People with rare diseases are failing to receive vital medical treatment because their illnesses are not recognised in guidelines that govern the distribution of NHS-approved drugs.
Health experts who fear that a new framework governing drug allocation that comes into force next year could see some people lose out.
Anglea Tyermans, 38, who has arteriovenous malformations (AVMs), an extremely rare cardiovascular defect that affects less than 1% of the population, fears she will die if she does not receive a course of injections approved by Nice, the clinical body that oversees drug allocation on behalf of the NHS.
Her primary care trust in West Sussex will not pay the £15,000 for her to have the one-off treatment, which her lawyers say will arrest her illness. Experts appointed by West Sussex PCT said "further research" was required.
Rare Disease UK, an alliance of organisations that support people with uncommon illnesess, estimates there are more than 6,000 rare diseases that will affect 1 in 17 people in the UK.
A new commissioning board next year will oversee the allocation of medicines to end the "postcode lottery" that sees some patients deprived of a drug because of where they live.
But Alastair Kent, chair of Rare Disease UK, warned economising could have an impact on how the board determines future allocations of drugs.
Kent said: "The rhetoric is about everybody achieving better healthcare but for the rhetoric to meet the reality is a huge ask." The Guardian
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