A new report has highlighted urgent gaps in MS diagnosis, symptom relief and treatment of disease progression.
The Voice of the Patient report draws on nearly 3,000 survey responses and direct testimony from people affected by multiple sclerosis.
Multiple sclerosis, or MS, is a long-term condition affecting the brain and spinal cord. It can cause fatigue, mobility problems, cognitive changes, vision issues and other symptoms.
Dr Tim Coetzee, president and chief executive of the National MS Society, said: “For 80 years, the National MS Society has been working for the 1m Americans affected by multiple sclerosis and their families.
“The science behind MS might happen in labs, but the truth about this illness, what it takes away from people, what they need most, and where our research still falls short, exists in the experiences of the individuals who wake up with it every day.
“We hope that this report helps elevate their voice to help to shape future treatments and ongoing research.”
The report was developed through the Shaping Tomorrow Together externally-led patient-focused drug development initiative, led by the National MS Society alongside the Accelerated Cure Project and partner MS organisations.
The initiative ran in parallel with the US Food and Drug Administration’s patient-focused drug development programme.
Patient-focused drug development is an approach designed to ensure the experiences and priorities of people living with a condition help shape future treatments.
The report includes feedback from people who attended a meeting in person or virtually, as well as 2,892 individuals and care partners who took part in a survey.
It highlights the real-world impact of MS, the challenges linked to current treatments and priorities for future research and innovation.
Survey respondents ranked fatigue, walking, spasticity, cognitive function and bladder control as the five symptoms they most wanted better treatments for.
Spasticity means muscle stiffness or spasms, which can affect movement and daily activities.
The report also found that 42 per cent of survey respondents had experienced worsening of existing MS symptoms in the past year that was unrelated to a relapse.
A relapse is a flare-up of symptoms caused by new inflammation in the brain or spinal cord.
The survey found 65 per cent of respondents had stopped at least one disease-modifying therapy.
The most common reasons were worsening MS, intolerable side effects or a doctor’s recommendation to stop treatment.
Disease-modifying therapies, or DMTs, are medicines used to reduce MS activity and slow the build-up of disability in some people.
Participants identified unmet needs including earlier diagnosis, better symptom relief, effective treatment of disease progression and therapies to repair demyelination and restore lost function.
Demyelination means damage to myelin, the protective coating around nerves that helps messages travel between the brain and body.
The report said participants wanted more personalised treatment and management approaches to improve quality of life and extend productive lifespan.
Five themes were highlighted throughout the report.
These included delays between disease onset and diagnosis, differing symptom patterns and levels of severity, and complex decisions about DMTs.
The report also found that treatment decisions can shift across life stages, while progression can occur with or without relapses, even in people considered to be well managed.
There is currently no cure for MS, and symptoms vary from person to person.
The National MS Society said early diagnosis and treatment are critical to minimising disability.
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