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

• Infections
• Anaemia
• Priapism
• Strokes
• Retinopathy
• Leg ulcers
• Gallstones
• 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.

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