This article is dedicated to the memory of Seamus Conway, and to all those across Europe who lost their lives as a result of contaminated blood products.
Today is World Haemophilia Day. You may be wondering why ENIL – an organisation rooted in Independent Living principles and the broader disability rights movement – is spotlighting a rare bleeding disorder. Haemophilia is a genetic condition in which the blood does not clot properly. There is no shortage of clinical literature on what it does to the body. What this article explores is why haemophilia rights are a disability rights issue – and why that distinction matters for how we understand access to treatment across Europe.
Treatment for severe haemophilia can cost anywhere from €200,000 to over €500,000 per patient per year. That is the annual cost of keeping one person alive and functional. When something costs that much and affects so few people with limited political voice, a particular logic tends to emerge in clinical decisions, pressured by economic commissioning frameworks. The logic runs something like this: this is expensive, these people are few, what is the minimum we can get away with?
The Infected Blood Inquiry, which published its final report in May 2024, documented where that logic leads. Contaminated products were cheaper. The risks were known. The information was concealed. Thousands across the United Kingdom were infected with HIV and hepatitis C. Thousands died. The cover-up lasted decades. That is what happens when cost outweighs rights.
Haemophilia has long been treated as a medical condition requiring medical management. That framing misses something important. The social model of disability holds that it is not impairment itself that disables people but the barriers society places around them. Applied to haemophilia this becomes clear quickly. Inaccessible treatment, cost-driven clinical decisions, denial of informed consent – these are not inevitable features of the condition. They are failures of structure and policy.
Independent Living principles sharpen this further. Independent Living is about control – the right to make decisions about your own life, your own care, your own body, free from dependence on institutional goodwill. A person with haemophilia whose treatment is switched without meaningful consent, whose clinician is constrained by tender outcomes, who has no say in decisions that directly affect their quality of life, is not living independently. They are subject to institutional discretion in exactly the way Independent Living principles exist to challenge. Haemophilia belongs on the disability spectrum not because of what it does to the body but because of what institutions do to the person living with it.
The evidence shows the same condition, the same biological reality, the same binding obligations under the UN Convention on the Rights of Persons with Disabilities, producing three substantially different outcomes across Europe. The difference comes down to the framework each system applies to one underlying question: what is a person with haemophilia actually entitled to?
In Germany, regulatory changes moved treatment distribution toward community pharmacies. Patients collect and self-administer their own treatment, maintaining genuine autonomy over their care. Germany records the highest average per-patient treatment expenditure in Europe, and research shows people with haemophilia there report health-related quality of life on par with the general population – the highest in Europe. This is broadly what CRPD Article 25 requires.
In the UK the picture is different. Clinical decisions, pressured by economic commissioning frameworks, produce outcomes the All-Party Parliamentary Group on Haemophilia and Contaminated Blood documented in detail – a system where cost accounts for 75% or more of tender decisions, where commissioners have issued directives to switch stable patients away from their preferred treatment to cheaper alternatives, and where patient choice is effectively decided before the clinical conversation begins. People with haemophilia in the UK report the lowest health-related quality of life among five major European countries studied. UK clinicians are no less qualified than their German counterparts. The difference is not the doctor. It is the framework the doctor operates within.
There is a further irony in the British system. Mass switches to newer therapies have created instability for patients who were stable on older treatments – whether by clinical need or because they cannot tolerate the alternatives. The APPG documented the pressure this creates on patients who find their existing treatment increasingly difficult to justify to commissioners.
The picture within the UK is further complicated by the way responsibility for healthcare is divided across its four nations – and it serves as a pointed example of how health inequality for people with haemophilia can exist not just between European states but within the borders of a single one. Scotland has accepted the Infected Blood Inquiry’s recommendation on haemophilia care oversight in full. Northern Ireland has accepted it in principle only, with no legislation following. A person’s access to care varies depending on which side of an internal administrative boundary they happen to live on – not because the clinical need differs, but because the political response does.
In parts of eastern Europe the gap is deeper still. Romania only introduced regular prophylactic replacement as standard care in 2016. Factor VIII consumption per capita across eastern European countries remains a fraction of western European levels. As the European Haemophilia Consortium’s own leadership has acknowledged publicly, in some countries even basic on-demand care is not reliably available, with vested interests and corruption limiting access. Some patients receive treatment only through participation in clinical trials – described in the research literature as clandestine prophylaxis. That is a rights failure presented as a resource problem.
Rights cost money. That is not an argument against them – it is a question of who bears the cost. The system or the person.
The infected blood scandal was not primarily a clinical failure. It was an institutional decision that certain lives were acceptable losses. The treatment gap in eastern Europe is not primarily a resource problem. It is a breach of CRPD Article 25 – the right to healthcare without discrimination, at an equivalent standard, as close as possible to where you live.
One in four Europeans live with a disability. That is not a marginal community, that is one of the largest political constituencies in Europe. For rare conditions like haemophilia – affecting too few people to command political attention alone – cross-condition, cross-border solidarity with the broader disability movement is not optional. It is the only mechanism that makes rights enforceable in practice.
Our argument in haemophilia advocacy has been too narrow, allowing states to frame the problem as funding alone. The infected blood families knew otherwise – thirty years of resistance proved the rights argument wins when it is made clearly and refused to be buried. That lesson belongs to the whole disability rights movement.
On 2 February 2026, the World Health Organisation discussed haemophilia at its Executive Board for the first time. The resolution was proposed by Armenia and co-sponsored by Bosnia and Herzegovina, Egypt, Georgia, Iraq, Latvia, Malta, Morocco, Nepal, Paraguay, Spain, Sri Lanka and Togo – predominantly low/middle income countries with direct experience of what inadequate access costs. The Infected Blood Inquiry. The British parliamentary evidence on commissioning failure. The WHO resolution. Taken together, these point toward something the current clinical establishment has not yet been willing to say directly – that haemophilia is a disability rights issue governed by binding legal obligations, not clinical and institutional discretion.
The half a million euro question is not whether we can afford to treat people with haemophilia properly. It is whether we can afford not to.
Luke McLaughlin
@haemophiliarightsproject
