Rare disease sufferers wait two more years for life-changing treatment

Hereditary Angioedema patient Dana Shapiro has struggled to gain a specialist referral to access treatment for her condition

People living with rare diseases typically wait more than two years before getting life-changing medication, a new study by a specialist pharmaceutical company has shown.

The report, commissioned by Shire, says patients wait 28 months on average for the drugs they need and calls for a new process to evaluate rare disease medicines, which it sells.

To coincide with the report, the company assembled 1,000 teddy bears at London Waterloo to represent the estimated number of people with rare diseases that pass through the station every hour.

Among the many sufferers is Dana Shapiro, a 30-year-old Hereditary Angioedema patient living in London, who struggled to gain a specialist referral to access treatment for her condition.

Of the 143 medicines approved by the European Medicines Agency (EMA), less than half were funded by the NHS in England, compared to Germany, where 93 percent were funded, and where patients were afforded immediate access to treatment.