When Antoine learned in 2009 that he had relapsing remitting multiple sclerosis, he felt shocked but also relieved. He had sought help after losing vision in one eye, feeling ‘pins and needles’ in his head and suspecting he might have a fatal illness. “I felt happy not to have a brain tumour,” he recalls.
He decided to keep his diagnosis private. At his engineering job at a medical devices plant in his native France, he kept a smile on his face even as he struggled to focus and steady himself going up and down the stairs. When it came time for his annual review, his boss told him that his performance had declined and the company wanted to let him go. “They didn’t know I had MS,” Antoine, 44, recalls. “I cracked and I cried.”
The experience was early in Antoine’s journey with MS, an immune-mediated disease that affects 2.9 million people1 and is the leading cause of non-traumatic disability in young people. But Antoine has since embraced transparency. Today, as one of the 1,500 members of CareRing, an internal community of employees who are also patients or caregivers, he regularly shares details about his life with MS to help Roche improve delivery of care. The CareRing community is designed to create a safe, trusting space for members to share their experiences, connect and contribute to projects related to relevant disease areas.
Collaborating with patient communities (including patient organisations, patients and their families, etc.) enables us to better understand unmet needs and co-create solutions that support personalised healthcare from an early stage of drug development through to the delivery of care.
As a Roche patient expert since 2019, Antoine’s courage, honesty and passion for sharing a patient perspective has contributed to valuable outcomes. His feedback has ensured that our patient-facing materials are easy to understand and that Roche’s integrated strategic plan (iSP) for MS is focused on meeting patient needs. “Antoine was a great person to have on the team as he brought not only his own lived experiences but also a broader perspective from the patient community,” said Marco Parisi, who led the development of the iSP for MS. “He has helped us build a strategy that is based on the needs of patients and what a ‘win’ in MS looks like for them.”
Antoine’s voice has also helped Roche colleagues better understand the experiences of people with MS and has been a valued addition to our training we provide on Ocrevus, our MS therapy.
Antoine joined Roche on a work placement organised through a government-run scheme that provides reintegration opportunities and financial support for people with disabilities. Roche is committed to advancing the inclusion of people with disabilities through our Valuable 500 pledge. Antoine’s placement was facilitated by the RocheAbility network, which promotes disability inclusion, and was one of the first of its kind for Roche. Since then, he has been consulting with us for about four hours a week when he feels well enough and is not attending rehabilitation for his MS.
“Having a patient on our team is something unique across the industry,” says Christine Eighteen, Roche’s Global Patient Partnership Leader in MS, who works closely with Antoine. “I’m proud that Roche provides people living with diseases like MS the opportunity to continue to work and I’m grateful for the value they add to our business.”
“Working with Roche has given me a sense of relief because I don’t feel that I have a handicap,” says Antoine. “As a patient expert, I am talking about MS, I am using my brain and I can help people. And that is really important for me. I help people better understand this disease.”
Antoine’s ability to confront his disease with positivity has encouraged us in our work and commitment to improving the lives of those living with MS. When he was first diagnosed, Antoine met with neurologists, physiotherapists and a psychologist to help him with the less visible effects of his disease. “MS is not only linked to physical symptoms,” Antoine says. “You may see I am struggling to walk, losing my balance, struggling with fatigue, but you can’t see my mental state, the fact I forget things more easily. The effects of a disease like MS are multifaceted.”
Like other people with MS, Antoine spent the early part of his journey working with doctors to find a treatment that worked best for him. He learned to self-administer injections – “an act that wasn’t easy for me to accept because it was a frequent injection and a constant reminder that I had MS,” Antoine says. He approaches setbacks and difficult days with positivity. “I have a daughter and I don’t want to show her that Papa is sick, Papa is tired, Papa struggles to do lots of things. So even if I had a bad night, I always greet her with a smile,” he says.
As Antoine adjusted to life with MS, he moved to Basel where his wife, Katie, found work with Roche. He began looking for work, too, and started seeing a new medical team. Recently, however, Antoine and his medical team have begun to suspect that his MS may be evolving to secondary progressive MS, which is characterised by a gradual worsening of symptoms with no definite periods of remission. This worries him because treatment options are limited in this type of MS.
In response to Antoine’s emerging cognitive challenges, his Roche colleagues have implemented strategies to ensure he can track his tasks. When he requires rehabilitation, which can be last-minute and time-intensive, Roche adapts to accommodate his absence. “We always remain flexible as an organisation because his availability changes depending on his health, and his health is always our priority,” says Christine.
To prioritise the aspects of his health he can control, Antoine has recently given up alcohol and changed his diet. “I have a daughter, I have a family, I can still work, I can still do lots of things. So I try to focus now on what I can do and not what I’ve lost.”
Antoine continues to advance Roche’s understanding of life with MS, enabling better patient care. He is a valued colleague who inspires with his commitment to supporting his peers and with his ability to adapt to his changing life. “Readaptation is an important word for me and for all MS patients. Since I’ve had this condition, I’ve been working to readapt myself to the new me.”
Today, Antoine says he has become more comfortable asking for help and has a new perspective on life. “Having MS puts things into perspective; I don’t sweat the small stuff. It changes your way of thinking and your behaviour. It changed my behaviour drastically – for the better I think.”
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