Access for All: Ensuring all patients in the UK have access to the best treatments for haemophilia A

Every year in April, World Haemophilia Day is marked to raise awareness of haemophilia and other inherited bleeding disorders. To realise this year’s theme, ‘Access for All’, NHS England delivered a ‘smart procurement’ for treatments for haemophilia A, the most common and well-known type of the disorder.

Haemophilia is a rare genetic condition that affects the blood’s ability to clot, causing the body to bleed for longer than usual. This can lead to blood loss, which in some cases can be life threatening. There is currently no cure for the condition, but effective treatments can allow someone with haemophilia to enjoy a good quality of life.

The NHS’ ‘smart procurement’ approach is clinically-led and commercially driven. These types of procurement are designed to secure exceptional value for the NHS, above and beyond accessing medicines at the best possible price. ‘Smart procurements’ involve considering additional factors which can benefit the NHS and patients, such as whether a treatment is kinder to patients, more convenient or provides an opportunity to make better use of finite NHS resources such as clinician’s time.

The award-winning Blood Disorders Procurement team, made up of experts who are responsible for buying and securing the supply of medicines for rare blood conditions in the NHS, led the ‘smart procurement’ for haemophilia A medicines. For the first time in our history, we placed a significant weighting on the preferences of people with lived experience of the condition, instead of prioritising medicines based on responsible pricing.

To understand the true impact of these medicines from the perspective of people living with haemophilia A, we spoke to patients, their nurses and the Haemophilia Society, the only UK-wide charity for people affected by a bleeding disorder, to ask them what matters most to them. They told us that the way their medicines are administered and stored is really important, as well as how much excess packaging and waste is left behind by each product.

Using the insights shared, we set about prioritising the haemophilia A treatments which ticked the patients ‘exceptional value’ boxes. For example, we were told that excess packaging is a real concern for patients, so we placed higher value on ‘green’ products which reduce waste. As a result, clinicians will now prioritise prescribing treatments which are both the most clinically appropriate and offering additional value to their patients, as decided by them.

This procurement approach enabled us to secure access to all licenced medicines for haemophilia A at a price fair to taxpayers, with exceptional value reflected. Despite this wide portfolio of drugs made available, the procurement is still expected to deliver an annual saving, measured against historical spend, of between £5 million and £10 million across the UK. This saving represents about a 6 to 11% reduction in spend on haemophilia A products, enabling the NHS to further invest in new, innovative and promising treatments for even more patients.

Matthew Gregory, who has haemophilia A, spoke to the Blood Disorders Procurement team as part of the smart procurement. Sharing his experience, he said that he always felt valued, and that the team listened and took on board what he had to say:

“Having the patient voice involved in procurement of our medicines has helped to make sure things that matter to patients are considered. These include the size of packaging, ease and simplicity of administering a treatment, the amount of waste, the number of vials required to make one dose, and having a large range of products available to patients”.

This ‘smart procurement’ has transformed care for people with haemophilia A because at its heart, it embodied the principle of ‘Access for All’. Our patient-centred approach is leading the way for future initiatives which will help more people with other blood disorders have greater access to the treatments that offer exception value to them.

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Adam is the Head of Commercial Medicines Unit in the Commercial Medicines Directorate of NHS England. Adam is responsible for the overall tendering and supply chain strategies for secondary care. His team works very closely with the trusts, suppliers and trade bodies to ensure appropriate category frameworks are implemented and supply chain resilience is achieved for secondary care

Will Horsley is a pharmacist who has worked for NHS England in specialised commissioning since 2013. He has also been the lead commissioner for specialised blood disorders, including haemophilia, since 2016. Will has been involved in several national tenders and frameworks for blood and related products during that time.