Suzanne’s story – access to medicine and treatment in the UK
Suzanne is the chairman of Mutual Support, a support-group for military personnel diagnosed with MS. She co-founded the volunteer-led group in 1991 when she was diagnosed with relapsing-remitting MS whilst serving in the Royal Air Force as an instructor.
Suzanne had used disease-modifying drugs (DMDs) but they had stopped working. She heard about a newer DMD, called Tysabri, but she wasn’t eligible for it due to medical reasons. She’d been dealing with lots of relapses so when Gilenya was licensed she was really pleased. However her local NHS Trust in Gloucestershire failed to fund treatment.
What did she do?
Suzanne used a template letter from the UK MS Society to write to the CEO of her local NHS trust. She had support from her MS nurse and neurologist, who could both see how the drug would benefit her.
Suzanne described her letter as ‘forceful’. She explained how she met the criteria and that the drug was being given to MS patients elsewhere in the UK. She also talked about the frequent relapses she’d be having and the damage that was being done to her body by not being on the drug.
The trust initially wrote back explaining that the problem was with ‘protocol’, and within a few months Suzanne was able to access the drug. Two other people in Gloucestershire received their first treatment the same day she did.
How has it changed her life?
In the year before treatment Suzanne had 6 disabling relapses and courses of steroids. Since using the drug she had none. She said that the treatment has transformed her life.
The fear of relapses was very real. They disrupted her whole life, bringing new disabilities each time and both Suzanne and her neurologist feared that the frequency of relapses meant she was heading towards secondary progressive MS.
We asked Susanne what she would say to other people in her position. She said: “Stand up for your right to be treated with approved and licensed drugs that will improve your quality of life. A lack of funding and poor administration should not get in the way of any treatment you are eligible for. You need to stand up and shout, take control of your life and your health – because no one else will do it for you!”