prevented if we were in developed countries. These are just some of the examples.
Another issue is the disparities in the management of covid-19. I think this is currently the highest priority issue that not only is it affecting developing countries but developed countries as well. However as with access to other health issues, we are still seeing that vaccines are not readily available in developing countries. We have countries like the USA who are vaccinating teenagers that are not as vulnerable as the elderly or even healthcare workers in developing countries. Yet again people from not so rich countries always have to come in last.
Also, I have seen especially in this covid-19 era is the inability to invest in health care workers especially in developing countries… again. Right as we speak Zambians in the diaspora are fund-raising to buy medical supplies for Zambian healthcare workers who are dying in numbers during the third wave of covid-19 pandemic. This issue was also experienced in developed countries where we saw healthcare workers dying or being at risk due to less supply of PPE. These people put their lives on the line and so many have died simply because their respective governments were unable to protect them, the world can do better to protect our frontline workers.
Alaba: What is the future for ASCA and plans for the remaining part of the year 2021?
Agnes: Our future looks very bright in terms of meeting our strategic plan objectives. One of the tasks that I have personally given myself is to ensure that we have smaller doses for hydroxyurea approved in Australia. As much as we have hydroxyurea in Australia, it has not been approved for use for sickle cell disease. Once it is approved for use for SCD in Australia, this will pave way for other smaller doses to be registered in Australia.
Of course, another major achievement is the conference that is pretty much done planning. I have sent you the flyer for you to advertise on our behalf. Going forward, this will be an annual event. We hope to have people from around the world join us for the face-to-face event one day, post covid-19
Alaba: How do you feel as an African in Diaspora making an impact in Australia?
Agnes: I feel honoured that I can advocate for a condition that predominantly affects people who look like me. This has been a major drive for me because I know just how hard it can be to be recognised in a country where you are the minority. In saying that it has not been an easy road, both in Australia and around the world. However, you push on because failure is not an option.
Alaba: What is your advice to policymakers and parents on SCD?
Agnes: For policymakers especially from less resourced countries: “let us make sickle cell disease a priority public health issue as it is affecting so many people of our own”. Over 10 years ago African WHO member countries signed a strategic plan to ensure that SCD was going to be professionally managed. Not all countries are doing this. Countries like Gambia do not even have a sickle cell policy nor hydroxyurea. Because of Amplify Sickle Cell Voices, one of the policy makers promised to work with SCD advocates in that country to ensure that they start working towards creating a policy. There is not much research and even simple monitoring techniques that are cheap enough for a country to afford, are missing. People are suffering, babies below the age of five are dying and it is about time that these countries put their priorities right.
For Parents, trust your instincts, if you believe something is wrong then it is probably wrong. Study your child and know what triggers the SCD crisis. Do not wait or doubt, ensure that you seek treatment right away. If you are not happy about the care your child is receiving, get a second, third or even fourth opinion until you are satisfied. Caring for a child with SCD is not easy but if you have a routine and know the triggers it gets better. Also work in partnerships with the treating doctors. If possible, try to understand the meaning of the blood test results. If you are not sure, ask questions from the doctors to tell you what they mean. Things like measuring the size of the spleen for your child is something that can easily be taught. Because if you know how to do this, you can act promptly when your child is having a splenic sequestration crisis, a life-threatening illness complication in children with SCD.
B I O G R A P H Y
Agnes Nsofwa is a Strategist and Global Health Advocate, the Founder of Australian Sickle Cell Advocacy Inc (ASCA). Through her personal experience as a caregiver to a child born with Sickle Cell Disease (SCD), she founded ASCA, a not-for-profit organisation supporting families impacted by sickle cell disease in Australia. She is also the founder of Amplify Sickle Cell Voices International Inc, a not-for-profit organisation whose aim is to give a voice to people from low resource countries and lower settlement areas sharing their experiences as sickle cell patients, caregivers, or healthcare providers. Through sharing, the aim is to find strategies that can alleviate these issues.
Agnes is also the creator of Sickle Cell Talks with Agnes, a Facebook Live show that brings sickle cell warriors and other stakeholders to share stories and education sessions by healthcare providers to raise awareness about sickle cell disease. A mother of four children, Agnes is a Data Analyst by profession but became a Registered Nurse to understand the hospital system and what their youngest daughter was going through while living with sickle cell disease.
She holds a master’s degree in Nursing from the University of Sydney, a bachelor’s degree in business from Edith Cowan University and a Diploma in Accounting. After chasing a cure for their daughter in three different States across Australia, their daughter was cured from SCD in 2019, through a Bone Marrow Transplant, 11 years after living with this disease. Their daughter became the first child to get a Bone Marrow Transplant for SCD HbSS at the Royal Children’s Hospital in Melbourne.
Opeyemi Adeyemi: Addressing menstruation stigma with her invention, The Flow Game
Opeyemi Adeyemi fondly called dryemz is a Public Health Physician and owner of the sexual health clinic which runs under O and A Medical Center Ogun State, Nigeria. She had her medical training in Sumy State University, Ukraine and MscPH from the University of South Wales. Opeyemi invented The Flow Game in an effort to address menstruation stigma and has written two books on sexual and reproductive health. Her foundation runs the Brave Boys and Girls club which travels around the South western part of Nigeria to provide sex education to children and teenagers in the effort to fight against public health issues like teenage pregnancy, STIs, HIV/AIDS and Sexual assault. In this interview with Alaba Ayinuola, she speaks on her social entrepreneurship journey, The Flow Game and why she is addressing sexual and reproductive health issues. Excerpts.
Alaba: Could you briefly tell us about yourself and your social entrepreneurship journey?
Opeyemi: I am a public health physician who is passionate about sexual and reproductive health. I am also the creator of the FLOW GAME which is West Africa’s first board game that teaches menstrual health. My journey started in 2017 during my NYSC program where I met with the impact of misinformation and lack of access to youth friendly sexual clinics had on teenagers and young people. This led me to the start of The Brave Boys and Girls Club tour around secondary schools where students are given age specific sexuality education free of discrimination and judgment. From touring, it gave birth to menstruation workshops, consent workshops and now creation of board games that are afrocentric and youth friendly.
Alaba: What inspired you to launch O & A Medical Center and The Menstrual Flow Game?
Opeyemi: The Sexual Health Clinic is under O and A Medical Center in Asero, Abeokuta where anybody regardless of your background, gender, sexual orientation or any other status can get care for sexual and reproductive health issues. We offer a wide range of services that are cost friendly for the average Nigerian. The Flow game was created because during the tour, I realized the power of menstruation stigma, so decided to involve the team of expertise and the girls from the club in the creation.
Alaba: What is the core issue you are addressing with the Flow Game?
Opeyemi: Menstruation is a subject that still has a great level of shame attached to it. Some cultures still see menstrual blood as dirty blood. Some girls use harmful products to collect their menstrual blood. The Flow Game is a fun way to teach menstrual health and hygiene. The game covers four main areas: the female reproductive system, menstruation and menstrual related health issues, menstrual products, pregnancy and contraception. Other issues touched on include sexual assault, consent and sexually transmitted infections.
Alaba: How have you attracted users and grown the platform from the start?
Opeyemi: The platform is currently being reviewed as the plan is to take it digital; decided to start with a board game as it is easier with the tours, besides an average Nigerian teenager might not have the resources to play the game online and did not want to miss out on these sets of people. The buzz around the game is increasing, the game was recognized on Menstrual Hygiene Day 2021 by the African Coalition for Menstrual Health Hygiene and the Indian Commissioner of Women Affairs during a conference held in Bangladesh.
Alaba: Data protection is a concern for users of health platforms. Could you explain your data protection policy?
Opeyemi: Right now we are are currently working on our policy but I can assure users that they would be protected besides the data page in design would require nickname, age, sex and email address.
Alaba: Would you expand in the direction of male health (fertility, contraception, etc)?
Opeyemi: Yes, in June, 2021. In a bid of getting a project with an international organization, the Play It Safe board game was created and it is currently being tested in the school tours. The game is for both genders and covers safe sex practices.
Alaba: As a social entrepreneur, what has been your biggest challenge up until now?
Opeyemi: The field I chose is still faced with a lot of stigma, so a lot of sensitization is involved, changing mindsets and cultures associated with it. The second I would say is finances, balancing the cost of production and the ability of the target community to afford the services rendered.
Alaba: The term Femtech is still quite new. What is your opinion of the state of Femtech industry and its growth?
Opeyemi: Femtech has had a massive impact on female health, so many innovative ideas that are gender specific. A good example are period tracking apps which have allowed women to track the menstrual cycle, have a better understanding of their cycle and make informed decision about fertility. I am happy to be in the industry and I know there is still so much more to be done especially in Nigeria.
Alaba: Where do you see the Flow Game and sexual wellness in the next 5 years?
Opeyemi: This is one question I keep asking myself every day, I desire to go beyond the Flow Game. Very few innovations on sexual and reproductive health tailored to the African woman. I would like to be one of the women creating sexual health innovations that are Afrocentric in the next five years.
Alaba: As an inspiring social entrepreneur, what piece of advice would you give to fellow female entrepreneurs?
Opeyemi: Invest in knowledge; learn from those who have done things in your desired field. Also understand that gender is nothing more than a social construct it does not define YOU, whatever you want to achieve is not tied to gender. Dream big and take steps to turn the dreams into realities.
Kasha Global Inc. secures $1 Million DFC equity investment to grow and scale across East Africa
Kasha Global Inc. beneficiaries (Source: DFC)
U.S. International Development Finance Corporation (DFC) today announced the disbursement of a $1 million equity investment in Kasha Global Inc., an e-commerce company that provides women’s health and personal care products to customers in Rwanda and Kenya, alongside investments from Finnfund and Swedfund. This investment was made through DFC’s Portfolio for Impact and Innovation (PI2) initiative, which aims to finance early-stage, high-impact solutions to challenges facing developing countries.
“High quality and equitable health services and products are fundamental to the wellbeing, and ultimately the economic potential, of women and girls in the developing world,” said Vice President for DFC’s Office of External Affairs Algene Sajery. “DFC is proud to support Kasha’s innovative business model, which is helping transform the personal care and health system supply chain in East Africa, and provide financing that strengthens economic growth in the region.”
“Kasha is excited to bring DFC on as an investor and as a long term partner,” said Kasha Global Founder & CEO Joanna Bichsel. “With the U.S. Government’s significant ongoing investments in the areas of Global Health and with DFC’s focus on supporting businesses proven to drive both commercial returns as well as social impact, we see strong win-win opportunities as Kasha continues to grow and scale across East Africa and beyond. We have been impressed with the level of support DFC is extending into emerging market businesses and into women-led and women-focused businesses.”
Many women in emerging markets lack access to safe, high-quality, and affordable health and personal care products as well as information surrounding these products. As products are often out of stock or counterfeit, the purchasing experience can be frustrating and disempowering for many women. Further, the stigma surrounding women’s health and personal care products in some cultures can have serious consequences. A UNESCO report estimates that one out of 10 girls in sub-Saharan Africa misses school during her menstrual period, amounting to as much as 20 percent of the school year.
Since 2016, Kasha has helped address women’s lack of access to health and personal care products by delivering a unique, discreet and user-friendly purchasing experience to the customers it serves. Through its e-commerce platform, Kasha has reconfigured the supply chain, delivery channel, and customer experience in order to meet demand. Kasha’s business-to-customer line of business directly sells products to customers in rural and urban locations across East Africa, especially low income communities. Kasha empowers over 400 local women to enter hard to reach communities to provide information and assist customers in purchasing products. The company’s business model is optimized to reach low income communities. Kasha has delivered over 1 million product units to over 130,000 unique customers, of which 63% are low income customers in Rwanda and Kenya.
Despite Kasha’s rapid growth and loyal customer base, fundraising is extremely challenging for start-ups in emerging markets, particularly during the COVID-19 pandemic. By investing $1 million in equity through the PI2 program, DFC aims to help Kasha fill the financing gap, providing the e-commerce company with the capital required to scale its business.
DFC’s investment advances its 2X Women’s Initiative, which has committed more than $4 billion of investment in projects that empower women in developing countries. The Kasha investment also qualifies for the 2X Challenge, an initiative of the G7 countries to support women’s economic empowerment. Kasha was co-founded by two women, 50 percent of Kasha’s senior leadership team are women, 75 percent of board members are women, 64 percent of Kasha’s employees are women, and the company’s products center around care for women and girls. Based on Kasha’s commitment to the 2X Challenge criteria, Kasha, DFC, Finnfund and Swedfund have signed a side letter which highlights Kasha’s 2X accomplishments and sets an example for other companies that seek to improve their businesses using the 2X Challenge criteria.
By focusing on innovative care delivery models and supply chain innovations, DFC’s financing also advances the agency’s Health and Prosperity Initiative, helping respond to COVID-19 and other health-related issues in Rwanda and Kenya.
Swedfund is Sweden’s development finance institution. Finnfund is the Finnish development finance institution.
Play Zuri Health launches its first mHealth App to help provide affordable and accessible healthcare solutions
Play Zuri Health Limited Mobile App (Source: Zuri Health)
Play Zuri Health Limited, a branch of the Play Communications Limited announced the launch of their first mobile app, Zuri Health; that can be downloaded from the Google Play Store, Apple Store as well as the Zuri Health website.
Zuri Health’s mission is to provide certified, affordable and accessible healthcare solutions via mobile with dedicated apps, wap and SMS services based on availability, location and specialization of the medical providers.
Users will have access to a myriad of professionals and services from across their home counties. They are able to book appointments instantly with any medical professional or hospital within their geographic regions, book laboratory tests, chat with the practitioners via both message and video as an added feature and request for home visits by the Licensed and Certified Medical Practitioners.
Under Pharmacy, users can get their prescription and over the counter medication online and have it delivered to their doorstep.
The SMS service functionality of Zuri Health has been designed to reach a wide range of individuals or users who may not have access to WAP or internet enabled devices.
The app’s code was written with the daily challenges patients face in the journey of seeking affordable and accessible healthcare solutions. We solve the problem of expensive and inconvenient hospital trips for small or minor diagnosis and prescriptions, long waiting times and queues during doctors’ visits and appointments scheduling and booking which can be tasking.
Through our mobile app, we also help doctors to tap into a wider market of on-demand patients and earn extra money while saving lives.
“Zuri Health App is very personal to me. Millions of people in Africa do not have access to quality medical care. At Zuri Health we have taken time to develop a product that will fill that gap, giving doctors a wider and easier platform to reach patients who need them. With Zuri Health the underserved populace can now access affordable and sustainable healthcare.” Arthur Ikechukwu Anoke- C.E.O and Co- Founder Zuri Health.
Daisy Isiaho Project Manager and Co-founder in an interview said, “In my view, there is an urgent need to drive more meaningful conversations in relation to frameworks around Telemedicine because in Africa very few countries have these yet its fundamental if we should achieve the Sustainable Development Goals.”
Since the beta launch in November 2020 the company’s predicted three year growth plan is to have more than 20,000 registered doctors listed, 250,000 premium users and at least 1,000,000 mobile downloads.
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