OneSCD: A Global Partnership to Advance Equity and Transform Sickle Cell Care

Sickle cell disease affects nearly 8 million people worldwide. Yet where a child is born can still determine their access to diagnosis and care. Leaders across healthcare, governments, UN agencies and civil society are joining forces to change that. Coming together as one

Distinguished representatives of member states and head of agencies, colleagues, partners, members of civil society, and most importantly, people and communities affected by sickle cell disease. Welcome to the official launch event for One SCD, a global partnership to advance equity and transform sickle cell care. Today marks an important moment in a journey that has brought together governments, global and regional health institutions, civil society, technical partners, and people with lived experiences around a shared ambition to accelerate action on sickle cell disease and strengthen coordination around country-led priorities. One SCD. is designed to build on and connect the important work already underway, aligning partners, sharing knowledge and experience, mobilizing resources, and supporting countries to expand equitable, comprehensive sickle cell care throughout the life course for children and families worldwide. My name is Helga Fokstad. I'm Director of Health Programs at UNICEF, and I'm delighted to co-moderate today's event with my partner in crime, Dr. Carlos Rodriguez-Orlando, Executive Vice President of St. Jude's Children's Research Hospital. So over to you, Carlos.

Thank you so much, Helga, my partner in crime, yes, for sure. And so thank you to the government of Nigeria for bringing us together today. So Minister Salako, distinguished leaders, colleagues and partners, we are so grateful that you are all here, that we are all together. But before I begin, I want to reflect briefly on the momentum that brought us to this moment. So just a year ago, at the 2025 United Nations General Assembly, sickle cell disease was finally included in the UN political declaration of non-communicable diseases, alongside a new ambition to improve survival for children affected by the disease. So our task now is to turn that commitment into action. And that work must begin by listening to those whose lives are directly affected. And so it is now my honor to invite Dr. Izak Saleh, the Minister of State for Health and Social Welfare of the Federal Republic of Nigeria, to deliver our official welcome. So Nigeria's leadership in bringing us together today reflects the country level commitment that will be essential to this effort. So, Minister Saleh, the floor is yours.

Thank you very much. And maybe I should also become a partner in crime. Because this is a good crime. Your excellencies, distinguished participants, especially our friends who are living with sickle cell disease, ladies and gentlemen, on behalf of the government and people of the Federal Republic of Nigeria, I warmly welcome you to the official launch of One SCD, which Nigeria is honored to host. and to co-organize alongside the governments of Uganda, India, Jamaica, Save the Children, UNICEF, WHO, Africa CDC, St. Jude's Children's Research Hospital, and the World Coalition on SCD. I am personally excited of the consistent progress we are making as we gather with a clear purpose to close an unacceptable gap in survival, dignity, and access to care by people living with sickle cell disease, which, as we can see, affects almost 8 million people worldwide, with over 75% of them living in sub-Saharan Africa, and many dying before their fifth birthday from preventable complications. My country, Nigeria, carries the highest burden of the disease globally, with approximately and 80,000 Nigerian babies born with the condition every year. It is therefore a national priority for us, embedded in our national child survival, maternal health, primary health care, non-communicable disease, and universal health coverage agendas. Nigeria is strengthening her response with a national program anchored within the Federal Ministry of Health and Social Welfare, a National Sickle Cell Disease Steering Committee, and a national guidance for control and clinical management. With our partners, we are advancing an integrated care pathway, screening newborns and children under five, confirming diagnosis, linking diagnosed children to treatment, including hydroxyurea where clinically indicated, and retaining them in care. Pilot programs in Lagos, Kano, and the Federal Capital Territory is testing scalable newborn screening approaches through maternity, immunization, pediatric, and primary care services. Under the leadership of the president of my country, President Bola Ahmed Tinubu, we have established an acute centers of excellence featuring high-performance liquid chromatography machines for specialized diagnosis. We are improving access to affordable diagnostic and medicine, strengthening supply chain, training health workers, establishing referral networks, and integrating sickle cell indicators into national health information systems. We are also pursuing sustainable financing through health insurance, domestic resourcing, and responsible public-private partnerships so families do not bear the cost alone. With the vast majority of global SCD burden concentrated in low- and middle-income countries of Africa, India, and the Middle East, The global response still suffers from several inequities, structural bottlenecks, fragmentation, and historical lack of privatization. This is why One SCD matters, to provide a global mechanism that connects political leadership, technical expertise, lived experiences, and financing behind country-led action. As a champion country, Nigeria commits to amplify One SCD in four practical ways. First, we will continue to integrate early diagnosis and compressive care across primary, secondary, and tertiary levels. Second, we will strengthen national accountability through better data, measurable targets, and sustainable financing. Third, we will ensure that people living with sickle cell disease and their families remain at the center of policy, program, design, and evaluation. And finally, we commit to share implementation lessons and advocate for sickle cell disease across global child health, non-communicable disease, maternal health, and universal health coverage agenda. I call on multilateral institutions, development partners, philanthropists, researchers, and the private sector to align efforts, invest in country-owned systems, and help to move proven interventions from pilot to national scale. The launch of One SCD is moving SCD from a neglected disease to the front burner. It must be more than a ceremonial moment as we double up to move from talk attention to on-ground implementation attention. Let this launch be for coordinated action, mutual accountability, and measurable progress so that a child's place of birth no longer determines whether that child survives or thrives with sickle cell disease. Nigeria is ready to contribute, to learn, and to partner. Once again, I welcome all of you to this launch and affirm Nigeria's full commitment to the One SCD partnership. Thank you for your kind attention.

Thank you, Minister Talako, and for Nigeria's leadership and for welcoming us today. We now turn to a voice that reminds us why this work matters. It is my privilege to introduce Leah Kilenga, founder and executive director of the Africa Sickle Cell Organization and a global advocate whose leadership is grounded in her own lived experience with sickle cell disease. Leah, thank you for being with us, and the floor is yours.

Thank you. And I'm happy also to be a partner in crime and following the great example from Nigeria. But once again, I'm Leah, and I'm a person living with sickle cell. And this will give you a picture of what we are dealing with as people living with sickle cell. So my mother confessed to me that her biggest regret was losing my sister at the age of four. due to sickle cell related complications. This amazing woman, other than being a mother of three girls with sickle cell, she was a nurse. So of course, she was a great caregiver. However, her biggest regret was that despite being a healthcare professional, she was too afraid to tell her colleagues that she had children with sickle cell. And because of the silence and stigma, she blamed herself for missing the last moments with my sister at the hospital. That is where my story with sickle cell begins and where many of the half a million children born with sickle cell disease each year's story begins. Lived experience is not a single individual's experience. It is the experience of families and communities, a window into what happens when health systems fail people, thereby determining how they live, grow, and who they become. Our story began with confusion, misinformation, shame, and loss. Confusion because even when families have the desire and means to seek care, diagnosis is still hard to come by. Misinformation because we are made to believe that dying young is simply how it's supposed to be, so we shouldn't hope for more. And shame because responsibility is often placed on us, our families, our parents, and rather on the systems that have failed to recognize and care for a child. Many of us have normalized sickle cell pain, missing school, frequent hospitalization, and living lives that are discretely organized around sickle cell that we forget and toss aside our hopes and dreams of living full lives. My life today looks very different from what I was taught to expect, a life where I could almost forget that I have sickle cell. But I can't believe it took me this long to get here. And this transformation is incredibly important to me because it shows what becomes possible when a person has access to care, knowledge, support, and opportunities they need to live well. I saw this in many of my friends in the US with sickle cell, in the UK, in Europe, some parts of India, as well as some countries in sub-Saharan Africa. And I simply couldn't wrap my head around how they looked so normal. The difference isn't about the countries they lived in, as you can hear, some of them are from the global south. The difference is in the systems that have been made available to them all through their lives. And this to me is the point, and this is why we're here today. I want you all to picture what is possible. A global partnership to advance equity and transform sexual care, in many big words, is to say, How might we allow children and adults with sickle cell everywhere have an opportunity to live lives undefined by our perceived limitations in responding to sickle cell disease? Sickle cell disease does not define the limits of a person's life. Systems and people do. On people, we have political commitments in many of our countries, and thank you, Nigeria. But we need more intentional action in policy and stronger push on prioritization in health financing for sickle cell in these countries. And on systems, we should consider how much more investments and strengthening do our current systems need to improve on what they are doing, but with sickle cell disease integrated across all levels and through the patient continuum of care. Families and patients need not carry the economic, the time, and the well-being cost of sickle cell. And civil society organizations in Africa and across the world, often led by people who themselves live in these realities and these conditions, shouldn't operate with limited resources and capacity, filling gaps that we know should ultimately be addressed through sustainable systems. More than 125 years later, sickle cell has come with growing recognition of sickle cell as a global health priority. The increase in scientific knowledge, new therapies, stronger advocacy, and growing political commitment, as seen in this room. This is really good, by the way. Thank you very much. But is this enough? Yes and no. Yes, because we are checking all the right boxes. And no, because we are not doing the simple things deliberately enough at scale to work well enough for people wherever they live. When I look at this room, I am overjoyed because I started my journey 13 years ago in similar rooms of NCDs, hoping that some of those people will cross over to sickle cell and actually do something about it. So I am overjoyed that we have brought together the smartest people to work on what I believe is the simplest problem in healthcare. Simple because we already know what to do, and many countries and organizations are doing it despite their circumstances. And simple because we have a wealth of lived experience, who though may not be here in numbers, they are active in communities and providing contextual leadership, and proximity to the problem to ensure ownership and sustainability globally through advocacy and implementation. That is a big, big asset. So as I close, yesterday I was privileged to go to Broadway, my very first Broadway show. Thank you, New Yorkers. I watched The show called The Outsiders, and it was fantastic. How they can do that, wow. So the story is about belonging and fighting to be seen and acknowledged. And one of the characters, Ponyboy, reflected on the poem titled Nothing Gold Can Stay by Robert Frost. And in this case, gold meant childhood and innocence. And depicting that usually fades very fast. And his friend, Johnny, before dying, encouraged Ponyboy to stay gold. So as we launch this partnership, we know launching is the easiest part of the process. But I want to encourage you to stay gold. Even in the challenges and the tussles I know you will face in the realization of this partnership and its implementation. Don't lose the innocence of why we are doing this and what brought all of you to this table today. For we are all counting on you and all the people in Africa. I'm getting calls. They're telling me, Leah, come back with the money and the solutions. So I am looking to you. Stay gold and remember why we are here. Thank you.

So, Leah, thank you for being you, and thank you for sharing your experience and for your reflections, and thank you for your leadership. Your voice reminds us that people living with sickle cell disease, their families and communities, must remain at the center of this work. And with this, I pass it on over to Carlos.

Thanks so much. So thanks so much, Lee, again, for your inspiring words to remain gold and keep dreaming, and that's basically what you said. So now we turn to a discussion about what would it take to close the persistent gaps in survival, in access, and the quality of care for people affected by sickle cell disease. So our panel brings together perspectives across regions, the civil society, philanthropy, and importantly, again, people with lived experience. Given our time, we will introduce each panelist, Helga and I, as we move through the discussion. And so, Dr. Jarbas Barbosa is the director of the Pan American Health Organization and WHO regional director for the Americas. So, Dr. Barbosa, from the perspective of the Americas, what are the main unmet needs affecting people living with sickle cell disease, and what priority actions can help countries scale sustainable sickle cell disease care? And how can one SCD support regional and national efforts?

Thank you. Good afternoon. I want to congratulate you and all the partners that are putting us together here to face a very important public health problem, but that is unfortunately not yet recognized as a public health problem that we need to address in several regions, including Latin America and the Caribbean. You know that outside the sub-Saharan Africa, the Latin American Caribbean was the only region in the world that in the last 20 years, FCD increased by nearly 6%. So I think that we really need to work together with several countries in the Caribbean, in Latin America, in order to base it on the good initiative that you already have in several countries in the region to build a strong regional program. About your question, the key unmet needs include timely diagnostics. This is, I think, that until now a very important challenge. Comprehensive and continuous care across the life course. Equitable access to effective treatment. Significant gaps remain in fragmented surveillance systems. So in some countries, we don't have good data to tell us what is happening with FCD. Uneven newborn screening coverage. We have in remote areas, in the poverty areas in Latin America and the Caribbean, sometimes we still don't have a screening available. Limited access to specialized services, poor continuity of care between pediatric and adult services. That is very important to guarantee that during the life course, people with FCD will receive the care that they need. And the insufficient access to the treatment. I think that these are the most important unmet needs that we have. But at the same time, it's important to recognize that in several countries in the region, significant progress has been made, improvements in newborn screening, early diagnosis and comprehensive care. have substantially improved the survival. Brazil, Costa Rica, Jamaica, that our minister Tufte is here is one good example how our country is responding very well to the challenge of FCD. Panama and several Caribbean territories. We have some countries like Colombia, Dominican Republic, and Ecuador have adopted the national legal mandates that are advancing toward implementation. And in several other countries in the region, they are starting to strengthen their capacity to provide this front screening to a life course check. So the Pan American Health Organization partnered with the UNICEF and St. Jude's. to better characterize the regional burden of FCD and identify priorities for action. We established together a regional technical expert group that is working and bringing together representatives from 23 counties and territories, international experts and centers of excellence. So, based on the national good experience that we have already in the region, based on the recommendation that this group will bring, I do believe that we can strengthen the regional response in Latin America and the Caribbean and provide a good support for this very important initiative that is being launched today. Thank you.

Thank you so much, Dr. Barbosa. We'll now hear from the Ministry of Health of Brazil, who unfortunately could not join us in person, sharing a country perspective on progress in sickle cell care and the priorities ahead. And I believe we have a video.

My name is Luciana Carlos. I'm the coordinator of blood banks in Brazil, sickle cell.

Is prevalent in our population.

In function of this, Brazil, since 2001, implemented a national strategy for early diagnosis, for implementation.

Through the universal newborn screening, all children born alive in our country undergo this test within seven days of life. Since 2005, Brazil has had a national policy for the treatment and care of people with sickle cell disease that ensures dignity and access to all eligible treatment strategies for this disease. Brazil is delighted to share its experience with any country or any region of the world and strongly supports the Global Initiative for Sickle Cell Disease.

Forgotten to tell you something important, and now I have just realized this, because I needed to use the translation. For those of you that want to have Portuguese, go to China. That's the option, you will find Portuguese, so please. So now we will then thank you for the Minister of Health in Brazil. And we are now going to be joined by Courtney Davis from the United States as a person with lived experiences of sickle cell disease, bringing the perspective of people and communities directly affected by the condition. Courtney, from your personal experience, what needs to change most urgently to improve access to care, dignity and quality of life? And how should people living with sickle cell disease, households and communities help shape the One SCD partnership?

Distinguished leaders, partners, government of the Federal Republic of Nigeria, when I think about what needs to change most urgently, I think first about what we actually mean when we use the word access. I was born in Memphis, Tennessee, and diagnosed with sickle cell disease before I was born. I was extraordinarily fortunate to grow up receiving care at St. Jude Children's Research Hospital. I had access to specialists who understood my disease, to treatments that changed the trajectory of my life, and just as importantly, to a care environment that taught me from a very young age to understand my disease and advocate for myself. That experience has given me an enormous amount of gratitude, but it has also made me acutely aware that my experience is not the experience of everyone living with sickle cell disease. Even here in the United States, where approximately 100,000 people live with sickle cell disease, life expectancy for people with SCD remains more than 20 years shorter than expected. And around the world, as we have heard today, the disparities are even more profound. So when we talk about access, I think we have to define it much more broadly than whether a medicine, a hospital, or even a cure exists somewhere. Access means being diagnosed early, It means having a knowledgeable provider close enough to actually see. It means being able to afford and consistently receive treatment. And it means knowing that when you arrive at an emergency department in excruciating pain, you will be believed, treated with urgency, and afforded the same dignity as any other patient. Sickle cell is a disease in which pain is often invisible. And when the person experiencing that pain has to spend time convincing someone that it is real, that is not simply a poor patient experience. It is a failure of access. I also think that quality of life requires us to recognize everything that happens between hospital visits. Sickle cell does not exist only during a pain crisis. People living with the disease are trying to go to school, build careers, raise families, care for children, and plan futures while managing a chronic and unpredictable illness. Good care should therefore be measured not only by whether we survive, but by whether we are given the opportunity to live full lives. And that brings me to the second part of the question. How should people living with sickle cell, our households, and our communities shape One SCD. We cannot simply be the beneficiaries of this partnership. We have to be among its architects. People living with sickle cell know where systems fail because we encounter those failures in real time. Families know what continuity of care actually requires because they are often the ones coordinating it. And communities understand the cultural, financial, and practical barriers that determine whether an intervention that looks successful on paper actually reaches the people it was designed to serve. So lived experience should not enter the process at the end after priorities have already been established. Instead, patients and families should help determine those priorities, define what successful implementation looks like, and hold institutions accountable for whether commitments translate into meaningful change. One, SCD has an extraordinary opportunity to bring governments, health systems, researchers, funders, clinicians, communities, and people living with sickle cell around the same table. But equity is not achieved simply by bringing everyone into the room. It is achieved by ensuring that the people who live with the consequences of these decisions have a meaningful role in making them. I have had the extraordinary privilege of seeing what is possible when a child with sickle cell receives early diagnosis, excellent treatment, education, and a community that believes deeply in her future. I am standing here at the United Nations because people and institutions invested in mine. The goal of One SCD should be to make that kind of future not a matter of geography, circumstance, or good fortune, but an expectation for every person born with sickle cell disease. Thank you.

Thank you very much, Courtney, for sharing your experience so openly and for reminding us why the work that we do and this work that we're trying to put together matters so much. So Professor Isaac Odamo represents the World Coalition on Sickle Cell Disease and is an internationally recognized pediatric hematologist and expert in sickle cell disease. So, Dr. Adami, could you tell us more about the World Coalition on Sickle Cell Disease and how it has been helping to strengthen political recognition of sickle cell disease and to translate that recognition into the funding, the policies, and the commitments that are so needed to improve the care for people with sickle cell disease globally?

Thank you very much. The World Coalition on Sickle Cell Disease is the only global platform that brings together the full range of non-state actors in sickle cell disease. This includes patient organizations, clinicians, researchers, implementers, civil society, and the private sector. This broad cross-sector convening role is what defines our niche, and it's where we add real value. What we are not is that we do not replicate programmatic mandates. Rather, we have a distinct role to bring voices together and translate them into political engagement at a global level. Before the formation of the World Coalition, the sickle cell disease community lacked this dedicated platform to do this kind of work. And the fragmentation limited and blurred our collective visibility. But that is beginning to change. For example, through sustained advocacy and political engagement, we have to secure the inclusion of sickle cell disease in last year's UN political declaration on non-communicable diseases and the promotion of mental health and well-being. That recognition now positions sickle cell disease alongside the other main chronic disorders and more firmly embeds sickle cell disease in global discussions around primary health care, sustainable health development, sustainable financing, and health system strengthening. So what do we bring to the One Sickle Cell Disease Initiative? First of all, the coalition is a co-promoter of One Sickle Cell Disease, alongside the partners that are represented here today. Right from the outset, we supported One Sickle Cell Disease as a coordination mechanism connecting existing efforts without replacing or absorbing the various organizations that make up the sickle cell disease ecosystem. Our role in this effort is really to function as a non-state actor convening platform, bringing global advocacy capacity to a field that has historically lacked a dedicated vehicle for this. Our contribution, therefore, is to channel this united aggregated voice into one SCD and sustain the global advocacy engagement that is needed both to mobilize resources and to anchor country-level implementation of evidence-based interventions that will improve sickle cell disease worldwide. Thank you very much.

So, thank you, Dr. Odoma, Odoma. I'm now pleased to introduce Denise Bengoed, General Manager of the Novo Nordisk Hemophilia and Hemoglobinopathies Foundation, which works to expand access to diagnosis and care for people affected by sickle cell disease, hemophilia, and other hemoglobinopathies. Over to you.

Thank you very much. Good afternoon to everyone here in the room. First of all, a big thank you to all of you who have come together today around one sickle cell disease for inviting the Nonsynonymous Hemophilia and Hemoglobinopathies Foundation to be part of this important launch, important milestone. First of all, we at the foundation warmly welcome one sickle cell disease. The main reason being because of how it is rooted. One sickle cell disease brings the global alignment together. It is an important opportunity to connect political commitment, technical expertise, lived experiences, and resources behind country-led action. At the foundation, we look forward to continuing to support the in-country implementation and working alongside partners to translate the shared commitments into action. And now being guided by a global alignment. We were as a foundation, the No One Notices Hemophilia and Hemoglobinopathies Foundation, was founded more than 20 years ago on a simple but very important belief, which is actually what some of you have already mentioned before, so I'm happy we are aligned around this vision, that where a person is born or where a person lives should not determine whether they can access care, they can access diagnosis, they can access treatment. So we have a very grassroots approach, and it starts with our in-country partners. We call them local partners. Together with our partners, we co-assess the needs, we co-design, and we co-create and co-implement solutions with the people who are affected by the conditions, hemophilia and hemoglobinopathies, which includes sickle cell disease and thalassemia. with the healthcare professionals and with the public authorities. We work along the local partners to support the implementation, and I think it's important to mention that we don't have a given framework. It is really based on what the needs are in the countries. what the partners, the governments, share with us what they need, and this is what we then follow and support. We believe that it is important that the countries that have high prevalence of sickle cell disease, or are having a high burden of sickle cell disease, must have a meaningful place at the global decision table. That's another reason why we warmly welcome the One Sickle Cell Disease, as we have the country representatives here from across Africa, Latin America, and India. Global priorities should not be defined through a top-down approach. They must be shaped through a bottom-up and especially participatory process that really reflects the realities and priorities of a country. We've heard the two different experiences from Kenya and the US. There cannot be one solution if the context is so radically different. And also, we want to see the domestic financing coming in. But if we don't have a participatory approach, How will the governments know what they are able to finance? So it has to be sustainable. It has to be defined based on the local resources available. So that's what we call the bottom-up participatory approach. The third point is that following actually this example of the global partnership of one sickle cell disease, I believe we should foster stronger unification of stakeholders within the countries. We say this because, well, we come from a history of focusing on hemophilia, and the World Federation of Hemophilia has been the anchor point for this community. And also at country level, it's rarely the case that we see more than one patient organization. Now, when we turn it to Sickle cell disease, it's a very different story. So this could bring together a national sickle cell disease alliance that I know exists already in several countries, representing the people with lived experiences and their organizations, the very grassroots organizations. Also, a multidisciplinary medical advisory committee with representatives not only from the capital city or the largest cities of the country, but freely from across the country. And of course, the implementation should happen under the strategic oversight of the health authorities. And this is where philanthropy can contribute. Our role goes beyond the simple grant making. We can provide catalytic support to strengthen capacity and infrastructure, awareness, advocacy, in general, really strengthening the systems and aligning, of course, with the country priorities and everything that is already in existence. This is what we at the foundation call the owner shift. We have invented a little bit this word. What does it mean? It's a central part of our work, and that is the local ownership shift. As I mentioned before, we do not come with a framework. We listen to what the needs are, where the gaps are, and this is what we then support. So we support the local ownership by strengthening the people, the institutions, and the systems that can continue the work long after a project or funding ends. So that's the systemic change and the journey to reaching what success looks like for us, self-sufficiency, that these countries do not depend anymore on funding, for example, from a foundation like ours. And on the hemophilia side, that is what several countries have reached already. Now, this is what we should aim for also for sickle cell disease. So to close, as mentioned, where a person lives should not determine whether they can access care. Therefore, we warmly welcome and support One Sickle Cell Disease and look forward to working with all of you here in the room to make it happen. Thank you very much.

Thank you, Denise, and thank you to all our panelists. So what we have heard is that the solutions must be both practical and sustained, grounded in country priorities and owned by the countries and shaped by the people and the communities that are mostly affected. So thank you for bringing all these perspectives to this discussion. So I'll pass it on now to Helga.

Before we turn to our high-level segment, we would like to share a short video introducing the vision and ambition of One SCD.

Sickle cell disease affects nearly 8 million people worldwide. Yet where a child is born can still determine their access to diagnosis and care. Leaders across healthcare, government, UN agencies, and civil society are joining forces to change that. Coming together as One SCD, a global partnership to advance equity and transform sickle cell care for children and their families around the world. By connecting existing efforts, strengthening in-country networks, and accelerating action at scale, One SCD is bringing partners together around a shared goal, a future where every child with sickle cell disease has the opportunity to live and thrive. Together, we can transform sickle cell care worldwide.

So now we turn to our high-level segment, where we will hear from co-host governments and global health leaders about the action needed to accelerate progress on sickle cell disease. We'll hear briefly from each of our speakers. So it is now my pleasure to invite the Honorable Geoffrey Hanley, Deputy Prime Minister of Saint Kitts and Nevis, Deputy Prime Minister Hanley, the floor is yours.

Thank you very much. Excellencies, representatives of the World Health Organization, UNICEF, Africa, CDC, and the St. Jude Children's Research Hospital, federal leaders, medical professionals, advocates, and friends. I bring you warm greetings from the government and people of Saint Kitts and Nevis. And particularly from our Prime Minister and Minister of Health. Honourable Doctor Terrence Jew. On whose behalf I am honoured to join you today. Saint Kitts and Nevis is pleased to co-host this important gathering. And commend the partners whose vision and determination have brought one SCD to life. For millions of families, sickle cell disease is more than a diagnosis. It is the uncertainty of a child's next painful crisis and the lifelong burden of seeking treatment that is too often inaccessible or unaffordable. Colleagues, no child's opportunity to live a full and healthy life should be determined by the circumstances of their birth or the country they call home. Yet, across our world, advances in medical science have outpaced access to the care that science makes possible. We have the knowledge to detect sickle cell disease early, prevent many complications, and improve both survival and quality of life. What remains is the collective responsibility to ensure that these advances reaches those who need the most. That is why one SCD is so important. It recognizes that this challenge cannot be overcome through isolated interventions but through sustained international cooperation, shared expertise, investment in health systems, and a commitment to equity. For Saint Kitts and Nevis, this mission is particularly meaningful. As a medical doctor by profession, our Prime Minister has long recognized the importance of expanding access to specialized sickle cell care. Even before assuming office, he engaged medical specialists in Germany exploring opportunities for cooperation in advanced treatment, professional training, and specialist medicine. Most recently, through arrangement facilitated under his leadership, a German Sika Cell specialist visited Saint Kitts and Nevis. Conducted a clinical assessment program and gathered valuable patient information. That engagement reinforce both the possibilities of international partnership and the importance of sustained follow-through. Our commitment also extends beyond our national borders. While chairing the Organization of Eastern Caribbean States Authority, OECS, in February 2024, Prime Minister Drew advocated for the establishment of regional centers of excellence, including the dedicated Sika Cell medical facility, recognizing that our small island states can accomplish far more when we pool our expertise and resources. We also recognize the importance of regional initiatives to expand newborn screening and early intervention, including the work undertaken through the OECS and its partners in Grenada and Antigua and Barbuda. Such cooperation demonstrates what becomes possible when regional health systems work together. At home, our Ministry of Health has taken measures to strengthen the availability of blood products through improvements in our national blood bank. Expanded donation arrangements and reactivation of the national blood donor registry. Our children's medical fund, an initiative founded and personally supervised by the Prime Minister, Drew, also provide financial assistance to eligible families whose children require specialized treatment overseas. In Saint Kitts and Nevis, we have pursued improved access to essential medications. While recognizing that more while recognizing that more must be done to strengthen specialist services and continuity of care. Looking ahead, Our government's vision for our new national hospital includes centers of excellence in urology, oncology, and cardiology. With sickle cell disease and research also identified as an important area for specialized development. We recognize that these ambitions require sustained investment, trained professionals, research partnerships, and meaningful collaboration. And this is precisely where one SCD offers an extraordinary opportunity. So this partnership let us move from fragmented efforts to coordinated actions. And from an equal access to a future in which quality sickers health care is available to every child and adult who needs it. Saint Kitts and Nevis welcomes this partnership and looks forward to contributing to its mission. Thank you.

So, thank you, honorable Deputy Prime Minister Hanley. Uh, that is, was very comprehensive and very good news, so that we look forward to that. Now, I have, I am so pleased to invite the honorable Punia Salil Sirvastava, Secretary of Ministry of Health and Family Welfare, Government of India. So, Secretary Poonia, the floor is yours.

Thank you. So, Minister Salako, Excellencies, distinguished delegates, and all our partners. India welcomes the launch of One SCD as a global partnership to advance equity and strengthen the global response to sickle cell disease, particularly in countries and communities with a high disease burden. SCD is not merely a genetic disorder, but an important public health and health equity issue, particularly affecting vulnerable and underserved populations. The response therefore needs to include awareness, screening, early diagnosis, prevention, timely treatment, comprehensive care and attention, and as brought out by some of our partners, tackling social barriers. Recognizing the need for a comprehensive response to sickle cell disease, Under the leadership of our honorable Prime Minister, Shri Narendra Modi, the government of India launched the National Sickle Cell Anemia Elimination Mission in July 2023 with the goal for elimination of the disease by 2047. Under this mission, more than 72.9 million individuals have been screened till date. with over 2 million individuals identified as carriers and 250,000 individuals diagnosed with SCD. More than 49.3 million sickle cell cards have been distributed, and over 165,000 patients are receiving hydroxyurea therapy through public health facilities. India's experience under the mission highlights the importance of strengthening the health system in a comprehensive manner. We have integrated screening, diagnosis, counseling, treatment, and follow-up within the existing public health services through our network of health and wellness centers, community health centers, and appropriate referral linkages. 15 healthcare institutions have been selected as centers of excellence for specialized care, including prenatal diagnosis and management of severe SCD complications. We have covered bone marrow transplant under our health assurance scheme, where each vulnerable family is provided a health cover of around $5,000 annually for inpatient treatment. Capacity building of our health personnel has facilitated the fact that community level health workers play an important role in mobilizing communities, facilitating screening, supporting counseling, and ensuring linkage to care. We have developed the Sickle Cell Anemia Elimination Mission digital platform, which supports registration, recording, and tracking of screening, diagnosis, and other requirements for hemoglobinopathies. I would like to inform that the Indian Council of Medical Research has over 30 approved point-of-care diagnostic kits, which has reduced the cost dramatically to less than half a dollar per kit, making diagnostics highly cost-effective. Further, government-funded research is underway to develop an indigenous, potentially curative gene editing therapy for high-quality and affordable treatment. Dear partners, there is considerable scope for all of us to learn from each other on screening strategies, models of care, community engagement, digital tools, genetic counseling, and integration of services into primary health care. Many ideas that were expressed today have shown that. India believes that One SCD can help build greater convergence amongst ongoing efforts and contribute towards a more coordinated, equitable, and sustainable global response to sickle cell disease. And we look forward to working with all the stakeholders here. Collective focus will, I am sure, ensure that no individual with SCD is left without access to timely diagnosis, appropriate treatment, counseling, and continued care just because of where they live or their socioeconomic circumstances. Thank you.

Thank you so much, Secretary Srivastava, for your inspiring words and all the commitment shown by the government of India. So unfortunately, the Minister of Health of the Republic of Angola could not be present today, but she has sent her regrets and her commitment to the initiative as well. So we invite now the honorable Christopher Tufton, the Minister of Health and Wellness of the government of Jamaica. Minister Tufton, the floor is yours.

Thank you very much, Mr. Chairman. Distinguished ladies and gentlemen, Jamaica has lived this fight against sickle cell disease for over 70 years. And I am happy to say we have some results that we would like to share and hopefully As we learn from you, you could learn from us. Since 1973, our sickle cell unit at the University of the West Indies has built one of the world's most comprehensive sickle cell programs. Today, virtually every baby born in Jamaica, or 99.9% in our most recent biannual review, 2023-25, is screened for sickle cell disease at birth. paid for by the government of Jamaica in both our public and private facilities. One in 150 Jamaicans is born with sickle cell disease. Screening is only the beginning, however. Children who test positive receive free penicillin injections, pneumococcal and hemophilus influenza vaccination. and our frontline health workers follow a national care guidance chart designed to prevent early childhood complications. In fact, the under-five mortality of patients linked to care was like that of children without sickle cell disease. Hydro, sorry for the pronunciation, hydroxyurea is available free in public facilities and subsidized in private pharmacies. Research is being undertaken to improve uptake. Our Sickle Cell Technical Working Group coordinates this work, uniting the Ministry of Health and Wellness with our Sickle Cell Unit, the Sickle Cell Support Foundation of Jamaica, which is a leading patient advocacy group, and all four of our regional health authorities under one national program. Jamaica's contribution extend beyond our shores. Professor Monica Asnani. of our sickle cell unit server on the WHO guideline development group that produced this year's WHO recommendations on managing sickle cell disease during pregnancy, childbirth, and inter-pregnancy period, with Jamaica expertise helping shape global standards of care. We share this experience not to claim that the work is done. Midwifery shortages, care continuity, and sustainable financing remain real challenges for us. as they do for every country in this room, I would imagine. But because a small island developing state can show that sustained and national commitment achieves, and because One Sickle Cell Disease promise of coordinated global action is exactly what will help us close our remaining gaps. Jamaica therefore reaffirms its full commitment to One Sickle Cell Disease as a founding, co-host government, and we look forward to working with all partners here today to turn this partnership ambition into the same measurable results that we have been pursuing over 70 years at home. Thank you very much.

Thank you, honorable Minister, for all your fine efforts and also commitments and lessons learned that are going to be very useful, not only for Jamaica, but beyond its borders to other countries. So now I have come to the one and the only World Health Organization, and I am so pleased to invite Dr. Bruce Aylward back with his title, Assistant Director General for Health Promotion, Disease and Prevention and Care, to give the remarks of WHO on behalf of Dr. Tedros. the DG of WHO. So, Bruce, the floor is yours.

Thank you very much, Helga. Excellencies, colleagues, distinguished guests as well among us. As you can see, and as Helga said, I'm not actually Dr. Tedros, but I am delighted to be here on his behalf today to welcome you all to the event and thank you all for joining us to be part of One SCD. I'm also delighted to be here because I get to take Dr. Chedros' pin, and hopefully all of you have also got one of these pins now, which we can wear proudly through the rest of this UNGA event and beyond, because this pin stands for a lot. It stands for what today stands for, and that is equity, and what brought us all, I think, around this table. As we've heard from so many who have spoken already, and I think, Minister, you kicked us off today with that comment, We live in a world in which 90% of the children who are born in some areas with this disease will die before their fifth birthday. Over 90% of those who come from countries like mine will live well beyond that into adulthood. We have many examples of inequity in our world, but this has got to be one of the most stark and staggering examples of the inequities that are a result, like you said there, of systems that are failing people and some of the most vulnerable, and systems that we, as a partnership now, are committed to do something about. Because the tragedy, of course, is that this is preventable, as we've heard from so many of you who've spoken already today. We know what works, we can diagnose sickle cell very, very early, we heard about the screening programs, every child from birth in some areas, we can prevent many of the complications, we can deal with and provide, of course, life-saving medications and also comprehensive care. So the challenge, and I think, Dr. Isaac, you mentioned that it is no longer scientific. The challenge is one of implementation. So the challenge now is ensuring that, as we've heard again and again, every child, irrespective of where they are born, can benefit from the extraordinary knowledge and the tools that exist. And this should not be a challenge. And this, of course, is what One SCD is all about. Now, from the WHO side, We expect One NCD, while a global partnership, to be country focused and very much country community focused to ensure that we are aligning our partners and expanding our partners, Dr. Isaac, beyond the coalition to so many others, to national priorities, to that can accelerate implementation, promote accountability, obviously, we all need to be accountable to this, and mobilize the action that we need to close what is, again, one of the most egregious, let's say, equity gaps that we face. This partnership has got to connect all of the efforts that we're hearing about today and strengthen those efforts. And our success, of course, can't be measured as much as we might like in meetings like this one, but it has to be measured by the number of children that can actually get diagnosed very, very early, the number of families that can access care, we haven't talked enough about the families, and the number of people, most importantly, that not only survive, but thrive despite this disease. At WHO, our role and our contribution is very, very clear. We will continue and do more to provide the global norms, the standards, the technical and evidence-based guidance that has to underpin this entire effort, of course. We will continue to support countries as they work now to integrate SCD care into the primary healthcare programs people and ministers have talked about today, the universal healthcare coverage, and the integrated programs that we already have on child care. So we will work to do all of that. And we will work, I think, as importantly, to help ensure that we've got the targets, the indicators, the processes to be able to hold all of us collectively accountable to the children that we've been talking about here today. But no partnership is going to be successful unless countries are firmly and clearly in the driver's seat. And again, I just want to thank you, Minister, for your opening comments today and all of the ministers present for so many of the comments, because I think what we heard is they are very much in the driver's seat, and we've heard about the progress can be made when they are. We've also heard, of course, that from communities and as part of this, communities have to be heard again, just to thank you for your inputs today. And we, the partners, we will all align behind the national plans, the national priorities, and we will be accountable for progress. But accountable, not just in these rooms, accountable, of course, to the people like yourself, Leah and Courtney, and thank you so much for your stories that brought this alive for us all today. We'll be accountable to you for the progress. And we have to ensure that those voices, your voices, remain at the center of this effort, because you really give us direction, you tell us what works. You tell us one doesn't work and where the systems fail. And frankly, we can't see that from where we sit, unfortunately, all the time, but we will listen. Today's launch comes at a very important moment because on the one hand, we have fantastic knowledge now, we have fantastic tools to move forward on SCDs, but we have unprecedented challenges. We're meeting here at the UN, the multilateral system is under pressure, we've financing is declining. So at the same we have got the power of partnership that brings us together and makes the launch today so important. So as we move forward, we want to move beyond fragmented efforts and towards obviously a shared agenda for implementation. We'll work together to ensure early diagnosis, to ensure access to medicines, ensure access to comprehensive care, and to strengthen those health systems that we heard were failing you most importantly. Because I think as you said, Secretary, and in your comments, right? We have to ensure as we go forward that no child, you know, wherever you're born, this cannot determine whether or not you get access to these services that not only do you survive, but you actually thrive. We are extremely proud at WHO to join this movement, to join the governments, the communities, the partners, St. Jude's, I want to do a special shout out to you, to you under your leadership, Jim. And we welcome the launch of One SCD, proud to be a part of that. But Leah, as you said, right, this is the easiest part. And what we have to do now is ensure that together we move forward to turn the shared vision we've heard from everybody around this table today into measurable results for the children, for their families, and for the communities around the world that are living with this disease. Thank you.

Yeah, thank you so much, Bruce. Always a pleasure to listen to you. And now, we're going to invite Professor Aliko Baba, who is the Senior Advisor and Special Regional Representative of the Director General for West Africa, but he is not able to join us. So, regretfully, we will then, but we will be very diligent in taking their commitment and adding it to today's string of commitments here. So it is now my absolute great pleasure to invite Dr. James Downing, President and Chief Executive Officer of St. Jude Children's Research Hospital. Dr. Downing, the floor is yours.

Thank you, Helga, and good afternoon to everyone that's here. I am so honored and excited to be here on this historic day. This announcement of One Sickle Cell Disease, this global partnership to advance equity and to really transform sickle cell care. It was 12 years ago that I took over as the CEO of St. Jude Children's Research Hospital. And at that time, as an institution, we decided that we were going to commit ourselves to a global agenda. We were going to transform what we did and start to look at the catastrophic diseases of childhood that occurred across the world and the inequity that occurs by where a child is born. It was eight years ago we announced the Global Initiative for Childhood Cancer. And in the ensuing seven years, we have made unbelievable progress in tackling childhood cancer. think today we have over 400 institutions across 100 countries that are part of that effort. And that was a formal partnership with the World Health Organization. So today we sit here announcing this new initiative, this partnership with WHO, with UNICEF, with the Federal Republic of Nigeria, with the government of Uganda, with the Global Coalition for Sickle Cell Disease, and many others that we've heard from today to really transform care for children with sickle cell disease. I think we have within our hands the ability to do that. You've heard the statistics, 500,000 children are born every year with this disease, and over 80% of those children will die. You've heard what access to care can bring through Leah and through Courtney and her talk about what care can bring to an individual with that disease, how it can transform their life. And so we have within our hands the ability to do that for every child in the world that is diagnosed with sickle cell disease. And so it's going to be the commitments that you've heard, early diagnosis. providing access to care, providing antibiotics, providing vaccination, figuring out how to use hydroxyurea, when to use it, and for what patients to use it. And doing that and supporting the families and educating the patients, we can change the outlook for children with sickle cell disease. We can change that statistic from 80% dying by the age of five to 95% living into adulthood. And so this is what we are coming together to do. You have my commitment as the head of St. Jude Children's Research Hospital that we are committed to this, that we are going to use our resources, we're going to use the knowledge that we generate on our campus, our network of collaborators across the globe to help push forward this agenda. I think we can make tremendous progress. We have seen the countries are poised. They're doing prenatal diagnosis. They're building that capacity. But it's all of us coming together and learning from each other that will have the greatest impact. And so our hope is that one day, all of us working together, that we can accomplish Danny Thomas's dream that no child dies in the dawn of life. And I firmly believe together we can actually accomplish that. and really by the end of this decade. So we need to push hard, work collaboratively, and change the outlook for those children. Let's give them the hope they deserve. Thank you.

Thank you so much, Jim. Thank you so much, Dr. Downing, for your leadership, your support over the years, and for your commitment to this global initiative for sickle cell disease, One SCD. So it is now my honor to introduce Ms. Catherine Russell, the Executive Director of UNICEF. So Director Russell, please.

Thank you very much. excellencies, distinguished partners, colleagues, and representatives of communities affected by sickle cell disease. On behalf of UNICEF, it's a privilege to join you for the launch of the One SCD. And I was very happy to hear my dear colleague, Bruce, and I want to associate myself with everything you said. I thought I could just pack up and leave after I heard you. Thank you very much to the government of Nigeria for hosting us here today. Minister, thank you. And to the governments of India, Jamaica, Uganda, St. Kitts and Nevis for co-hosting. Very much appreciate that. Sickle cell disease is one of the clearest and most unacceptable examples of inequity in global health, and we have a lot of those, so to be the clearest says something. As we all know, in some high burden settings, up to 90% of children with sickle cell may die before the fifth birthday. You've all heard that, you know that. In well-resourced countries, 95% of children survive the first five years. It's just, we can't really tolerate that inequity. The gap is not inevitable, and it's not because we lack solutions. We know what saves lives, early diagnosis, including newborn screening, access to essential medicines and preventive care, and quality, continuous care integrated into strong primary health systems. Yet for so many children, these interventions remain out of reach. In some high burden countries, fewer than one in 10 children affected receives essential diagnosis or treatment. One SCD is, of course, about changing this. One SCD brings together governments, communities, UN, and regional health partners, and civil society around a shared agenda to make proven sickle cell interventions available through country-led systems, and to hold ourselves accountable for reaching the children still being missed. This moment comes and builds on nearly two decades of global commitment from the World Health Assembly resolution in 2006. and the UN General Assembly resolution in 2008 to more recent guidance from WHO and Africa CDC. The policy foundation is there. What One SCD can provide is the coordination needed to turn commitment into action. For UNICEF, that begins where families and children already are, in primary healthcare facilities, maternal and newborn services, schools, and communities. It means integrating sickle cell care into existing systems, strengthening health workers and supply chains, and ensuring that affected children and families help shape the services intended for them. We are already seeing what this looks like in practice. In India, UNICEF is supporting national and state governments to strengthen screening, referral, and follow-up for children with sickle cell disease in underserved communities. This includes training frontline health workers and connecting children with sickle cell disease to care and social protection. And in Malawi, UNICEF is working with the Ministry of Health and partners to bring services for children and adolescents living with severe chronic diseases, including sickle cell disease, closer to their communities. Excellency, the most important voices in this effort are those of those living with sickle cell disease themselves. Today we heard from Lee Kalinga, her voice and the voices of children, adolescents, and families affected by sickle cell disease must shape every part of this response, not as an afterthought, but as a starting point. Progress will require country leadership and ownership, sustained political commitment, strong partnerships, and investment. UNICEF is committed to bringing our mandate for children, our country presence, and our experience strengthening primary health care and community systems to this effort. We will work with governments and partners to integrate proven interventions into existing systems. We will support health workers and strengthen supply chains. And we will help translate global commitments into measurable improvements in children's survival, health, and well-being. Today, we ask partners to take action in three critical areas. First, to establish shared global targets for sickle cell disease that we can measure progress and hold ourselves accountable. Second, to translate political commitments into national action, integrated into primary health care and national health plans. And third, to mobilize sustainable financing for a response that has been underfunded for far, far too long. We have the knowledge, we have the proven interventions, and through One SCD, we have an opportunity to bring greater coordination and collective action to this effort. A child's chances of surviving sickle cell disease should never depend on where that child happens to be born. Together, we can make sure that every child living with sickle cell disease has the chance not only to survive, but to grow and learn and thrive. Thank you all very much.

Thank you very much, Director Russell, for your leadership, your support, and your words. And so, and thanks as well to all of our distinguished speakers. As you heard from Dr. Fox, that unfortunately, Dr. Jean Casais, Director General of CDC, could not join us because of a parallel high-level meeting that was competing with this event. So, but as we have heard as well, They have expressed their strong commitment to help accelerate One SCD and the care for all children with sickle cell disease in Africa. So we have heard a strong and consistent message from governments and the global health leaders alike. The ambition is here. The challenge now is to translate it into progress that can be felt in countries, in communities, and in families. Helga.

And now we have come to the very special moment that follows any kind of launch, and that is for the official photo. And so I will now have the pleasure of calling out, and please, you should then go to the front of the room. Is that there? Okay, where should they go, back there or where they going to group? Yes, yes. Okay, I'm calling and you're gathering. Yeah. Alright. Okay. So, we have now so we to mark the moment. I invite the following to please come up to the front of the room and so that is Minister Salako of Nigeria there. Uh Deputy Prime Minister Doctor Jeffrey Handley of Kits and Nevis. Yes, there, right? Yes, yes. Okay, and then Secretary Punia of India. And then we have Minister Christopher Toulton of Jamaica. And then Kathy, you and Bruce, and then Dr. Downing, you're there. And then Professor Isaac Odama, we would like you also. And then, of course, Leah Kilinga and Courtney Davis. So this is the official, yeah, we need some more women here. Courtney, go on the other side. Okay, we are totally, thank you for that. We must remove the seats, yeah.

Don't worry, you did that.

And then we must remove the last seat, yeah. Okay, the photographer has to quality assure this. Here we go. Okay. Okay, I ask everyone to remain in their places. Our next photo, I would like to bring in today's speakers along with additional leaders who have helped shape this. So please join us at the front. We want Dr. Barbosa. Are you staging? We need, okay, Dr. Barbosa, please join. We want Dr. Mikkelsen. Dr. Mickelson, yeah. Dr. Jane. Jane Hankins, yeah. And Mario Oteligo. Oh, yeah, we are a part of this too, yeah. Okay, and then.

What are we doing?

We're snuggling. Okay. Okay, you have to say smile or something, yeah.

Smile.

Yeah.

Great. Well done.

Really a pleasure.

And thanks for what you're doing.

So we are not done. We are not done. Please take your seats. Yes, please, please take your seats. Yes.

Oh, okay. They're.

Coming back.

Okay, I would like to invite everyone to take their seats. Minister, please take your seat. You will be able to take photos afterwards. Sit, sit, sit. Yeah. Where, where, where? Give them seats. Give them seats. Okay.

Oh.

Okay. Please, please take your seats after this photo.

Okay, thank you. Yeah. Minister, do not go anywhere. You are in high demand. And you must be -- okay. But do you want to sit? Do you want to sit there? Yeah, okay. Okay. Okay, ladies and gentlemen, today is an important milestone, but ultimately, the measure of this partnership will be what happens next. That means moving quickly into the work ahead, establishing focused work streams, aligning around shared priorities and bringing the distinct strengths of each core partner together in support of countries and communities. We are only better as we stand together. And in this alliance, we will be able to do more together than alone. And with that, I pass it over to my partner in harmony, Carlos.

Thank you so much. Partner in harmony, that's an evolution over crime. So, but as we have seen today, we are not just building an initiative, we are already building a movement that will not stop. And we would like to give the floor briefly to some organizations that have already come up and expressed their support to the One SCD. I will call upon the representatives from these organizations for just brief remarks. I will start with NCDI Poverty Network.

I'm Professor Harre, Medical School, and from the WHO Collaborating Center on Integration Science and Service Delivery at Mass General Brigham. And I'm also the co-chair of the 29 country NCI Poverty Network, which is dedicated to addressing the intersection of extreme poverty and non-communicable disease. Over the course of the 2015 to 2020 Lancet Commission reframing non-communicable disease for the poorest billion, we recognize sickle cell as one of the most important and most neglected issues affecting the health of the world's poorest people. Since the publication of the support, the NCDI Poverty Network has worked to implement the Commission's recommendations to expand global health and NCD agenda in the interest of equity. The primary focus of the network has been to support initiation and expansion of the package of essential non-communicable disease interventions plus, or PEN plus. You heard about Malawi and UNICEF's example. PEN plus is a strategy to decentralize and integrate services for severe chronic NCDs, particularly sickle cell disease, type one diabetes, and rheumatic and congenital heart disease. In 2022, all 47 countries of the World Health Organization's African region committed to initiating PEN+ programs by 2030. There are already more than 6,500 patients receiving, with sickle cell, receiving high quality PEN+ care across 14 countries. Seven countries in the African region have already adopted national PEN+ operational plans to scale the strategy, and more than 15 countries are expected to develop and adopt such plans over the next three years. A recent investment case presented at the Third International Conference on Pen Plus in Africa was shared and showed a benefit cost ratio 4.5 to 1, and an opportunity to get 30,000 patients with sickle cell recognized on treatment by 2030, and more than 230,000 people with sickle cell by 2035. This includes not only screening and penicillin prophylaxis. but also retention and care with hydroxyurea, blood transfusions, and joint replacement necessary, and patient education and peer support. We are eager to work as part of OneSCD to meet the demand from countries for an integrated and coordinated response to severe childhood-onset chronic diseases. Thank you.

Thanks so much. Second, I would like to call to the floor the representatives from the Clinton Health Access Initiative.

Hello, excellencies, distinguished guests, and all partners here today.

The Clinton Health Access Initiative welcomes the One SCD partnership and commits to its mission. CHI commits to increasing the affordability and availability of diagnostics and hydroxyurea treatment for children around the globe and bringing national programs to scale.

Thank you.

We also have received the support from the World Heart Federation. I believe there is a representative here as well.

I'm here. So I'm Jagat Narula. I'm the president of the World Heart Federation. We represent 120 countries and more than 240 cardiology bodies from across the world. I would like to begin by saying and correcting the filing error. We have always thought that the sickle cell disease is a blood disorder, but I would like to say that this is a filing error. Why do people die? People die of stroke. They die of pulmonary hypertension. They die of heart muscle disease, arrhythmias, sudden cardiac death. They're all cardiovascular diseases, but we have the wrong departmental address here. The most important thing that I would like to say here is that on Friday, when the heads of the states adopt the political declaration on the pandemic preparedness, and also this evening in the next room when we will be meeting for the pandemic preparedness, I will argue that the preparedness must protect continuity of care. No condition tests continuity more brutally than the sickle cell disease. And that is what we saw in 2020, that the blood transfusions, the diagnosis, the prevention of stroke, they all fell apart. So at the end, I would like to say that we, on behalf of WHF, we would like to pledge today that we would like to support as much as possible the One SCD, because we have been a flag bearer for the rheumatic heart disease. where the number of the deaths every single year are the same as the sickle cell disease. And 2026, that we have declared as the neglected cardiovascular diseases year, I would like to say that would like to include that in our agenda as the sixth most important neglected cardiovascular disease. I would like to end by saying that the sickle cell disease is a cardiovascular disease and World Heart Federation will treat it as one. The burden is 11 times what the death certificate show. SCD care is the purest test of the continuity of care, which links the launch to the Friday's preparedness, the newborn screening, the hydroxyurea, and the transcranial Doppler belong to the primary care platform next to the blood pressure cuff. Thank you.

Thank you very much, Professor. That was an excellent reminder of what kills our patients as well. So, and next I would like to open the floor for representatives from Novartis Corporation that also to remind us the involvement, the engagement, the commitment of the pharmaceutical industry.

Is it working? Can you hear me? Prof. Nwula, that's a very tough act to follow, I must say. My name is Nicola Lister. I'm the head of medical affairs and health systems engagement for Novartis Global Health. And I think that this is one of the true measures of success for us from a sickle cell disease perspective is looking around a room such as this and seeing country-led interventions for sickle cell disease with representation from organizations across the world. The true measure of success will really be when people living with sickle cell disease not only survive, but thrive, but this is a huge step forward. So as many of you will know, Global Health at Novartis was established in 2018. And over the last five to six years, we have had a very intentional approach to combating sickle cell disease, right from discovery of medicines through our development programs to delivery. We know that access is more than just access to the medicine in the palm of your hand. It's also about fit for purpose, research and development, And it's also about building health systems in the regions that are really having very high prevalence from sickle cell disease. So about five years ago, we started a very broad and very ambitious Africa sickle cell disease program, which kicked off in Ghana. That completed a number of years ago, and we have published the findings from that program. We have just completed a very similar program in Uganda, and those results will be coming out at ASTMH along with results from Kenya. And we also have an ongoing program in Tanzania. So as a founding member as well of the World Coalition, we are very committed to One Sickle Cell Disease. As a global partnership, you have Novartis's commitment to continue to have a seat at the table. to share the resources that we have, to share all the experiences we've had, the good, the bad, and the ugly, all the successes that we've had, so that we don't duplicate effort, and we can really amplify the results from this partnership. So, thank you very much, and congratulations to everyone once again.

Thank you very much, Nicola. And so, finally, we'd like to give the floor to Professor Juliana Kanyi representing Sickle Africa. Professor.

Thank you very much. So Sickle in Africa is a research network that is based in Africa where the biggest burden of disease is. It's estimated that of the 8 million people with sickle cell disease, 6 million of them live in Africa. And so we got together because we realized that we needed to work together and work fast in order to make an impact on the people living with sickle cell disease. And we've been able to establish a registry, improve standards of care, and conduct research. In addition to the work that's being done by Sickle in Africa, we're also working with REDACO, which is a research organization led by Leon Shiloh from Central African countries. And then finally, it's really to acknowledge that we're working to make sure that we not only improve the health of people living with sickle cell disease, but we actually find a cure for that. And this is work that we're doing as part of the Global Gene Therapy Initiative. We welcome, through these networks, through these institutions, individuals, and countries, we welcome the One Sickle Cell Disease partnership, and we look forward to working with you.

Thank you very much. So we are only eight or nine minutes behind. So that's, thank you so much for all your support, your commitment. Many more organizations are going to express their commitment as well. So we're going to be convening a stakeholder engagement opportunity to bring additional partners, additional ideas, additional brains and capacities. And so as we have heard, the goal for us is very clear. We need to improve diagnosis, improve access to treatment and care. develop stronger health systems and better outcomes for all the children and their families. But most importantly, this work must remain grounded in the voices of people living with sickle cell disease, as we have heard today from Leah and Courtney and from the communities that are mostly affected. So thank you to those who have shared their lived experience with us today. You remind us every day what is at stake and what we are accountable for delivering. So thank you to the government of Nigeria, again, our co-host governments, our speakers, panelists, and partners for bringing us to this moment. We have the science and we have the tools. What we need is the collective decision as a global community that a child born with sickle cell disease has the same chance at life, wherever she or he is born. And that collective decision was made today. As Leah said, stay gold. Stay innocent and keep dreaming, and we will reach there. So thank all of you for being part of this launch and for the commitment that you bring to transforming sickle cell care worldwide. We look forward to carrying this momentum forward together. And as we started the session thinking that this is a crime, but then it's a harmony, and this is where we will end. So thank you so much. That's it.