WhenHumphrey Haji walked to the podium at the Best Western Hotel in Nairobi, hepaused before speaking.
Livingwith haemophilia has shaped every part of his life, and standing in front of aroom filled with policymakers, clinicians and partners felt like a rare momentof hope.
Humpreywas only five when he had his first case of unusual bleeding, and in 2007, hetripped while playing football, an injury which led to his diagnosis and lefthim in crutches.
“I havelived with haemophilia since I was born,” he later narrated.
“There arechallenges every day. At home, in school, even in explaining yourself to peoplewho do not understand what haemophilia is.”
Humphrey wasamong patients and stakeholders who witnessed what the Novo Nordisk HaemophiliaFoundation called a “new horizon”.
OnThursday, the organisation officially unveiled its expanded identity, the NovoNordisk Haemophilia and Haemoglobinopathy Foundation (NNHHF), marking its entryinto sickle cell disease and thalassemia support.
ForHumphrey, this shift means more than a change of name.
“Psychosocialsupport will help us live better and access care earlier,” he said. “We hopethe government can step in and help us get medication consistently.”
“A newchapter begins today”
Haemophiliais a medical condition in which the ability of the blood to clot is severelyreduced, causing the patient to bleed severely from even a slight injury.
Thecondition is typically caused by a hereditary lack of a coagulation factor,most often factor VIII.
Sicklecell is an inherited disorder affecting the shape of red blood cells, whichcarry oxygen to all parts of the body.
In sicklecell anaemia, some red blood cells are shaped like sickles or crescent moons.These sickle cells also become rigid and sticky, which can slow or block bloodflow.
Thalassemiais an inherited blood disorder that affects your body’s ability to producehemoglobin and healthy red blood cells.
Dr NatashaHonan, Senior Advocacy and Communications Manager at NNHHF, said theFoundation’s expansion reflects real needs across Africa.
“Todaymarks the expansion of the Foundation,” she said. “We are now able to supportpeople living with sickle cell disease and thalassemia.”
She notedthat most of the global burden for these diseases lies in low- andmiddle-income countries, noting that they have collaborated with thesecountries to shine a light and bring hope to the patients and their families.
“Kenya hasbeen a partner for more than 10 years,” she said, “and as we explore into newhorizons, we will continue to deepen our support”.
“We haveworked closely with the Kenya Haemophilia Association to improve diagnosis andoutreach. We will continue doing so as we move into this new chapter.”
She alsohighlighted the integrated care model introduced in 2019, which allows patientswith haemophilia and sickle cell disease to receive services under one roof.
“It easesthe patient journey. People do not have to move from one clinic to another,”she said.
Honanstated that NNHHF aims to support 15 countries to reach self-sufficiency by2030.
“By that,we mean that they are no longer reliant on external support, so they will havea strong patient organisation in place, training needs will be met with thehealth workforce within the country, treatment will be available and thecountry actually takes ownership of haemophilia care, meaning that haemophiliacare is anchored in the public health system,” she explained.
Haemophilia advocate patient Humphrey Haji, addesses the media during the unveiling of new horizons of the Novo Nordisk Haemophilia and Haemoglobinopathies Foundation at the Best Western Meridian hotel on December 11, 2025/LEAH MUKANGAI
Diagnosisremains a major challenge
TheMinistry of Health echoed these concerns. Dr Yvette Kisaka, the Technical Leadfor NCDs, said the conditions have suffered from longstanding neglect.
“Theseconditions have been neglected for a very long time,” she said. “Our goal is toprovide the highest quality of care without leaving anyone behind. It is notaspirational; it is a constitutional right.”
She saidKenya has introduced infant screening guidelines and updated treatmentprotocols. But diagnosis remains low.
Kisakastated that the government is now screening children beyond six months toensure that they do not miss any cases that might have been overlooked duringearlier screening.
“Inaddition to the policy guidelines, we have treatment guidelines for sickle celland haemophilia. They are in place to ensure that our health care workers havethe right capacity to be able to manage this condition,” she said.
She saidso far, there are over 1,000 known haemophilia patients, yet the estimate ismuch higher.
“Whilesomeone may say this is minimal, for that one person who is not so sure whetheror not they will be able to get up tomorrow, it is a big issue,” she said.
“Even onechild living with chronic pain or fear of bleeding is one too many.”
For sicklecell disease, she said about 14,000 Kenyan children are born with the conditioneach year.
“We areentering an integrated future,” Kisaka, who also sits at the HematologicalConditions Technical Working Group, said.
She notedthat sickle cell and haemophilia have been largely neglected, stating that theministry is working to ensure that is no longer the case.
“But theMinistry has taken very key measures to ensure it aligns with the UHCaspirations of ensuring that everyone gets access to quality of care withoutreally suffering from any financial hardship,” she said.
Kisakaacknowledged the challenge of health financing, stating that they are havingdiscussions around SHA and the three inclusive funds for the inclusion of benefitpackages on sickle cell and haemophilia.
“All theway from diagnosis to management at the facility level to referrals,” she said.
DrJeremiah Shem, Chair of the Medical Advisory Committee at the Kenya HaemophiliaAssociation, said the expansion signals a turning point.
“We are ina very new chapter,” he said. “From today onwards, haemophilia and other blooddisorders will be treated together through an integrated program.”
He saidintegration will bring joint advocacy, shared training and stronger capacitybuilding.
“Thismeans combined programs for haemophilia, sickle cell disease and thalassaemia,”he said. “We will now see coordinated care across the country.”
Dr Shemhighlighted the biggest barrier: diagnosis and financing.
“We have1,430 haemophilia cases diagnosed out of an expected 6,000,” he said.“Diagnosis is expensive. A single test can cost between Sh5,000 and Sh10,000.”
He praisedpartners for bringing modern diagnostic equipment into the country.
“We usedto send samples to South Africa, the UK or the US,” he said. “Now we candiagnose locally and faster.”
Medicationalso remains a challenge, he said. Hydroxyurea, used for sickle cell disease,is becoming available in county hospitals. But haemophilia medication is stillcostly.
“A singleinjection of factor replacement therapy can cost Sh50,000 to Sh150,000,” hesaid. “Thanks to partners, these drugs are now available free. This is a bigwin.”
Amoment filled with hope
As a newhorizon was unveiled, Humphrey reflected on what the day meant.
“There aremany of us who struggle silently,” he said. “This new beginning gives us hope.If we diagnose early and support families, many people can live full lives.”
Still, hesaid, “There are almost 2,500 of us now on care,” he said. “Awareness andadvocacy have helped. If the government and partners do more, many people willlive normal lives.”
ForKenya’s blood disorders community, the message was clear: a long-awaitedchapter has finally begun.
Panelists during the unveiling of new horizons of the Novo Nordisk Haemophilia and Haemoglobinopathies Foundation at the Best Western Meridian hotel on December 11, 2025/LEAH MUKANGAIDrJeremiah Shem, Chair of the Medical Advisory Committee at the Kenya HaemophiliaAssociation, during unveiling of new horizons of the Novo Nordisk Haemophilia and Haemoglobinopathies Foundation at the Best Western Meridian hotel on December 11, 2025/LEAH MUKANGAIMinistry of health sickle cell and cardiovascular technical lead Dr. Yvette Kisaka speaking during the unveiling of new horizons of the Novo Nordisk Haemophilia and Haemoglobinopathies Foundation at the Best Western Meridian hotel on December 11, 2025/LEAH MUKANGAI
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