The rise in the Voluntary Scheme for Branded Medicines Pricing means that NHS patients with rare conditions are missing out on the latest innovations, says ABPI. 

A survey by the Association of the British Pharmaceutical Industry (ABPI), the organisation that represents companies that research and develop medicines and vaccines, and the Bioindustry Association (BIA) of pharmaceutical companies developing medicines to treat rare diseases has found that it is becoming harder to bring new medicines, including those for rare and ultra-rare diseases, to NHS patients.

Out of the 18 companies that responded, 11 reported that less than 75% of their rare disease pipeline is expected to be launched in the UK over the next five years.

Reasons for this included the low likelihood of a positive reimbursement decision from the National Institute for Health and Care Excellence (NICE) and the increasingly unfavourable commercial environment in the UK, characterised by what is described as “the rocketing and unpredictable” medicines rebate rates under the Voluntary Scheme for Branded Medicines Pricing (VPAG) – now at 22.9% of industry UK turnover in 2025. 

At the time of the survey, rebate rates were at 15%, well above the 6.8% average between 2014 and 2022.

At the heart of ABPI’s concern is the rise in the Voluntary Scheme for Branded Medicines Pricing and Access payment rate. 

As Healthcare Today wrote at the beginning of February, the industry will need to pay around £3.4 billion to the government this year, which is more than the total payments made over the five-year scheme 2014-2018.

At the time, the ABPI pointed out that NHS currently invests a smaller share of overall healthcare costs on medicines than any comparable country. In Britain, it makes up 9% of the country’s overall healthcare spend compared to Germany and Italy, which invest 17%, or France, which invests 15%.

“The latest action plan on rare diseases does many good things, but unless we address the UK’s historic and ongoing disinvestment in medicines, we will continue to see NHS patients with rare conditions missing out on the latest innovations,” said Richard Torbett, chief executive of the ABPI. 

“This means fixing the current skyrocketing repayment rates under the Voluntary Scheme for branded medicines and making sure that the way NICE evaluates medicines for rare diseases does not prevent companies from bringing them to the UK,” he continued.