Woman with cystic fibrosis faces drug supply battle

A woman with cystic fibrosis has said she is facing a battle for supplies of a vital drug.

Hannah Richards from Flore, Northamptonshire, said she phoned 30 pharmacies to try to get Creon tablets.

She finally succeeded after a social media plea, but fears she will have to go through same search every month.

The government has recognised the supply problems and says it will "explore all options" for patients.

Ms Richards is one of thousands of people taking a drug called Kaftrio, which had its licence extended by the government in November.

She can get hold of Kaftrio, which she describes as "life-changing", but the supply problem affects a second drug which she needs so Kaftrio can do its job.

"For the Kaftrio to work, I have to have fat, but I can't have the fat without Creon.

"Without the tablet, I don't absorb the fat and it goes straight through me."

Ms Richards said her stocks ran low in March: "I spent Easter Saturday ringing round pharmacies in Northampton without a lot of success and worrying whether I would be able to eat over the Easter weekend."

She found 15 tablets - a day's supply at a pharmacy in Daventry.

She then took an afternoon off work to phone 30 pharmacies across Northampton, Milton Keynes and Towcester.

She now has a month's supply following a social media appeal but is not sure what will happen when that runs out.

She has been told the supply problem might last until 2026.

"I need some answers as to why it's happening, and I need pharmacists to talk to each other to say who's got a supply and who hasn't, [to avoid] a wild goose chase to find tablets all over the country."

David Ramsden, the chief executive of Cystic Fibrosis Trust, said: “Though distributors are working with manufacturers to boost production, we understand that this won’t take effect until 2026.

"It is vital that people with cystic fibrosis have access to the medicines they need to stay well and we urge all those involved to come up with new solutions now."

A spokesperson for the Department of Health and Social Care said: "The supply issues are due to limited availability of the active pharmaceutical ingredients and manufacturing constraints.

"Serious Shortage Protocols have been issued for Creon - 10,000 and 25,000 capsules - to allow pharmacists to limit supply to one month at a time.

"We continue to explore all options to help mitigate risks to patients."

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