At 2.30pm, on Tuesday, 16 June 2015, members of the House of Commons slotted into the green leather seats at Westminster Hall to debate “access to drugs for ultra-rare diseases.” Numerous patients and their families watched on from the public gallery that is located at the side of the debating chamber, and were reminded not to take photos of the event.
Greg Mulholland, the House of Commons representative from Leeds North West, secured the debate. The forty-five year old member from the Liberal Democrat party has short grey hair and wore a black textured suit, white shirt, and a black with purple stripe British Regiment style tie. He opened the meeting as follows:
I got involved in [this] issue because Katy and Simon, the parents of Sam Brown, a six-year-old boy in my constituency, came to see me… For the past three years, Sam has been doing a 100-mile trip from Otley to Manchester every Thursday to get Vimizim, his enzyme replacement therapy…
