Will we still need haemophilia centres� in the future?

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Mike Makris

Sheffield, UK

Will we still need haemophilia centres� in the future?

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Answer: Yes, but centres will need to evolve

Why do I need to waste my time going to a haemophilia centre?

1. I have severe haemophilia
2. My treatment is:

Gene Therapy

Emicizumab (Hemlibra)

Extended half life FVIII or IX

• My treatment is delivered to my home by a commercial company
• I am not having any bleeds

Haemophilia centres need patients to be registered and to attend��No haemophilia patients = No haemophilia centre

USA example

• Patients choose whether to be followed up by a centre or not
• Insurance companies are happy not to pay for hospital attendances
• Number of patients attending the hospital reduces
• Not enough patients for the hospital to make money
• Hospital closes their haemophilia centre

Situation in Europe

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• Not many pure insurance based centres
• Universal healthcare
• Haemophilia centres are changing
• Most centres in Europe are now Haemophilia and Thrombosis centres
• Thrombosis is a major and expanding issue

Sheffield Haemophilia and Thrombosis Centre workload�(Adult only centre)

Why do persons with severe haemophilia attend in Sheffield?

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• Outpatient clinic reviews
• Surgery
• Some dental procedures
• Bleed after injury they can not manage at home
• Almost never with spontaneous bleed

Why do severe haemophilia patients who do not bleed need a haemophilia centre?

1. None of the current treatments cure haemophilia

Haemophilia can still be transmitted

• Clotting is not “normal”

Will need factor treatment for injuries and surgery

• Coagulation tests can be misleading and the appropriate tests may not be available in most hospitals
• Need monitoring for inhibitor development
• Need experts to manage your thrombosis or heart disease (30% chance)

You may need anticoagulant treatment

What to expect from your centre?

• Able to see you 24/7
• To have an expert in haemophilia on call 24/7
• To have stocks of all concentrates in the hospital
• To have a laboratory able to do the specialist tests 24/7
• Able to support surgery 24/7

Haemophilia centres in the future

• Less but with more facilities and greater availability
• All treatments delivered to patients’ home
• More digital appointments – telephone and video
• Blood samples can be taken locally and sent to the centre
• Nurses will be delivering most of the care for severe haemophilia
• Centres will be externally audited

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Will we still need haemophilia centres� in the future?

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YES