Haemophilia, disability,
and your rights

Yes. Under the UN Convention on the Rights of Persons with Disabilities (CRPD), disability includes people with long-term physical impairments that, in interaction with environmental and attitudinal barriers, hinder their full participation in society. Haemophilia meets this definition. It is a lifelong physical impairment. The barriers people with haemophilia face — in employment, healthcare, education, and daily life — are not caused by the condition itself but by a world that has failed to accommodate it. That is what makes them disabilities under international law.

People with haemophilia have enforceable rights under the CRPD, which has been ratified by 191 states. The key articles include: Article 19 (right to independent living and inclusion in the community), Article 25 (right to healthcare without discrimination, at an equivalent standard), Article 27 (right to work and employment, with reasonable adjustments), and Article 30 (right to participate in cultural life, recreation, and sport). These are not aspirational — they are legally binding obligations on governments.

In most countries with disability discrimination laws, you are not required to disclose a disability at the application stage. In the UK under the Equality Act 2010, haemophilia is likely to be considered a disability (as it is a long-term physical condition with substantial impact on day-to-day activities). You do not have to disclose before a job offer. After accepting, you may choose to disclose to request reasonable adjustments — but the employer must keep this confidential and cannot use it to discriminate against you.

Reasonable adjustments for someone with haemophilia might include: flexible working hours to attend treatment appointments, working from home on days following a bleed, a risk assessment of the physical environment, adjustments to the role if it involves physical risk, and time off for medical appointments counted as medical leave rather than sickness absence. What counts as 'reasonable' depends on the employer's size and resources — but the obligation to consider and implement adjustments is real, not optional.

No. Informed consent is a legal and ethical requirement. Any change to your treatment should be made with your meaningful agreement after you have been given clear information about the reasons, the alternatives, and the risks. Treatment switching driven primarily by cost — rather than clinical need — is a violation of informed consent principles and arguably of CRPD Article 25. If you are being pressured to switch treatment, you have the right to ask for the clinical rationale in writing and to seek a second opinion.

The social model holds that disability is not caused by impairment — it is caused by the barriers society creates around people with impairments. The impairment is the physical or mental condition. The disability is what happens when the world fails to accommodate it. Applied to haemophilia: the condition is the impairment. The inaccessible workplaces, the inadequate healthcare, the lack of recognition, the psychological burden of constant explanation — these are the disability. And because they are socially created, they can be socially removed.

The UN Convention on the Rights of Persons with Disabilities is an international human rights treaty adopted in 2006. It has been ratified by 191 states — more than any other UN human rights treaty in history. It creates binding legal obligations on governments to protect the rights of disabled people across all areas of life: healthcare, employment, education, independent living, political participation, and more. The UK ratified it in 2009. Ratification means the government is legally obligated to comply.

Between the 1970s and 1990s, thousands of people with haemophilia in the UK (and worldwide) were given blood products contaminated with HIV and Hepatitis C. The risks were known by officials and clinicians. People were not told. Documents were later destroyed. Over 30,000 people were infected across the UK. More than 3,000 have died — and that number is still rising. The Infected Blood Inquiry, which published its final report in May 2024, confirmed there was a deliberate cover-up at the highest levels of government. A compensation scheme was announced in 2024 but many families are still waiting.

Because haemophilia has historically been managed medically — by pharmaceutical companies, clinical systems, and national organisations often funded by industry. That framing treats it as a condition to be managed, not a disability to be accommodated. It is politically convenient for systems that would otherwise face legal obligations under disability law. The social model reframes this: haemophilia is not recognised as a disability because those with an interest in the current system have not wanted it to be.

The Haemophilia Rights Project is an independent advocacy project applying the social model of disability to haemophilia. It is run by Luke McLaughlin, who has haemophilia and has been involved in rights-based haemophilia advocacy since 2022. HRP accepts no donations, has no pharmaceutical associations, and has no funding that shapes its positions. It is connected with the European Network on Independent Living (ENIL) and has contributed to their published work.