Hartlepool Friedreich's ataxia patient cheers campaign to secure Parliament debate on wonder drug Omaveloxolone
A Hartlepool woman campaigning for access to a life-enhancing drug says she is proud after a petition secured 100,000 signatures to secure a debate in parliament.
Georgia Hart, who has Friedreich’s ataxia, a progressive disease, was part of a national drive urging people to sign the online petition for the NHS to fund a drug which could slow its progression.
Omaveloxolone (OMAV) 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.
The petition gained tens of thousands of signatures to ensure the issue will be debated by MPs in the House of Commons.
Georgia, 29, whose balance and coordination has been badly affected by the condition, said: “I am so pleased we managed to get 100,000 signatures it has been overwhelming and I am beyond proud of our small rare disease community coming together and demonstrating a united front.
“However, a parliamentary debate does not mean automatic access to the drug, if anything this achievement has made me more determined. I am so hopeful that we get this drug but we need to keep the campaign going.”
After reaching the target, the petition will now be considered by the Petitions Committee for a debate in Parliament.
The Department of Health earlier said the Government remains committed to improving access to effective and innovative medicines.
But it said the makers of OMAV have pulled out of an evidence appraisal process with independent body National Institute for Health and Care Excellence, needed before the NHS will fund a medicine.