Sickle Cell Disease Educational Resources Initiative(SERI)- Our Story
Sickle Cell Disease Educational Resources Initiative(SERI)
Every year, nearly 300,000 children are born worldwide with this most painful disease and many of them will not survive beyond their fifth birthday. Discovered more than a century ago, Sickle Cell Disease (SCD) is an inherited genetic disease that is transmitted when both parents who carry hemoglobin S transmit it to their child.
SCD comes with many complications such as high blood pressure, kidney failure, kidney stones, growth delay, bone necrosis, stroke, retinopathy and increased risk of infection and sepsis. Treatment options include medications to manage the symptoms and blood transfusions to replace the sickled cells. A stem cell also known as bone marrow transplant might cure the disease. However, this procedure usually involves patients to have a matched donor, such as a sibling, who doesn’t have sickle cell anemia.
Both Agnes Nsofwa and Biba Tinga(Founders of The Sickle Cell Disease Educational Resources Initiative) gave birth to children with SCD type SS. Like all caregivers of children with a chronic illness, they had to face many challenges while managing their children’s health. Agnes, has a little girl who received a bone marrow transplant and was cured from SCD a year ago; She left a career in Business, trained to become a Registered Nurse in order to better understand the disease and care for her daughter. She fought hard for over 10 years to get her cured. Today her little girl is Sickle Cell free, but Agnes is still advocating for others who are still affected by SCD.
Biba has a young adult son living with SCD, but he is not a candidate for a bone marrow transplant to get cured. He will have to keep fighting every day of his life to stay healthy. As a treatment, he regularly receives Red Blood Cell exchanges or apheresis which allows him to avoid the terrible pain crisis. Their journey which started in Niger continues in Canada.
When they met for the first time in January 2020 in Amsterdam, they quickly realized they had been fighting the same battle. They have both been engaged in their respective communities, advocating on behalf of other families dealing with the same condition. Their combined years of experiences has taught them the need to unite. Because when life becomes a struggle, you engage with family. And sometimes family is someone who shares your life journey. After a short discussion, they knew they were going to join forces against this common cause and become friends.
Agnes had started the project translating sickle cell materials into her native language of Bemba from Zambia since 2018, in order to help others to better understand and care for their children since. When she shared this idea with Biba, she instantly agreed to come on board because she had also been sharing information in her native languages of Zarma and Hausa with parents of affected children.
Together they want parents, to have access to information so that they can make the best decisions to care for their children. To do this, they created SERI, Sickle Cell Disease Educational Resources Initiative, a platform of educational and informative resources on sickle cell disease in various languages.
As they present it, “we created SERI because without education we could not have looked after our children properly. We want all mothers to have what we did not have. SERI is more than a platform; it is also a movement for awareness and education. Whether you speak Bemba, Tonga, Hausa, English, French, Yoruba, Arabic, Hindi, Twi, Spanish or any other language, SERI will offer the information in the language you understand.
SCD requires long continuous care. When the parents or the patient does not understand the basic information, the consequences could be fatal. SERI will also provide audio recorded version in the local languages to ensure that those who cannot read and write can listen and still receive the education that will empower them to better care for themselves.
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SERI will also share the stories and the experiences of those who are fighting SCD because their stories matter.
The stories will tell our journeys, the stories will say who we are. We are SERI!”
Visit: Sickle Cell Disease Educational Resources Initiative(SERI)
aYo Zambia launches Family Cover in response to ‘overwhelming’ demand
aYo Zambia CEO, Andrew Nkolola
microinsurer aYo Zambia has has just launched Family Cover, which allows Zambians to get hospital and life cover for themselves as well as their direct and extended families without filling in a single form. The new product will also see all premiums collected (and claims paid) via the MTN Mobile Money (MoMo) platform. Until now, aYo has offered hospital and life cover to individuals only through two insurance products, ‘Send with Care’ and ‘Recharge with Care’. But a growing market demand for insurance for the whole family prompted the company to create the new Family Cover product, which allows policy holders to add up to seven people, including themselves.
“As of today, we have had over 3.5 million customers purchase cover to protect themselves for hospitalisation in the event of illness or injury, or loss of life,” said aYo Zambia CEO Andrew Nkolola. “But many of our customers have been asking us: ‘How will we safeguard our children and families if something happens to them? We don’t want benefits only when something happens to us.’ We realised it was a huge gap in the market and have responded accordingly.”
As with aYo’s existing products, Family Cover customers must maintain active Mobile Money (MoMo) accounts to pay premiums and claim. This will allow them to insure up to three other family members per benefit, for a total of seven people. Family Cover allows policyholders to add extended family as well as direct relatives between the ages of 1 and 69.
Customers can enrol family members by dialling the USSD code *296* and selecting the Family cover option to enrol and manage cover. As with ‘Send with Care’ and ‘Recharge with Care’, valid Family Cover claims are paid directly to the claimant’s mobile money wallet without any hassles.
aYo was recognised as the Most Innovative Ecommerce Product in Zambia by the Institute of Finance and Economics in October, and followed that up in November with three awards at the Pensions and Insurance Authority Industry awards: Microinsurance product of the year, Best Customer Centric Experience, and Product and Service Innovation of the Year.
“The market perception of insurance in general is changing. Today, every Zambian consumer can purchase insurance on the go, using their mobile phones. Offerings like Family Cover provide a much-needed social safety net that helps vulnerable people and particularly people with low incomes to stay afloat when the unexpected happens,” said Nkolola.
mPharma acquires majority stake in HealthPlus
mPharma, Africa’s leading patient-centered technology-driven healthcare company, has acquired the majority stake in HealthPlus, the leading pharmacy chain in Nigeria. mPharma and the former investor, Alta Semper, have signed an agreement leading to the acquisition of a majority stake in the HealthPlus Group.
According to the Chief Executive Officer and Co-founder of mPharma, Gregory Rockson, the acquisition is in line with the company’s mission to build an Africa that is in good health by delivering life-changing healthcare services and drugs to improve health outcomes for patients. He stated that the acquisition of the HealthPlus Pharmacy chain by mPharma complements mPharma’s deep commitment to increasing patient access to affordable and quality healthcare in Nigeria.
“mPharma is deepening its long-standing commitment to Africa by reimagining primary healthcare in some of the most vulnerable communities on the continent. We continue to transform community pharmacies into primary care centers to provide affordable and accessible healthcare to all patients so they can live not just longer but healthier lives. We are optimistic about the future of healthcare for Nigerians through the acquisition of HealthPlus.”, said Rockson.
In her remarks on the acquisition, Afsane Jetha, Co-founder and CEO at Alta Semper Capital, said: “We are delighted about HealthPlus’ partnership with mPharma. We have a strong conviction in mPharma’s strategy of revolutionizing primary care across Africa and believe mPharma is the ideal steward for HealthPlus’s next chapter of growth. We believe mPharma’s vision is consistent with that of HealthPlus’s shareholders and employees, and we are enthusiastic to support the business through a relationship with mPharma going forward”.
While mPharma plans to continue to keep and strengthen HealthPlus as Nigeria’s leading pharmacy brand in Nigeria, the acquisition will also provide expansion opportunities for mPharma within Nigeria and a platform to expand mPharma’s mutti pharmacy retail footprint across the continent through its fast-growing QualityRx program. Powered by mPharma’s proprietary Bloom software, HealthPlus will provide patients access to affordable primary care services within its pharmacies, in addition to affordable and quality medications it currently retails across 12 states in Nigeria. The HealthPlus pharmacy chain will also launch mutti®, mPharma’s health membership program, which will provide both existing and new customers with discounts, interest-free “heal-now-pay-later” plans, free health screenings, and other primary care services.
By combining HealthPlus pharmacies with mPharma’s growing portfolio of partner mutti pharmacies and GoodHealth shops (PPMVs),mPharma’s network will grow from 224 to over 320 health facilities in Nigeria and will provide care to more than 100,000 Nigerians each month.
Chantel Cooper: The Epitome of Empathy and Care
Chantel Cooper, CEO of The Children’s Hospital Trust (Image: Supplied)
Chantel joined the Children’s Hospital Trust in 2013 as the Head of Fundraising and Communication and was appointed as CEO in 2019. For her, 2020 was a year that reinforced the importance of the core purpose of the Trust and the difference the organisation wants to make in the lives of children. “Our cause is driven by the need to make a difference in the lives of sick and injured children. We are people who work together to save the lives of the children who matter. We all have a purpose!” she says.
Sharing excerpts from her journey, Chantel says:
“My purpose in life is to serve those who are most vulnerable: women and children. My career was driven by my passion to make a real difference in the lives of women and children. When I was 18 years old, I volunteered for an organisation that provided support for women who had been raped. While volunteering, I started working with women in rural areas in the Eastern Cape where we found opportunities to grow their businesses.
“My passion for women led me to Cape Town where I became Director of Rape Crisis Cape Town when I was 27 years old. After the birth of my two children, I moved to an organisation called St Joseph’s Home for chronically Ill Children. St Joseph’s is a step-down facility for tertiary hospitals like the Red Cross War Memorial Children’s Hospital. It was a profound move for me as I was able to work with children who inspired me.
“One of the most valuable lessons I learnt is the power of love. You can offer a child the best healthcare in the world, but what a child wants most is their parents to love them and be by their side. This is the value I most appreciate about the Red Cross War Memorial Children’s Hospital and my past experiences. This hospital believes in child-centered care and knows that a child heals when their parent or caregiver is by their side – even during the COVID-19 pandemic. All other hospitals had restricted access to patients, but the presence of a parent is imperative to their sick or injured child’s healing.”
“The COVID-19 pandemic taught our team that life can change in a blink of an eye and that we need to be prepared for all possibilities. The pandemic hit the world with such speed and velocity that we had no choice but to find a way to not only sail through the storm but also find ways to get out of the situation stronger than before.”
Chantel also states that 2020 provided the Children’s Hospital Trust with the opportunity to learn extraordinary lessons that they would not have normally had the opportunity to learn and some of these include:
- The value of deep listening and the importance of demonstrating kindness.
- Working in collaboration created the opportunity for meaningful impact for our beneficiaries.
- Opportunities do exist during challenging times; positivity exposed the opportunities.
- Adapting to change during uncertain times helped to build a resilient team.
“Our Trust team demonstrated ingenuity, compassion, resilience, commitment, and fortitude during a very difficult time. As a result, we surpassed our goals, and this enabled our organisation to reach more children and families. We are grateful for the contribution from every individual,” adds Chantel.
“Walking through the corridors of a children’s hospital during a crisis gave perspective on the real value of care, kindness, and collaboration. While children were not the face of the COVID-19 pandemic, the Social Work Department experienced first-hand the profound impact the pandemic had on children’s health and well-being.
“Unemployment, food insecurity, child safety and schooling were common concerns for many patients and their parents who entered the doors of the Hospital. The Red Cross War Memorial Children’s Hospital values patient and family-centred care which includes care for the whole family from a holistic perspective.
“In response to the needs of the families, the Trust secured funding to enable the social workers to provide additional counselling services and material support such as the provision of food, hygiene, and home-schooling supplies to vulnerable families when children were discharged from the Hospital.” Read more on the Family Care Project here.
The core to achieving our vision is upholding our values of Integrity, Accountability, Kindness, Dynamism, and Collaboration in every aspect of our work. The Trust has a sound financial record in administration and good governance. For the past 28 years, we have raised funds to address many pressing needs, but much has yet to be done. With the help of many donors, we continue to give hope and healing to our little ones who need it most.
The Trust raises funds for the upgrade and expansion of the Hospital’s buildings, the purchase of state-of-the-art medical equipment, and new medical treatment projects and funds the training of medical professionals across Africa – ensuring that the Hospital not only retains its world-class stature but is able to continue providing life-changing and life-saving care for children.
The Trust relies on donations to fund these needs. When you donate to the Trust, 100% of your donation goes towards funding projects that change children’s lives (and the lives of the people who love them). The operational costs of the Trust are funded from an endowment, so your generous contributions are never used to cover administration costs.
Donate to the Children’s Hospital Trust today! www.childrenshospitaltrust.org.za