{"disclaimer":"Transcripts available through this tool are created by using automatic speech recognition and are not official records nor official documents of the United Nations. Official records and official documents are available on the Official Document System of the United Nations.","url":"https://transcripts.un.org/en/asset/k1u/k1utjdtcre","llms":{"note":"Plain-text sibling of this page, compact for LLM context. 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A central theme was closing these stark global and within-country inequities so that sickle cell care is not limited by geography or income."}],"words":[{"text":"Yet","start":1279.99,"end":1280.15},{"text":"where","start":1280.15,"end":1280.35},{"text":"a","start":1280.35,"end":1280.39},{"text":"child","start":1280.39,"end":1280.71},{"text":"is","start":1280.71,"end":1280.87},{"text":"born","start":1280.87,"end":1281.19},{"text":"can","start":1281.19,"end":1281.43},{"text":"still","start":1281.43,"end":1281.75},{"text":"determine","start":1281.75,"end":1282.39},{"text":"their","start":1282.47,"end":1282.63},{"text":"access","start":1282.63,"end":1283.03},{"text":"to","start":1283.03,"end":1283.11},{"text":"diagnosis","start":1283.11,"end":1283.63},{"text":"and","start":1283.63,"end":1283.79},{"text":"care.","start":1283.79,"end":1284.07}]},{"text":"Leaders across healthcare, governments, UN agencies and civil society are joining forces to change that.","start":1284.71,"end":1291.67,"topics":[{"key":"global-partnership","label":"Global Partnership and Coordination","description":"The launch of One SCD itself reflected a broad discussion on coordinating governments, UN agencies, civil society, researchers, and philanthropy around country-led priorities. 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name is Helga Fokstad.","start":2927.91,"end":2929.27,"topics":[],"words":[{"text":"My","start":2927.91,"end":2928.07},{"text":"name","start":2928.07,"end":2928.31},{"text":"is","start":2928.31,"end":2928.43},{"text":"Helga","start":2928.43,"end":2928.71},{"text":"Fokstad.","start":2928.71,"end":2929.27}]},{"text":"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 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over to you, Carlos.","start":2947.99,"end":2949.39,"topics":[],"words":[{"text":"So","start":2947.99,"end":2948.35},{"text":"over","start":2948.35,"end":2948.55},{"text":"to","start":2948.55,"end":2948.67},{"text":"you,","start":2948.67,"end":2948.95},{"text":"Carlos.","start":2948.95,"end":2949.39}]}]}],"speaker":{"affiliation":"UNICEF","group":null,"function":"Director of Health Programs","affiliation_full":"UNICEF"}},{"statement_number":3,"start":2949.59,"pageUrl":"/en/asset/k1u/k1utjdtcre?t=49:10","paragraphs":[{"sentences":[{"text":"Thank you so much, Helga, my partner in crime, yes, for 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before I begin, I want to reflect briefly on the momentum that brought us to this moment.","start":2966.83,"end":2972.15,"topics":[],"words":[{"text":"But","start":2966.83,"end":2967.03},{"text":"before","start":2967.03,"end":2967.31},{"text":"I","start":2967.31,"end":2967.39},{"text":"begin,","start":2967.39,"end":2967.95},{"text":"I","start":2968.27,"end":2968.35},{"text":"want","start":2968.35,"end":2968.55},{"text":"to","start":2968.55,"end":2968.63},{"text":"reflect","start":2968.63,"end":2969.03},{"text":"briefly","start":2969.03,"end":2969.55},{"text":"on","start":2969.55,"end":2969.67},{"text":"the","start":2969.67,"end":2969.79},{"text":"momentum","start":2969.79,"end":2970.43},{"text":"that","start":2970.43,"end":2970.59},{"text":"brought","start":2970.59,"end":2970.91},{"text":"us","start":2970.91,"end":2971.23},{"text":"to","start":2971.23,"end":2971.39},{"text":"this","start":2971.39,"end":2971.63},{"text":"moment.","start":2971.63,"end":2972.15}]},{"text":"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.","start":2972.59,"end":2990.23,"topics":[],"words":[{"text":"So","start":2972.59,"end":2973.31},{"text":"just","start":2973.31,"end":2973.71},{"text":"a","start":2973.71,"end":2973.75},{"text":"year","start":2973.75,"end":2973.95},{"text":"ago,","start":2973.95,"end":2974.27},{"text":"at","start":2974.55,"end":2974.63},{"text":"the","start":2974.63,"end":2974.83},{"text":"2025","start":2974.83,"end":2976.11},{"text":"United","start":2976.71,"end":2977.11},{"text":"Nations","start":2977.11,"end":2977.43},{"text":"General","start":2977.43,"end":2977.71},{"text":"Assembly,","start":2977.71,"end":2978.15},{"text":"sickle","start":2978.15,"end":2978.47},{"text":"cell","start":2978.47,"end":2978.71},{"text":"disease","start":2978.71,"end":2979.19},{"text":"was","start":2979.19,"end":2979.67},{"text":"finally","start":2979.67,"end":2980.35},{"text":"included","start":2980.35,"end":2981.03},{"text":"in","start":2981.43,"end":2981.59},{"text":"the","start":2981.59,"end":2981.71},{"text":"UN","start":2981.71,"end":2982.07},{"text":"political","start":2982.07,"end":2982.55},{"text":"declaration","start":2982.55,"end":2983.19},{"text":"of","start":2983.19,"end":2983.35},{"text":"non-communicable","start":2983.35,"end":2984.31},{"text":"diseases,","start":2984.31,"end":2985.03},{"text":"alongside","start":2985.35,"end":2985.99},{"text":"a","start":2985.99,"end":2986.07},{"text":"new","start":2986.07,"end":2986.35},{"text":"ambition","start":2986.35,"end":2986.87},{"text":"to","start":2986.87,"end":2986.99},{"text":"improve","start":2986.99,"end":2987.35},{"text":"survival","start":2987.35,"end":2988.15},{"text":"for","start":2988.31,"end":2988.55},{"text":"children","start":2988.55,"end":2988.95},{"text":"affected","start":2988.95,"end":2989.39},{"text":"by","start":2989.39,"end":2989.59},{"text":"the","start":2989.59,"end":2989.75},{"text":"disease.","start":2989.75,"end":2990.23}]},{"text":"So our task now is to turn that commitment into action.","start":2990.87,"end":2994.95,"topics":[],"words":[{"text":"So","start":2990.87,"end":2991.11},{"text":"our","start":2991.11,"end":2991.27},{"text":"task","start":2991.27,"end":2991.83},{"text":"now","start":2991.83,"end":2992.23},{"text":"is","start":2992.23,"end":2992.47},{"text":"to","start":2992.47,"end":2992.63},{"text":"turn","start":2992.63,"end":2993.03},{"text":"that","start":2993.03,"end":2993.27},{"text":"commitment","start":2993.27,"end":2994.07},{"text":"into","start":2994.07,"end":2994.47},{"text":"action.","start":2994.47,"end":2994.95}]},{"text":"And that work must begin by listening to those whose lives are directly affected.","start":2995.43,"end":3000.95,"topics":[{"key":"patient-centered-governance","label":"Patient and Community Leadership","description":"People living with sickle cell disease, families, and community organizations were repeatedly described as essential partners in designing, evaluating, and 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The proceedings emphasized that lived experience should shape priorities from the start, not be added only at the end."}],"words":[{"text":"And","start":2995.43,"end":2995.75},{"text":"that","start":2995.75,"end":2995.99},{"text":"work","start":2995.99,"end":2996.39},{"text":"must","start":2996.39,"end":2996.63},{"text":"begin","start":2996.63,"end":2997.03},{"text":"by","start":2997.03,"end":2997.19},{"text":"listening","start":2997.19,"end":2997.67},{"text":"to","start":2997.67,"end":2997.83},{"text":"those","start":2997.83,"end":2998.15},{"text":"whose","start":2998.15,"end":2998.39},{"text":"lives","start":2998.39,"end":2998.95},{"text":"are","start":2999.27,"end":2999.43},{"text":"directly","start":2999.43,"end":3000.23},{"text":"affected.","start":3000.31,"end":3000.95}]},{"text":"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.","start":3001.71,"end":3014.55,"topics":[],"words":[{"text":"And","start":3001.71,"end":3001.83},{"text":"so","start":3001.83,"end":3001.99},{"text":"it","start":3001.99,"end":3002.07},{"text":"is","start":3002.07,"end":3002.23},{"text":"now","start":3002.23,"end":3002.39},{"text":"my","start":3002.39,"end":3002.63},{"text":"honor","start":3002.63,"end":3003.03},{"text":"to","start":3003.03,"end":3003.15},{"text":"invite","start":3003.15,"end":3003.79},{"text":"Dr.","start":3003.79,"end":3004.15},{"text":"Izak","start":3004.15,"end":3004.79},{"text":"Saleh,","start":3005.03,"end":3005.59},{"text":"the","start":3005.67,"end":3005.91},{"text":"Minister","start":3005.91,"end":3006.63},{"text":"of","start":3006.63,"end":3006.87},{"text":"State","start":3006.87,"end":3007.35},{"text":"for","start":3007.35,"end":3007.51},{"text":"Health","start":3007.51,"end":3007.95},{"text":"and","start":3007.95,"end":3008.07},{"text":"Social","start":3008.07,"end":3008.39},{"text":"Welfare","start":3008.39,"end":3009.03},{"text":"of","start":3009.51,"end":3009.59},{"text":"the","start":3009.59,"end":3009.71},{"text":"Federal","start":3009.71,"end":3010.07},{"text":"Republic","start":3010.07,"end":3010.79},{"text":"of","start":3010.79,"end":3011.03},{"text":"Nigeria,","start":3011.03,"end":3011.75},{"text":"to","start":3012.15,"end":3012.27},{"text":"deliver","start":3012.27,"end":3012.79},{"text":"our","start":3013.19,"end":3013.51},{"text":"official","start":3013.59,"end":3013.99},{"text":"welcome.","start":3013.99,"end":3014.55}]},{"text":"So Nigeria's leadership in bringing us together today reflects the country level commitment that will be essential to this effort.","start":3014.87,"end":3022.11,"topics":[{"key":"global-partnership","label":"Global Partnership and Coordination","description":"The launch of One SCD itself reflected a broad discussion on coordinating governments, UN agencies, civil society, researchers, and philanthropy around country-led priorities. 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Stronger data was linked to national planning, monitoring progress, and ensuring that commitments lead to results."},{"key":"sustainable-financing","label":"Sustainable Financing","description":"Several speakers called for stronger domestic financing, health insurance coverage, donor alignment, and catalytic philanthropy to scale care. The discussion framed financing as necessary to move from political commitments and pilots to long-term national implementation."}],"words":[{"text":"Second,","start":3269.39,"end":3270.11},{"text":"we","start":3270.11,"end":3270.23},{"text":"will","start":3270.23,"end":3270.35},{"text":"strengthen","start":3270.35,"end":3270.87},{"text":"national","start":3270.87,"end":3271.23},{"text":"accountability","start":3271.23,"end":3272.19},{"text":"through","start":3272.71,"end":3272.83},{"text":"better","start":3272.83,"end":3273.23},{"text":"data,","start":3273.23,"end":3273.71},{"text":"measurable","start":3274.19,"end":3274.83},{"text":"targets,","start":3274.99,"end":3275.63},{"text":"and","start":3275.71,"end":3275.87},{"text":"sustainable","start":3275.87,"end":3276.51},{"text":"financing.","start":3276.51,"end":3277.23}]},{"text":"Third, we will ensure that people living with sickle cell disease and their families remain at the center of policy, program, design, and evaluation.","start":3278.35,"end":3286.51,"topics":[{"key":"patient-centered-governance","label":"Patient and Community Leadership","description":"People living with sickle cell disease, families, and community organizations were repeatedly described as essential partners in designing, evaluating, and holding programs accountable. 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Speakers argued that durable progress depends on stronger national systems rather than isolated pilot projects."}],"words":[{"text":"It","start":3321.67,"end":3321.83},{"text":"must","start":3321.83,"end":3322.11},{"text":"be","start":3322.11,"end":3322.19},{"text":"more","start":3322.19,"end":3322.39},{"text":"than","start":3322.39,"end":3322.71},{"text":"a","start":3322.79,"end":3322.83},{"text":"ceremonial","start":3322.83,"end":3323.47},{"text":"moment","start":3323.47,"end":3323.99},{"text":"as","start":3324.55,"end":3324.71},{"text":"we","start":3324.71,"end":3325.11},{"text":"double","start":3325.11,"end":3325.55},{"text":"up","start":3325.55,"end":3325.67},{"text":"to","start":3325.79,"end":3326.15},{"text":"move","start":3326.47,"end":3326.71},{"text":"from","start":3326.71,"end":3326.95},{"text":"talk","start":3326.95,"end":3327.27},{"text":"attention","start":3327.27,"end":3327.91},{"text":"to","start":3328.39,"end":3328.63},{"text":"on-ground","start":3328.63,"end":3329.11},{"text":"implementation","start":3329.11,"end":3329.83},{"text":"attention.","start":3329.83,"end":3330.39}]},{"text":"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.","start":3331.11,"end":3344.63,"topics":[{"key":"care-equity","label":"Equity in Sickle Cell Care","description":"Speakers repeatedly stressed that a child's place of birth still determines access to diagnosis, treatment, survival, and quality of life. 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The discussion framed financing as necessary to move from political commitments and pilots to long-term national implementation."}],"words":[{"text":"And","start":5153.55,"end":5153.79},{"text":"also,","start":5153.79,"end":5154.19},{"text":"we","start":5155.63,"end":5155.87},{"text":"want","start":5155.87,"end":5156.15},{"text":"to","start":5156.15,"end":5156.23},{"text":"see","start":5156.27,"end":5156.51},{"text":"the","start":5156.51,"end":5156.59},{"text":"domestic","start":5156.59,"end":5157.15},{"text":"financing","start":5157.15,"end":5158.11},{"text":"coming","start":5158.75,"end":5159.15},{"text":"in.","start":5159.15,"end":5159.39}]},{"text":"But if we don't have a participatory approach, How will the governments know what they are able to finance?","start":5160.27,"end":5168.11,"topics":[{"key":"patient-centered-governance","label":"Patient and Community Leadership","description":"People living with sickle cell disease, families, and community organizations were repeatedly described as essential partners in designing, evaluating, and holding programs accountable. 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The discussion framed financing as necessary to move from political commitments and pilots to long-term national implementation."}],"words":[{"text":"So","start":5168.91,"end":5169.07},{"text":"it","start":5169.07,"end":5169.15},{"text":"has","start":5169.15,"end":5169.39},{"text":"to","start":5169.39,"end":5169.47},{"text":"be","start":5169.47,"end":5169.63},{"text":"sustainable.","start":5169.63,"end":5170.27}]},{"text":"It has to be defined based on the local resources available.","start":5170.27,"end":5174.35,"topics":[],"words":[{"text":"It","start":5170.27,"end":5170.35},{"text":"has","start":5170.35,"end":5170.59},{"text":"to","start":5170.59,"end":5170.71},{"text":"be","start":5170.71,"end":5170.83},{"text":"defined","start":5170.83,"end":5171.55},{"text":"based","start":5172.27,"end":5172.67},{"text":"on","start":5172.67,"end":5172.75},{"text":"the","start":5172.75,"end":5172.87},{"text":"local","start":5172.87,"end":5173.23},{"text":"resources","start":5173.23,"end":5173.79},{"text":"available.","start":5173.79,"end":5174.35}]},{"text":"So that's what we call the bottom-up participatory approach.","start":5175.39,"end":5178.67,"topics":[{"key":"patient-centered-governance","label":"Patient and Community Leadership","description":"People living with sickle cell disease, families, and community organizations were repeatedly described as essential partners in designing, evaluating, and holding programs accountable. 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Speakers argued that durable progress depends on stronger national systems rather than isolated pilot projects."}],"words":[{"text":"So","start":5340.79,"end":5340.91},{"text":"that's","start":5340.91,"end":5341.19},{"text":"the","start":5341.19,"end":5341.31},{"text":"systemic","start":5341.31,"end":5341.91},{"text":"change","start":5341.91,"end":5342.23},{"text":"and","start":5342.31,"end":5342.47},{"text":"the","start":5342.47,"end":5342.55},{"text":"journey","start":5342.55,"end":5343.03},{"text":"to","start":5343.19,"end":5343.59},{"text":"reaching","start":5343.75,"end":5344.47},{"text":"what","start":5344.71,"end":5345.03},{"text":"success","start":5345.75,"end":5346.15},{"text":"looks","start":5346.15,"end":5346.35},{"text":"like","start":5346.35,"end":5346.55},{"text":"for","start":5346.55,"end":5346.79},{"text":"us,","start":5346.87,"end":5347.19},{"text":"self-sufficiency,","start":5347.59,"end":5348.71},{"text":"that","start":5348.87,"end":5348.99},{"text":"these","start":5348.99,"end":5349.27},{"text":"countries","start":5349.27,"end":5349.99},{"text":"do","start":5350.31,"end":5350.39},{"text":"not","start":5350.39,"end":5350.63},{"text":"depend","start":5350.63,"end":5351.27},{"text":"anymore","start":5351.51,"end":5352.23},{"text":"on","start":5352.67,"end":5353.03},{"text":"funding,","start":5353.03,"end":5353.59},{"text":"for","start":5353.83,"end":5354.07},{"text":"example,","start":5354.07,"end":5354.55},{"text":"from","start":5354.87,"end":5355.11},{"text":"a","start":5355.11,"end":5355.15},{"text":"foundation","start":5355.15,"end":5355.67},{"text":"like","start":5355.67,"end":5355.91},{"text":"ours.","start":5355.91,"end":5356.39}]},{"text":"And on the hemophilia side, that is what several countries have reached already.","start":5357.39,"end":5361.75,"topics":[],"words":[{"text":"And","start":5357.39,"end":5357.51},{"text":"on","start":5357.51,"end":5357.59},{"text":"the","start":5357.59,"end":5357.71},{"text":"hemophilia","start":5357.71,"end":5358.15},{"text":"side,","start":5358.15,"end":5358.55},{"text":"that","start":5358.63,"end":5359.11},{"text":"is","start":5359.11,"end":5359.39},{"text":"what","start":5359.39,"end":5359.67},{"text":"several","start":5359.67,"end":5359.99},{"text":"countries","start":5359.99,"end":5360.31},{"text":"have","start":5360.31,"end":5360.63},{"text":"reached","start":5360.63,"end":5361.11},{"text":"already.","start":5361.19,"end":5361.75}]},{"text":"Now, this is what we should aim for also for sickle cell disease.","start":5362.55,"end":5366.79,"topics":[{"key":"sustainable-financing","label":"Sustainable Financing","description":"Several speakers called for stronger domestic financing, health insurance coverage, donor alignment, and catalytic philanthropy to scale care. 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A central theme was closing these stark global and within-country inequities so that sickle cell care is not limited by geography or income."}],"words":[{"text":"So","start":5369.35,"end":5369.59},{"text":"to","start":5369.59,"end":5369.75},{"text":"close,","start":5369.75,"end":5370.15},{"text":"as","start":5370.47,"end":5370.71},{"text":"mentioned,","start":5370.71,"end":5371.27},{"text":"where","start":5372.07,"end":5372.51},{"text":"a","start":5372.51,"end":5372.55},{"text":"person","start":5372.55,"end":5372.95},{"text":"lives","start":5372.95,"end":5373.35},{"text":"should","start":5373.75,"end":5373.99},{"text":"not","start":5373.99,"end":5374.27},{"text":"determine","start":5374.27,"end":5374.95},{"text":"whether","start":5375.19,"end":5375.83},{"text":"they","start":5375.91,"end":5376.11},{"text":"can","start":5376.11,"end":5376.31},{"text":"access","start":5376.31,"end":5376.63},{"text":"care.","start":5376.63,"end":5377.03}]},{"text":"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.","start":5378.31,"end":5388.47,"topics":[{"key":"global-partnership","label":"Global Partnership and Coordination","description":"The launch of One SCD itself reflected a broad discussion on coordinating governments, UN agencies, civil society, researchers, and philanthropy around country-led priorities. 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So, Minister Salako, Excellencies, distinguished delegates, and all our partners.","start":5957.47,"end":5963.47,"topics":[],"words":[{"text":"Thank","start":5957.47,"end":5957.79},{"text":"you.","start":5957.79,"end":5958.03},{"text":"So,","start":5958.67,"end":5958.83},{"text":"Minister","start":5958.83,"end":5959.31},{"text":"Salako,","start":5959.31,"end":5960.03},{"text":"Excellencies,","start":5960.03,"end":5961.15},{"text":"distinguished","start":5961.15,"end":5961.75},{"text":"delegates,","start":5961.75,"end":5962.27},{"text":"and","start":5962.27,"end":5962.43},{"text":"all","start":5962.43,"end":5962.67},{"text":"our","start":5962.67,"end":5962.75},{"text":"partners.","start":5962.75,"end":5963.47}]},{"text":"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.","start":5964.35,"end":5978.99,"topics":[{"key":"global-partnership","label":"Global Partnership and Coordination","description":"The launch of One SCD itself reflected a broad discussion on coordinating governments, UN agencies, civil society, researchers, and philanthropy around country-led priorities. 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A central theme was closing these stark global and within-country inequities so that sickle cell care is not limited by geography or income."}],"words":[{"text":"India","start":5964.35,"end":5964.79},{"text":"welcomes","start":5964.79,"end":5965.39},{"text":"the","start":5965.39,"end":5965.51},{"text":"launch","start":5965.51,"end":5965.95},{"text":"of","start":5965.95,"end":5966.15},{"text":"One","start":5966.15,"end":5966.43},{"text":"SCD","start":5966.43,"end":5967.23},{"text":"as","start":5967.31,"end":5967.63},{"text":"a","start":5967.63,"end":5967.71},{"text":"global","start":5967.71,"end":5968.19},{"text":"partnership","start":5968.19,"end":5969.07},{"text":"to","start":5969.47,"end":5969.55},{"text":"advance","start":5969.55,"end":5970.19},{"text":"equity","start":5970.19,"end":5970.91},{"text":"and","start":5971.23,"end":5971.43},{"text":"strengthen","start":5971.43,"end":5972.03},{"text":"the","start":5972.03,"end":5972.11},{"text":"global","start":5972.11,"end":5972.59},{"text":"response","start":5972.59,"end":5973.31},{"text":"to","start":5973.31,"end":5973.55},{"text":"sickle","start":5973.55,"end":5974.03},{"text":"cell","start":5974.03,"end":5974.27},{"text":"disease,","start":5974.27,"end":5974.83},{"text":"particularly","start":5974.83,"end":5975.63},{"text":"in","start":5975.63,"end":5975.79},{"text":"countries","start":5975.79,"end":5976.39},{"text":"and","start":5976.39,"end":5976.51},{"text":"communities","start":5976.51,"end":5977.35},{"text":"with","start":5977.35,"end":5977.51},{"text":"a","start":5977.51,"end":5977.55},{"text":"high","start":5977.55,"end":5977.87},{"text":"disease","start":5977.87,"end":5978.35},{"text":"burden.","start":5978.35,"end":5978.99}]},{"text":"SCD is not merely a genetic disorder, but an important public health and health equity issue, particularly affecting vulnerable and underserved populations.","start":5979.55,"end":5991.55,"topics":[{"key":"care-equity","label":"Equity in Sickle Cell Care","description":"Speakers repeatedly stressed that a child's place of birth still determines access to diagnosis, treatment, survival, and quality of life. 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Early diagnosis was presented as essential for preventing avoidable deaths and linking children quickly to care."},{"key":"comprehensive-care","label":"Comprehensive Lifelong Care","description":"Participants emphasized the need for continuous, high-quality care across the life course, including diagnosis confirmation, preventive services, specialist follow-up, emergency care, and medicines such as hydroxyurea. The discussion highlighted continuity between child and adult services and support for families living with a chronic condition."},{"key":"care-equity","label":"Equity in Sickle Cell Care","description":"Speakers repeatedly stressed that a child's place of birth still determines access to diagnosis, treatment, survival, and quality of life. 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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 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we invite now the honorable Christopher Tufton, the Minister of Health and Wellness of the government of 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gentlemen, Jamaica has lived this fight against sickle cell disease for over 70 years.","start":6285.11,"end":6292.63,"topics":[],"words":[{"text":"Distinguished","start":6285.11,"end":6285.63},{"text":"ladies","start":6285.63,"end":6285.87},{"text":"and","start":6285.87,"end":6286.03},{"text":"gentlemen,","start":6286.03,"end":6286.55},{"text":"Jamaica","start":6286.55,"end":6287.11},{"text":"has","start":6287.11,"end":6287.51},{"text":"lived","start":6287.51,"end":6288.07},{"text":"this","start":6288.55,"end":6288.87},{"text":"fight","start":6288.87,"end":6289.51},{"text":"against","start":6289.59,"end":6290.07},{"text":"sickle","start":6290.07,"end":6290.39},{"text":"cell","start":6290.39,"end":6290.59},{"text":"disease","start":6290.59,"end":6291.03},{"text":"for","start":6291.03,"end":6291.23},{"text":"over","start":6291.23,"end":6291.47},{"text":"70","start":6291.47,"end":6292.15},{"text":"years.","start":6292.15,"end":6292.63}]},{"text":"And I am happy to say we have some 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The discussion framed financing as necessary to move from political commitments and pilots to long-term national implementation."}],"words":[{"text":"Hydro,","start":6367.95,"end":6368.91},{"text":"sorry","start":6369.63,"end":6369.91},{"text":"for","start":6369.91,"end":6370.03},{"text":"the","start":6370.03,"end":6370.11},{"text":"pronunciation,","start":6370.11,"end":6371.03},{"text":"hydroxyurea","start":6371.03,"end":6371.79},{"text":"is","start":6372.19,"end":6372.43},{"text":"available","start":6372.43,"end":6372.87},{"text":"free","start":6372.87,"end":6373.11},{"text":"in","start":6373.11,"end":6373.23},{"text":"public","start":6373.23,"end":6373.55},{"text":"facilities","start":6373.55,"end":6374.23},{"text":"and","start":6374.23,"end":6374.35},{"text":"subsidized","start":6374.35,"end":6375.11},{"text":"in","start":6375.11,"end":6375.23},{"text":"private","start":6375.23,"end":6375.71},{"text":"pharmacies.","start":6375.71,"end":6376.43}]},{"text":"Research is being undertaken to improve uptake.","start":6377.11,"end":6379.71,"topics":[{"key":"data-accountability","label":"Data and Accountability","description":"Speakers highlighted the need for better surveillance, digital tracking, measurable targets, and health information systems for sickle cell disease. 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The discussion highlighted continuity between child and adult services and support for families living with a chronic condition."},{"key":"sustainable-financing","label":"Sustainable Financing","description":"Several speakers called for stronger domestic financing, health insurance coverage, donor alignment, and catalytic philanthropy to scale care. The discussion framed financing as necessary to move from political commitments and pilots to long-term national implementation."}],"words":[{"text":"Midwifery","start":6423.51,"end":6424.11},{"text":"shortages,","start":6424.11,"end":6424.95},{"text":"care","start":6424.95,"end":6425.35},{"text":"continuity,","start":6425.35,"end":6426.11},{"text":"and","start":6426.11,"end":6426.27},{"text":"sustainable","start":6426.27,"end":6426.87},{"text":"financing","start":6426.87,"end":6427.43},{"text":"remain","start":6427.43,"end":6427.75},{"text":"real","start":6427.75,"end":6428.15},{"text":"challenges","start":6428.15,"end":6428.71},{"text":"for","start":6428.71,"end":6428.91},{"text":"us.","start":6428.91,"end":6429.11}]},{"text":"as they do for every country in this room, I would imagine.","start":6429.79,"end":6432.63,"topics":[],"words":[{"text":"as","start":6429.79,"end":6429.87},{"text":"they","start":6429.87,"end":6429.99},{"text":"do","start":6429.99,"end":6430.23},{"text":"for","start":6430.23,"end":6430.39},{"text":"every","start":6430.39,"end":6430.63},{"text":"country","start":6430.63,"end":6430.99},{"text":"in","start":6430.99,"end":6431.11},{"text":"this","start":6431.11,"end":6431.35},{"text":"room,","start":6431.35,"end":6431.75},{"text":"I","start":6431.75,"end":6431.91},{"text":"would","start":6431.91,"end":6432.07},{"text":"imagine.","start":6432.07,"end":6432.63}]},{"text":"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.","start":6433.03,"end":6447.67,"topics":[{"key":"global-partnership","label":"Global Partnership and Coordination","description":"The launch of One SCD itself reflected a broad discussion on coordinating governments, UN agencies, civil society, researchers, and philanthropy around country-led priorities. 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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.","start":7232.39,"end":7240.71,"topics":[{"key":"global-partnership","label":"Global Partnership and Coordination","description":"The launch of One SCD itself reflected a broad discussion on coordinating governments, UN agencies, civil society, researchers, and philanthropy around country-led priorities. 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Speakers argued that durable progress depends on stronger national systems rather than isolated pilot projects."}],"words":[{"text":"We","start":7474.87,"end":7474.99},{"text":"will","start":7474.99,"end":7475.11},{"text":"support","start":7475.11,"end":7475.55},{"text":"health","start":7475.55,"end":7475.79},{"text":"workers","start":7475.79,"end":7476.23},{"text":"and","start":7476.23,"end":7476.39},{"text":"strengthen","start":7476.39,"end":7477.23},{"text":"supply","start":7477.23,"end":7477.59},{"text":"chains.","start":7477.59,"end":7478.15}]},{"text":"And we will help translate global commitments into measurable improvements in children's survival, health, and well-being.","start":7478.15,"end":7484.39,"topics":[],"words":[{"text":"And","start":7478.15,"end":7478.27},{"text":"we","start":7478.27,"end":7478.39},{"text":"will","start":7478.39,"end":7478.55},{"text":"help","start":7478.55,"end":7478.79},{"text":"translate","start":7478.79,"end":7479.35},{"text":"global","start":7479.35,"end":7479.75},{"text":"commitments","start":7479.75,"end":7480.39},{"text":"into","start":7480.39,"end":7480.55},{"text":"measurable","start":7480.55,"end":7481.19},{"text":"improvements","start":7481.19,"end":7481.99},{"text":"in","start":7481.99,"end":7482.15},{"text":"children's","start":7482.15,"end":7482.59},{"text":"survival,","start":7482.59,"end":7483.11},{"text":"health,","start":7483.35,"end":7483.71},{"text":"and","start":7483.71,"end":7483.87},{"text":"well-being.","start":7483.87,"end":7484.39}]},{"text":"Today, we ask partners to take action in three critical areas.","start":7485.03,"end":7488.23,"topics":[],"words":[{"text":"Today,","start":7485.03,"end":7485.27},{"text":"we","start":7485.27,"end":7485.43},{"text":"ask","start":7485.43,"end":7485.71},{"text":"partners","start":7485.71,"end":7486.07},{"text":"to","start":7486.07,"end":7486.15},{"text":"take","start":7486.15,"end":7486.39},{"text":"action","start":7486.39,"end":7486.79},{"text":"in","start":7486.79,"end":7486.95},{"text":"three","start":7486.95,"end":7487.27},{"text":"critical","start":7487.27,"end":7487.67},{"text":"areas.","start":7487.67,"end":7488.23}]},{"text":"First, to establish shared global targets for sickle cell disease that we can measure progress and hold ourselves accountable.","start":7488.79,"end":7495.55,"topics":[{"key":"data-accountability","label":"Data and Accountability","description":"Speakers highlighted the need for better surveillance, digital tracking, measurable targets, and health information systems for sickle cell disease. Stronger data was linked to national planning, monitoring progress, and ensuring that commitments lead to results."}],"words":[{"text":"First,","start":7488.79,"end":7489.19},{"text":"to","start":7489.19,"end":7489.27},{"text":"establish","start":7489.27,"end":7489.91},{"text":"shared","start":7489.91,"end":7490.27},{"text":"global","start":7490.27,"end":7490.67},{"text":"targets","start":7490.67,"end":7491.15},{"text":"for","start":7491.15,"end":7491.31},{"text":"sickle","start":7491.31,"end":7491.55},{"text":"cell","start":7491.55,"end":7491.79},{"text":"disease","start":7491.79,"end":7492.35},{"text":"that","start":7492.35,"end":7492.47},{"text":"we","start":7492.47,"end":7492.59},{"text":"can","start":7492.59,"end":7492.75},{"text":"measure","start":7492.75,"end":7493.11},{"text":"progress","start":7493.11,"end":7493.63},{"text":"and","start":7493.87,"end":7494.07},{"text":"hold","start":7494.07,"end":7494.27},{"text":"ourselves","start":7494.27,"end":7494.87},{"text":"accountable.","start":7494.87,"end":7495.55}]},{"text":"Second, to translate political commitments into national action, integrated into primary health care and national health plans.","start":7495.87,"end":7503.15,"topics":[{"key":"health-system-integration","label":"Integration into Health Systems","description":"A major topic was embedding sickle cell services into primary health care, maternal and child health, referral systems, and universal health coverage efforts. 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The discussion framed financing as necessary to move from political commitments and pilots to long-term national implementation."}],"words":[{"text":"And","start":7503.15,"end":7503.35},{"text":"third,","start":7503.35,"end":7503.79},{"text":"to","start":7504.11,"end":7504.23},{"text":"mobilize","start":7504.23,"end":7504.83},{"text":"sustainable","start":7504.83,"end":7505.39},{"text":"financing","start":7505.39,"end":7506.03},{"text":"for","start":7506.03,"end":7506.19},{"text":"a","start":7506.19,"end":7506.23},{"text":"response","start":7506.23,"end":7506.79},{"text":"that","start":7506.79,"end":7506.91},{"text":"has","start":7506.91,"end":7507.03},{"text":"been","start":7507.03,"end":7507.23},{"text":"underfunded","start":7507.23,"end":7507.95},{"text":"for","start":7507.95,"end":7508.11},{"text":"far,","start":7508.11,"end":7508.59},{"text":"far","start":7508.59,"end":7508.91},{"text":"too","start":7508.91,"end":7509.07},{"text":"long.","start":7509.07,"end":7509.47}]},{"text":"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.","start":7510.07,"end":7519.35,"topics":[{"key":"global-partnership","label":"Global Partnership and Coordination","description":"The launch of One SCD itself reflected a broad discussion on coordinating governments, UN agencies, civil society, researchers, and philanthropy around country-led priorities. 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the number of the deaths every single year are the same as the sickle cell disease.","start":8337.19,"end":8341.79,"topics":[],"words":[{"text":"where","start":8337.19,"end":8337.39},{"text":"the","start":8337.39,"end":8337.63},{"text":"number","start":8337.71,"end":8338.07},{"text":"of","start":8338.07,"end":8338.19},{"text":"the","start":8338.19,"end":8338.31},{"text":"deaths","start":8338.31,"end":8338.75},{"text":"every","start":8338.75,"end":8339.07},{"text":"single","start":8339.07,"end":8339.39},{"text":"year","start":8339.39,"end":8339.71},{"text":"are","start":8339.71,"end":8339.87},{"text":"the","start":8339.87,"end":8339.99},{"text":"same","start":8339.99,"end":8340.35},{"text":"as","start":8340.59,"end":8340.79},{"text":"the","start":8340.79,"end":8340.87},{"text":"sickle","start":8340.87,"end":8341.15},{"text":"cell","start":8341.15,"end":8341.35},{"text":"disease.","start":8341.35,"end":8341.79}]},{"text":"And 2026, that we have declared as the neglected cardiovascular 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Stronger data was linked to national planning, monitoring progress, and ensuring that commitments lead to results."}],"words":[{"text":"The","start":8370.87,"end":8371.07},{"text":"burden","start":8371.07,"end":8371.47},{"text":"is","start":8371.47,"end":8371.63},{"text":"11","start":8371.63,"end":8371.99},{"text":"times","start":8371.99,"end":8372.47},{"text":"what","start":8372.59,"end":8372.91},{"text":"the","start":8372.91,"end":8372.99},{"text":"death","start":8372.99,"end":8373.23},{"text":"certificate","start":8373.23,"end":8373.91},{"text":"show.","start":8373.91,"end":8374.23}]},{"text":"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.","start":8374.95,"end":8391.95,"topics":[{"key":"comprehensive-care","label":"Comprehensive Lifelong Care","description":"Participants emphasized the need for continuous, high-quality care across the life course, including diagnosis confirmation, preventive services, specialist follow-up, emergency care, and medicines such as hydroxyurea. 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thank you very much, and congratulations to everyone once again.","start":8562.01,"end":8565.53,"topics":[],"words":[{"text":"So,","start":8562.01,"end":8562.49},{"text":"thank","start":8562.81,"end":8563.05},{"text":"you","start":8563.05,"end":8563.13},{"text":"very","start":8563.13,"end":8563.29},{"text":"much,","start":8563.29,"end":8563.49},{"text":"and","start":8563.49,"end":8563.61},{"text":"congratulations","start":8563.61,"end":8564.57},{"text":"to","start":8564.57,"end":8564.69},{"text":"everyone","start":8564.73,"end":8565.05},{"text":"once","start":8565.05,"end":8565.29},{"text":"again.","start":8565.29,"end":8565.53}]}]}],"speaker":{"affiliation":"Novartis","group":null,"function":"Head of Medical Affairs and Health Systems Engagement","affiliation_full":"Novartis"}},{"statement_number":57,"start":8570.25,"pageUrl":"/en/asset/k1u/k1utjdtcre?t=2:22:51","paragraphs":[{"sentences":[{"text":"Thank you very much, 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