What I Believe Will Drive Meaningful Sickle Cell Change in 2025"

2025 has an air of possibility. It feels like I am heavily pregnant, in the final stages of my final trimester.

Similarly to sickle cell, 2025 will be a momentous year.

The stage has been set for sickle cell to bear fruits of previous years. We have like minded allies in the same boat, rowing together, in the same direction.

We have never been more united as a community.

In this time and with this exciting and powerful wind in our sails, I believe there is potential to drive exponential meaningful change for sickle cell.

Here are some actions I believe will move further in 2025:-

Access and uptake of proven therapies

Increase the access and uptake of therapies like hydroxyurea and red cell exchange. They have improved health outcomes but are still not accessible everywhere. Uptake from prescriptions, adherence, and affordability are still a big problem. Addressing this issue is the beginning of improving health outcomes for all.

Newborn screening

We need systematic, not random newborn screening programmes and linkage to care. Newborn screening is happening. Many silo themselves within stand-alone programmes. And rarely feed into national registries and data systems. Governments are missing critical data that will inform healthcare delivery. It also fails to link patients and their families to care and support networks.

Empowered patient community

Change is only possible with a self-aware and educated patient community leading change. Beyond knowing what they want and how they want it, they are critical drivers of sickle cell change. Being healthy is the best gift you can give yourself. Learn how sickle cell manifests in your body. Then control habits and behaviours that discourage good health. Increase what improves your health. Educate yourself on how to speak and articulate your needs. To your family/friends, your doctors, your community and decision makers, i.e. your employer. These are the steps you take to become your biggest advocate and an advocate for others. Educate yourself thoroughly and share your thoughts publicly about sickle cell. Become better each day.

Collaborative and meaningful patient involvement

Enhance collaboration that values and engages the expertise of sickle cell communities. More partners in the sickle cell space are building systems to better engage sickle cell communities. I encourage partners to take a step further and let people living with sickle cell lead. Equip us, resource us, and allow us to innovate and lead. "Give a man a fish, you feed him for a day. Teach a man to fish and you feed him for a lifetime." In the same way, empowering communities allows for increased ownership, collaboration, and accountability. A sustained sickle cell response isn't top-down but balanced. With parties at the grassroots to global working in collaboration.

Broader efforts for Sickle Cell education and advocacy

I look forward to sickle cell education and advocacy moving beyond the SCD echo chamber. We are swimming in a narrow channel, instead of the ocean. We must move beyond our circles. We need to reach larger health spheres and even beyond health. Disease affects more than our bodies. It shapes our households, communities, and lives. It weaves itself across all facets of existence. We are at a time where we all need to take our positions in global health platforms and priorities. This is not only the burden of an individual but a collective burden that must be borne by the world. If we are, to indeed leave no one behind.

A wholistic response to sickle cell

Sickle cell is an adult disease as much as it is a childhood disease. Yet, our health systems and patients remain unprepared for the challenges of the maturing and ageing patient. There is focus dedicated to children with sickle cell, rightfully so. We need to take deliberate steps, giving attention to life stages i.e. adolescents, young adult, mature and geriatric adults. A whole-life approach to sickle cell to address the health limits and nuances of each life stage. And allows patients to survive and thrive with sickle cell.

Increasing resourcing towards locally led sickle cell organisations

Sickle Cell community based organisations face the biggest inequities in funding. This has led to an under-invested civil society, low issue visibility, and a limited impact of sickle cell programmes. Funding organisations must work with leaders close to the problems they want to solve. We can have amazing therapies, hospitals and awareness efforts. but without ownership by communities fuelled by local efforts, we are boiling the ocean. Funding for sickle cell organisations builds capacity to drive sustained change in communities.

I welcome partners, collaborators, allies and the entire sickle cell community to continue walking and working together this year.

Is there anything else you would add to this that will drive meaningful change in 2025? Let me know in the comments.

Lea.