MS patients voice concerns over lack of better MS medical care

Despite major advances in treatments over the last few decades, people living with multiple sclerosis (MS) still face massive gaps in their care – particularly when it comes to managing crushing fatigue, stopping disease progression, and reversing nerve damage. This is according to a new report from the National MS Society.

The Voice of the Patient Report draws on firsthand accounts from hundreds of patients who attended a meeting hosted by the National MS Society and other advocacy groups last October, as well as survey responses from more than 2,800 people living with MS.

The 36-page document highlights an urgent need for better early diagnostic tools, more effective symptom relief, and new ways to restore lost function, backed by hundreds of personal quotes illustrating how the chronic condition shapes daily life.

‘For 80 years, the National MS Society has been working for those affected by multiple sclerosis and their families,’ Tim Coetzee, PhD, the organisation’s CEO and president, said in a press release.

‘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.’

MS is a chronic disorder marked by inflammation that damages myelin, a fatty covering around nerve fibres, in the brain and spinal cord. This damage leads to symptoms such as mobility challenges, bladder issues, extreme fatigue, and difficulties with cognition and mental health.

In MS, symptoms tend to worsen over time. Though most of this progression had been attributed to poor recovery from relapses, it is now well-established that many patients also experience worsening symptoms in the absence of disease flares.

Over the past few decades, the treatment landscape for MS has changed radically. The first disease-modifying treatments (DMTs) for MS were approved in the 1990s , and now, more than 20 DMTs are available, mostly for people with relapsing forms of the disease.

The report underscores that these advances in treatment have been a major win for the MS community. Nonetheless, people with the disease still face many challenges that aren’t adequately addressed with available treatments.

Meeting participants and survey respondents ‘commended the steady progress in expanding treatment options, while also identifying urgent unmet needs for earlier diagnosis, greater symptomatic relief, effective treatment of disease progression, and therapies to repair [myelin damage] and restore lost function,’ the report states.

Even with DMTs, most people with MS will continue to experience some disease progression and symptoms. Some therapies can help ease specific MS symptoms, but patients in the report said there’s still a need for better symptomatic treatments, particularly to manage fatigue, reduce spasticity, improve cognitive function, increase mobility, and address bladder control.

Another major limitation of available DMTs is that, although they can help prevent the disease from worsening, they have little ability to reverse damage that’s already occurred. As such, finding new treatment strategies that can actively repair myelin damage remains a major priority for the MS community. Finding new and better ways to slow disease progression is also highlighted as a key priority.

‘Participants highlighted aspirations for more personalised treatments and management approaches that more fully integrate the array of medications, medical and technology devices, supportive therapies, and lifestyle modifications used to enhance quality of life and extend productive lifespan,’ the report states.

The report also highlights that, with available DMTs, patients often make tough choices to balance the potential risks and benefits of treatment. Many newer DMTs potently suppress the immune system, which means they are generally quite effective at preventing disease activity, but they also carry risks of serious or even life-threatening side effects.

Figuring out which DMT to use involves carefully balancing the risks and benefits of each drug and making ongoing reassessments as patients age and the disease evolves.

There isn’t any one test that can diagnose MS, and patients often have to undergo several medical tests before getting a diagnosis. Because DMTs are most effective when given early, delayed diagnoses can lead directly to worse long-term outcomes for patients.

The report therefore emphasises a need for early, accurate diagnosis as a continued unmet need.

‘These are the unmet needs yet to be addressed that would meaningfully reduce the burden of MS on people’s lives, including care partners of those living with MS,’ Bari Talente, executive vice president for advocacy and healthcare access at the National MS Society, said during the meeting’s concluding remarks.

‘Your voices matter. Your perspectives shape the future. This is how we will advance the Society’s vision of a world free of MS.’

Read more about best ways to manage symptoms with our helpful Choices booklet