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.
Calvin University Appoints Adejoke Ayoola Founding Dean of its School of Health
Calvin professor of nursing Adejoke Ayoola, PhD, RN, FAAN (Image & Article: Calvin)
Calvin University has appointed Adejoke Bolanle Ayoola as the founding dean of its School of Health. Ayoola stood out among the high caliber candidates reviewed by the search committee – a team which included Provost Noah Toly and representatives from each department and program in the School of Health.
Ayoola is nationally and globally recognized as an experienced practitioner, educator, researcher, and administrator. She earned her bachelor’s and master’s degrees in nursing from Obafemi Awolowo University in Nigeria, and earned her PhD from Michigan State University. Ayoola has been a member of Calvin’s faculty since 2007, contributing to both the nursing and public health programs and most recently chairing the nursing department.
“Dr. Ayoola not only met but also clearly excelled in the critical leadership requirements established by the committee,” said Toly. “She has a vibrant Christian faith, possesses a deep understanding of the Reformed tradition, models a prayerful life, and demonstrates a commitment to joyful integration of faith and learning.”
Accomplished thought leader and scholar
Ayoola’s academic influence runs deep, as she has contributed to her field with research in the areas of community based nursing, and maternal and infant health. Since completing her PhD, Ayoola has earned several awards and distinctions recognizing her accomplishments in the health field.
Notably, from 2012–2015, Ayoola served as a Robert Wood Johnson Foundation Nurse Faculty Scholar. The program, involving intensive leadership training, was created to inspire the next generation of national leaders in academic nursing. Five years later, Ayoola was inducted into the 2020 Class of Fellows of the American Academy of Nursing.
Ayoola is a member of the American Association of Nurses, the Honors Society of Nursing, Sigma International, and the Midwest Nursing Research Society; and she currently serves as a reviewer, associate editor or on the editorial board of 12 scholarly publications.
Guided by God
For Ayoola, the field of health has always been a passion, and it is a passion that is rooted in her faith.
“I am motivated to act when I see people or members of my community hurting —physically, emotionally, and spiritually – and when the vulnerable population experience health challenges,” she said. “I see health as an important part of what God wants for us.”
Ayoola believes that it is God who equipped her with the skills needed for this position, not only through her academic experiences, but also through her community work such as leading the African Ladies Fellowship of the African Resource Center in Grand Rapids and serving as an elder in her home church, Brookside CRC.
Carrying on Calvin’s mission
“Dr. Ayoola is deeply committed to the mission and vision of Calvin University,” said Kerrie Berends, kinesiology department co-chair and professor, and member of the search committee.
Ayoola has demonstrated this commitment by playing an integral role at Calvin, participating herself in a search committee for the dean of the School of Business, founding H.E.A.L.T.H. Camp at the university, and serving on the task force that articulated a vision for Calvin’s university structure – to name just a few contributions during her 15 years of service. Former advisees, research assistants, and research fellows recognize Ayoola for her commitment to their learning and post-graduate success.
For Ayoola, this next vocational step was confirmed by God’s guidance through prayer. She believes her vocation also includes preparing others well for work in the field.
“My vision is also for the experience in the School of Health to be transformative and for our future health professionals to be well-prepared in their calling to serve as great advocates for their patients,” she said.
Building on collaboration and partnerships
Beginning July 1 Ayoola will lead the School, serving approximately 600 undergraduate and over 75 graduate students studying directly in health-related programs, and dozens of other students in pre-professional tracks.
While the School is already involved in many community partnerships and collaborative scholarship, with Ayoola at the helm, colleagues say it is poised to broaden its impact.
“Dr. Ayoola has prioritized interprofessional collaboration among our departments, West Michigan communities, and globally,” said Berends. “It’s exciting and energizing to anticipate the impact that faculty and students will have as we expand our reach.”
Ayoola is ready for the challenge.
“I love creatively designing new programs in collaboration with people and in response to identified needs,” she said. “The idea of serving as a founding dean of the School of Health is exciting because it will provide me with opportunities to work with stakeholders to shape the School of Health’s programs.”
World Blood Donor Day 2022: Fighting apathy of voluntary blood donors in Nigeria
World Blood Donor Day, highlights the importance of blood donation in medical care and appreciate voluntary non-paid donors for their selfless gifts. This year’s theme from the National Blood Transfusion Service (NBTS) is “Donating blood is an act of solidarity” in recognition of how blood donation remains an altruistic gesture of kindness from one person to another.
Blood cannot be manufactured in a lab. There are currently no medical alternatives to blood donations for patients in need. These include women in labour, neonates, surgeries, diseases like sickle cell anaemia, cancer and leukaemia. Most urgently, blood is required for accidents and emergencies as witnessed following the recent terrorist attack in Owo, Ondo state, where dozens of blood donors were needed to help victims.
Despite its importance to sustaining life, Nigeria still grapples with insufficient blood and blood products nationwide due to lack of voluntary blood donation. The reluctance of individuals who are potentially eligible to donate blood is regarded as donor apathy. With an annual need of up to 1.8 million units of blood, the NBTS collects only about 66,000 units per year, leaving a deficit of more than 1.7million pints of blood. This is despite a population of approximately 200million, out of which over half are young people-the best demographic to donate blood.
Voluntary donors are safer and more reliable than people who are paid or coerced into blood donation. However, voluntary donors remain critically low for various reasons: limited information on where to donate, poor hospital reception, cumbersome protocols, limited opening times, inadequate donation centres and long waiting times. In major cities like Lagos, full of heavy traffic and working people, blood donation needs to be easily available on evenings and weekends.
The fear of needles, getting infected or sick after donation also prevents some potential donors. This rarely happens and the ease and safety of blood donation needs to be greater amplified through advocacy, especially targeting the youth.
In addition, the lack of commitment to blood donation can be attributed to distrust of the health care system, especially health workers who oversee the collection, storage, and distribution of blood. Health workers are sometimes reported to trade voluntarily donated blood for cash from blood recipients. These few bad apples also disincentivises voluntary donors. The insufficient supply of blood leads to hospitals rationing blood or even recruiting paid donors, which is unsustainable for our health care system.
Finally, socio-economic and security challenges continue to remain a hindrance to voluntary donation. As a significant percentage of the population grapples with meeting basic needs, persisting unemployment, rising poverty, and general insecurity, finding the time and self-sacrifice to go and donate blood for strangers can be a hard encouragement.
To solve these complex challenges, countries have invested significantly in improving citizens’ knowledge of voluntary blood donation and its importance for the sustenance of lives. They have developed systems to make donation easy, where donors are assured of their safety and that their donation will save lives. World Blood Donor Day serves as a reminder for all stakeholders, government, NGOs and healthcare workers to work together to appreciate blood donors for their life saving gift of blood.
Advocacy organisations such as Haima Health Initiative continue to work on educating the public on the importance of blood donation and facilitating the process for donors and patients including timely delivery of blood.
OpEd: By Muhammed Nurudeen, Donor Recruiter, Haima Health
COVAX surpasses 1.5 billion COVID-19 vaccine deliveries
Today, COVAX has surpassed the milestone of 1.5 billion COVID-19 vaccines delivered around the world, following a shipment of 2.26 million doses of the Johnson & Johnson vaccine to Tanzania. A little over 15 months since its first international delivery to Ghana, COVAX has now shipped COVID-19 vaccines to 145 countries across the world.
Nearly 90% of these have been fully funded doses delivered to lower-income countries supported by the Gavi COVAX Advance Market Commitment (AMC). COVAX is the major supplier of COVID-19 vaccines in low-income countries and humanitarian settings. As the largest and most complex global vaccination effort in history, COVAX’s work has helped raise the proportion of people in 92 lower-income countries protected by a full course of vaccines to 46% on average.
Dr. Seth Berkley, CEO of Gavi, the Vaccine Alliance, which manages the COVAX Facility and the Gavi COVAX Advance Market Commitment (AMC), and leads on procurement and delivery at scale for COVAX, comments on this milestone: “This is a significant milestone for COVAX, set up as an unprecedented global collaboration during the worst public health emergency in a hundred years, but more importantly, we are proud to have contributed to the incredible achievements of lower-income countries, who have administered nearly 4 billion doses of COVID-19 vaccines in a truly historic global rollout.
Tanzania is a fitting example of the hurdles that have been overcome and the challenges that remain: the pandemic is not over, and we must remain committed at all levels to pushing coverage rates higher, focusing on ensuring those at high risk are fully protected. With plentiful global supply now available to support this effort, the next 3-4 months are crucial. We call on countries to set ambitious targets backed by concrete plans for implementation and on all partners to provide countries with the resources needed to accelerate and expand national strategies.
COVAX remains committed to working with partners to ensure lower-income countries can access both vaccines and the support needed to turn these vaccines into vaccinations.”