One of the most common and deeply felt frustrations in the MS community is that most treatments are focused on people with relapsing-remitting MS (RRMS), while those living with secondary progressive MS (SPMS) often feel left behind.
It’s understandable to feel disappointed, angry, or even hopeless when you hear that a treatment isn’t available for your stage of MS. You’re not imagining this gap, it’s real, and is an area of focus for researchers who are stiving to better understand and find high efficacy treatments for SPMS.
Understanding RRMS, SPMS, and PPMS.
There are different types of multiple sclerosis and understanding how they relate helps explain why treatment options differ.
- Relapsing-Remitting MS (RRMS) is the most common form at diagnosis. It’s defined by relapses (episodes of new or worsening symptoms) followed by remission (periods of recovery or stability). Most of the current MS treatments were developed for this type because relapses are relatively easy to track and respond well to anti-inflammatory therapies.
- Secondary Progressive MS (SPMS) often follows RRMS. Over time, typically after 10 to 20 years a proportion of people with RRMS transition into SPMS. In this stage, relapses become less frequent or stop, but disability gradually worsens. The underlying disease process shifts from primarily inflammatory to progressive neurodegeneration, which current treatments don’t target as effectively.
- Primary Progressive MS (PPMS) is progressive from the beginning. People with PPMS often never experience relapses. Instead, the disease gradually worsens over time from onset. PPMS shares some characteristics with SPMS, especially in terms of steady progression, but it is considered a separate diagnosis.
In short:
- RRMS can lead to SPMS.
- SPMS and PPMS both involve progression but start differently.
- Treatments that work for RRMS may not work, or may work differently, for SPMS or PPMS especially when there’s no ongoing inflammation.
This distinction is a key reason why people with progressive forms of MS often face more limited treatment options and why new therapies need to be tailored to these different disease mechanisms.
Why Have Treatments Focused on Relapsing MS?
Most MS therapies today are disease-modifying treatments (DMTs) designed to reduce inflammation, relapses, and new MRI lesions. Most clinical trials historically focused on RRMS with the primary goal of preventing relapses and in turn reducing disability and progression. That focus created a pipeline of treatments for relapsing MS but left a gap for those whose disease had progressed.
In SPMS, inflammation tends to play a smaller role, and instead the disease causes gradual nerve and axonal damage. This kind of damage is harder to target or reverse with current therapies, which were developed primarily to control inflammation.
The Research Challenges
Developing treatments for SPMS is more complicated, mostly due to:
- Trial design: In RRMS, effectiveness can be measured by a drop in relapses. In SPMS, where the disease worsens slowly, researchers must track changes in disability over many years—making trials longer and more expensive.
- Biological complexity: SPMS involves not just inflammation, but also neurodegeneration. Future treatments need to focus on nerve protection, remyelination, and repair, which are still emerging fields in MS research.
Active vs. Non-Active SPMS: A Frustrating Divide
Overseas, DMTs such as siponimod (Mayzent) and ocrelizumab (Ocrevus), are specifically approved for active SPMS, meaning those who still experience relapses or new MRI lesions. Studies have shown they can help slow down disease and disability worsening, primarily in those with “active” SPMS. In New Zealand, Siponimod, while Medsafe approved is not yet funded by Pharmac.
In New Zealand, to start MS treatments, clinical evidence is required of one or more relapses in the last 12 –24 months, or inflammatory activity on MRI. This means that many people with “active” SPMS who are still experiencing inflammatory activity are in fact accessing funded treatment. This highlights why it is important to report all new or worsening symptoms to your neurology team, ensuring that a clinical assessment can be made.
But for those with non-active SPMS (slow worsening without relapses), access to treatment remains much more limited. If you’re clearly getting worse, but don’t meet the criteria for “active” disease, you may be told you don’t qualify for therapy. This distinction can feel unfair, particularly as the access criteria is heavily focussed on mobility, and ignores other meaningful aspects of improving cognitive functioning and fatigue.
The Importance of Risk vs. Benefit: Treatments Must Be Fit for Purpose
As newer therapies are explored for SPMS, one critical consideration is often overlooked: just because a treatment exists doesn’t mean it’s the right fit.
Some DMTs carry serious risks, including immune suppression, infection, or other long-term complications. In people with non-active SPMS where inflammation is low and progression is driven by neurodegeneration these treatments may offer minimal benefit, if any at all.
That’s why it’s essential for people with SPMS and their care teams to have open, individualized conversations about whether the potential benefits truly outweigh the risks. Taking a powerful drug with little expected gain isn’t just ineffective it can be harmful. Treatments for SPMS must be fit for purpose, meaning they are designed or chosen specifically for the biology and realities of progressive MS.
Signs of Progress
While the journey has been slow and frustrating, the landscape is beginning to change:
- Specific international research programmes are funding advancements in knowledge about progressive MS: International Progressive MS Alliance
- More inclusive trials are now enrolling people with progressive MS targeting underlying progression, even without recent relapses.
- Neuroprotective research is gaining momentum, aiming to prevent further nerve damage and even promote repair.
- Patient advocacy is stronger than ever. The voices of people with progressive MS are pushing for change in research funding, trial design, and policy.
What You Can Do Right Now
Even if disease-modifying therapies are limited for your type of SPMS, that doesn’t mean you’re out of options. Here’s what can make a difference today:
- Symptom management: Medications, rehabilitation, and lifestyle strategies can significantly improve symptoms like spasticity, fatigue, pain, or bladder issues.
- Rehabilitation and exercise: Strong evidence shows that exercise, physiotherapy, occupational therapy, and consistent movement help maintain function, independence, and quality of life.
- Stay engaged with your care team: New clinical trials and therapies are emerging. Regular check-ins can help you stay eligible and informed about evolving options.
- Seek community: Connecting with others through MS societies or online groups can offer support.
- Engage in advocacy: Stay informed, participate in advocacy and amplify the collective voice in pushing for change by sharing your story.
Moving Forward, Together
Treatment options for SPMS remain more limited than for RRMS and it’s completely valid to feel frustrated by that reality. But it’s not the end of the story.
Research is catching up to the needs of people with progressive MS, the medical community is listening.
At MSNZ, we hear you! We want people living with SPMS to remain visible and be involved in the conversations about the future direction of MS care.
While we wait for treatments that slow or stop progression, we must ensure that therapies offered today are truly worth taking. You deserve care that’s thoughtful, evidence-based, and designed for your stage of MS, not just repurposed from RRMS strategies.
And in the meantime, there’s still room to improve quality of life, function, and resilience. You are not forgotten. You are not without options. And you are not alone.
Speak to your MS Community Advisor for further information and support here.