Lea Masamo is a patient-advocate working to make sickle cell disease (SCD) a global health priority. As the leader of the Africa Sickle Cell Organisation, she works in marginalized communities in Kenya to educate, advocate, and guide local governments on the development of programs and policies related to SCD. Her passion for bringing patient voices to the decision-making table led to her appointment as Kenya's Sickle Cell Champion. We caught up with Lea ahead of Aspen Ideas: Health 2022 to learn about her big idea and how she's putting it into action.
Tell us about your big idea!
Sickle Cell Disease (SCD) is 100+ year old disease which has seen little progress on gains in Africa and globally. The conversation has largely been led by doctors and scientists most who come from the global north, with a noticeable absence of people living with Sickle Cell. My big idea is building a movement of empowered sickle cell patients to inform SCD policy and decisions in Africa.
You have been called “Kenya’s Greatest Sickle Cell Disease Advocate”. What has inspired your work to ensure patient voices are represented in local, national, and global decision-making related to SCD?
I was born into a family where 3 of 4 of us have sickle cell. Living with and in a family where sickle cell was center stage inspired most of my professional work and my vision to make sickle cell a global health priority.
SCD patients and caregivers, families and communities bear the biggest burden of this disease. Lack of access to care, stigma and discrimination, cognitive, psychosocial and emotional challenges, unemployment, disrupted school attendance and catastrophic out-of-pocket health expenditure are some of these burdens. They perpetuate the poverty cycle and reduce quality of life of patients and families.
I believe the people who bear the greatest suffering brought about by sickle cell should be part of the decision-making processes. Their experience and expertise provide a barometer upon which decisions affecting their good health and well-being are determined. This inclusion is necessary to save millions of lives as well and to achieve sustainable development goals and targets. The power in the lived experience is seen in patients’ ability to define and solve problems.
Living with sickle cell provides this impetus to solve problems. The representation of patients locally, nationally and globally means we transform what has largely been a donor-led sickle cell response to a global, regional, national and local response that is community-centered and community led.
As a person living with SCD, what are the top three things you wish more people understood about the disease?
Sickle Cell Disease (SCD) is a deadly disease that is simple to manage if treatment starts early and is available throughout the continuum of care. However, the vast majority of patients in Africa with SCD are never diagnosed. Although up to 90% of children born with sickle cell die before their fifth birthday in Africa, sickle cell patients can live a full life well into their 40’s and 50’s. We find inspiration in the late Asiata Onikoyi-Laguda, a woman living with sickle cell in Nigeria who passed on at the ripe age of 95.
The global, regional and national prioritization of Sickle cell means addressing global health inequities. It is key to achieving the SDGs “Leave No One Behind” agenda and WHO’s commitment to Universal Health Coverage. To achieve NCD targets and SDGs the world needs national, regional and global inclusion and prioritization of diseases that have been long neglected, like SCD. To ensure everyone has a chance to enjoy the right to health no matter their geography, their age and disease they live with.
Tell us about the impact the Africa Sickle Cell Organisation has had in Kenya. What changes have been influenced by your patient-advocates?
Before its inception ASCO photo documentary of people living with Sickle Cell was carried out. A total of 400 monochrome portraits and oral narrative experiences were taken and recorded from remote sickle cell prevalent communities in Kenya
These research findings provided justification for policy and health system strengthening around Sickle Cell. There has been progress resulting in creation of National Healthcare Management Guidelines in Kenya for Sickle Cell. Furthermore, these findings initiated the advocacy for provision of UHC (Universal Health Coverage) for the SCD patients considered uninsurable in Kenya.
ASCO was initiated in 2018. Due to the devolved nature of healthcare in Kenya, we focused on high sickle cell burden county in Kenya to improve access to sickle cell care. The organization has raised $100,000 worth of strategic partnerships to establish a robust sickle cell program in Taita-Taveta county serving a population of 400,000 people
With two clinics at the tertiary and primary level facilities in rural area of Voi and Taveta. We have ensured availability of affordable essential medicines for sickle cell and early diagnostics. ASCO has provided health insurance to 50 poor sickle cell households of 200 people with free access to care. Through advocacy and programming, ASCO has strengthened health systems at the rural and community level. Where service providers and other health system actors have capacity in skill and resources to ensure equitable service delivery
ASCO has created a scalable model where we equip patients and caregivers with skills and resources to reduce sickle cell suffering and achieve their fullest potential. People living with sickle cell then inform system and policies in places closest to them.
What impact has the COVID-19 pandemic had on people living with SCD and your work?
COVID-19 had both positive and negative impact on people living with sickle cell and our work.
The Good: With the disruption of supply chains and health services, we lacked access to sickle cell care. During this time we noticed the only constant is the person living with sickle cell. As health systems buckled under COVID-19, patient support networks stood strong mobilizing, advocating and holding government accountable to re-open clinics, ensure access to medicines and social protection to rebuild livelihoods and families. This helped us crystalize our organizational strategic priorities to build and strengthen sickle cell grassroots networks that proved to be fundamental to our sickle cell programs.
The Negative: In the initial weeks of COVID-19, travels to the capital and cross border movement was halted, public hospitals regular clinics including SCD clinics were discontinued. This affected positive gains made by patients on their health outcomes. Majority resorted to using traditional medicine alternatives for SCD management.
ASCO works in an agriculturalist community that depends solely on income from farming. The community experienced adverse economic losses in. With acres of ripening produce with no market and income that would support the increased household consumption. Loss of income and lack of access meant the organization had to re-prioritize it’s focus and budget to provide basic needs i.e. food and medicine. We now have a contingency fund on access to care and food security for our beneficiaries.
Even with the good, it was still clear that SCD is still left behind. Working in rural poor communities means we have to go an extra mile to mobilize resources that enable us to participate is spaces where decisions are made.
Why don’t you think the proper attention has been given to SCD as a global health priority?
The manifestation, definition and stratification of sickle cell in ethnic and racial lines predispose this population to structural racism.
Structural racism aka racial inequity is one of the biggest deterrent of Sickle Cell progress globally. Africa suffers institutional racism (systemic racism) stemming from its colonial legacies. We have inherited colonial systems, policies and power structures. Where medicine, research and access to healthcare was prioritized by and for colonialists and settlers. Who despite creating measures to tackle infectious diseases they were predisposed to i.e. Malaria and cholera, gave least priority and neglect to genetically ‘African diseases’.
These systems and structures still persist until today. They are seen in centralization of access of quality care in urban centers, transplantation of SCD therapies from the global north and a lack of strategic investment for SCD policies in SSA. This affects the ability of sickle cell patients to access equitable care.
What gives you hope for the future?
Sickle cell is growing as a space. There’s is more investment especially from non-traditional donors in non-traditional flexible trust based ways. There is more research towards a sickle cell cure and development of new affordable safe treatments and sickle cell medicines.
The access to the internet continues to grow in Africa. Communities that have been geographically and technologically marginalized are now able to be part of virtual conversations. This also helps in cross-border network building of people with sickle cell
I feel like I’m in the best health and shape to commit more time and energy in innovation, relationship building and travel. I am confident in what problems I am solving for people living with sickle cell and how to scale this. It has taken close to 10 years to figure this out. Yet, there’s still loads to learn.
I believe the world is listening. There are many unexpected relationships being made through this work and platforms such as these. Things can change and are changing for sickle cell in Africa.
The views and opinions of the author are their own and do not necessarily reflect those of the Aspen Institute.