October 6th, 2011
A Gourock grandmother with a rare blood disorder will be at the Scottish Parliament seeking answers to why she has been refused life-saving treatment by NHS Greater Glasgow and Clyde.
Joyce Juszczak, 65, will sit in on health questions in the chamber this afternoon to hear the Health Secretary’s response to the issue raised by her MSP Duncan McNeil.
Ms Juszczak has undergone eight blood transfusions in the last year since being diagnosed with Paroxysmal Nocturnal Hemoglobinuria, a rare blood disorder which can be treated with the drug eculizumab.
But she has been refused the treatment by her health board, despite meeting the criteria, having the support of her consultants.
Eculizumab is nationally prescribed in England and Wales and patients in other Scottish health boards have received the treatment.
Duncan McNeil, MSP for Greenock and Inverclyde, said: “Ms Juszczak and her family remind us all that this is about more than health outcomes and value for money, this is about real people and the quality of their lives.
“They are only asking for what anyone else in their position would want and it seems only bureaucracy is preventing my constituent from receiving treatment that would improve and prolong her life.
“It does not seem fair that someone should be turned down for this treatment because they live in Gourock while someone just a few miles down the road in Ayrshire would be eligible.”