A Hartlepool woman living with a rare neurological condition says time is of the essence as she campaigns for access to a vital drug for her and other people.

Georgia Hart, 29, had a normal start to life but at 15 she was diagnosed with Friedreich’s ataxia, a life threatening progressive disease which affects only an estimated 1,200 people in the UK.

Her mum Bev Hart says over the years she has watched the disease “take her away bit by bit” and Georgia now uses a wheelchair full time.

Her balance and coordination has been badly affected, she has a damaged heart as well as dealing with numerous other issues.

Georgia Hart (centre) with fellow members of the ataxia community in Westminster.

placeholder image — Georgia Hart (centre) with fellow members of the ataxia community in Westminster.

While there is no cure for Friedreich’s ataxia, a drug called Omaveloxolone (OMAV) can slow the disease’s progression.

It is available in America, much of Europe and Ireland. But despite being approved for use in England it is currently not available on the NHS.

Now Georgia and her family are urgently appealing for supporters to sign a petition, which closes on September 24, to secure a debate in Parliament on the issue.

Georgia said: “The petition is so important, we need 100,000 people to take two minutes out of their day to ensure the drug is debated in Parliament.

Georgia is urging people to sign an online petition to secure a debate in Parliament on access to a drug which slows the disease's progression.

“As you can imagine having a rare disease can be really isolating so the online community I have found is priceless. These groups are made up of people from the UK, Europe, America, Canada, Australia etc.

“I have made some of my best friends this way, this online community has become a daily part of my life. However, for the last few years the focus of these online spaces has been on OMAV and now I feel once again, isolated.

“It feels like England is the only country without access to the drug. Time is of the essence for people with FA, I have an incredible life and I want to enjoy it for as long as I can.”

Mum Bev added: “The disparity for living in England is beyond ridiculous. It’s like the place the world forgot.

“We are not going to give up.”

Georgia, who gained a psychology degree from Teesside University, has visited Parliament twice to campaign on the issue with the charity Ataxia UK.

Hartlepool MP Jonathan Brash raised the issue of access to Omaveloxolone for Friedreich’s ataxia patients during Prime Minister's Questions last November.

The government says independent body The National Institute for Health and Care Excellence (NICE) has been unable to develop guidance for the NHS treating Friedreich's ataxia patients over 16 with omaveloxolone because the drug’s manufacturer withdrew its evidence submission.

The Department of Health and Social Care said: “The Government recognises the concern and urgency felt by people affected by Friedreich’s ataxia and their families, particularly given the progressive nature of the condition.

“The Government remains committed to improving access to effective and innovative medicines for patients. NICE cannot evaluate omaveloxolone unless the company re-engages with its appraisal.”

It added funding a medicine before a positive recommendation by NICE risks creating temporary access to a treatment that could be withdrawn later.

To sign the petition, go to https://petition.parliament.uk/petitions/760461