The National Multiple Sclerosis Society has been undergoing a leadership change with the retirement of our previous CEO and the appointment of our new CEO (Congrats, Tim!). The new CEO will build on the immense progress made in understanding multiple sclerosis (MS), including its potential links to Epstein-Barr. The confluence of these has caused me to contemplate what the future of the mission to cure MS means. That term, “Cure MS,” is one we have only recently begun to dare speak.
I believe we are in a new era of both excitement and challenge. We are at a critical juncture in the fight against MS, with promising advancements on the horizon and potential pitfalls to navigate.
But let us begin with understanding what curing MS means because it is complicated and not something most people consider.
The Three-Pronged Approach to Curing MS
Defining a cure for MS is complex and multifaceted, encompassing three critical phases:
- Prevention of new MS cases
- Halting the progression of existing MS cases
- Remyelination and repair of existing damage
Current research and trials suggest that we may be on the brink of major breakthroughs in the first two areas. Prevention of new MS cases could be achievable within 5-7 years, thanks to discoveries around the Epstein-Barr virus and molecular mimicry, which may lead to the development of a vaccine. Similarly, significant progress is being made in halting MS progression, with a potential timeline of 7-12 years to stop its advance completely. Halting progress is more than just ceasing the change or increase in lesions. It is the potential restoration of normal brain metabolic function.
The Double-Edged Sword of Success (aka The Law of Unintended Consequences)
While these advancements are undoubtedly cause for celebration, they also present a potential dilemma. As we move closer to preventing new cases and halting progression, we run the risk of losing momentum in the pursuit of full remyelination and repair. This scenario is not without precedent. History rarely repeats itself, but human behavior almost always does.
The law of unintended consequences refers to the idea that actions or decisions can have unforeseen and unintended consequences, often in ways that are not immediately apparent. This can occur because complex systems often have multiple interconnected parts, and a change in one part of the system can have ripple effects that are difficult to predict.
Consider the case of polio, a disease largely forgotten due to successful prevention efforts. Paul Alexander, the second-to-last person living in an iron lung, contracted polio in 1952 and passed away in March 2024. While polio was effectively prevented for future generations, the pursuit of a full cure and repair for those already affected lagged behind. The disease effectively burned out.
Similarly, the cystic fibrosis community is experiencing a shift in focus with the advent of Trikafta, a treatment effective for up to 92% of the population with the ΔF508 gene. As the immediate needs of the majority are addressed, there is a risk of diminished urgency for those still with nonsensical genetic variants who require more comprehensive solutions.
The success in prevention and halting progression may lead to a reduction in MS cases and a shrinking MS population. While this is undoubtedly a positive outcome, it presents a challenge for ongoing research and treatment efforts. With fewer people directly affected by MS, there may be a decrease in fundraising and public attention, potentially leaving those who still need reparative treatments without adequate support.
We risk turning off the lights too soon due to lack of funding and commitment.
Welcome to the Law of Unintended Consequences at play.
A Personal Perspective
For those living with MS, the prospect of prevention and halted progression is immensely encouraging. Personally, if my lesions are never repaired, I can accept this outcome, knowing that my children and all future generations will be spared from walking this path. Many would gladly accept the same. The dream is for MS to become a distant memory, much like smallpox and polio are for current generations.
My primary concern is for the younger individuals already suffering from progressive forms of MS. We must not forget those already suffering from progressive forms of MS, particularly younger individuals who may face a lifetime of disability without reparative treatments. It is crucial that we maintain our commitment to all aspects of MS research and treatment, even as we celebrate our successes in prevention and progression halt.
A Message of Hope and Caution
Despite these concerns, there is reason for optimism. Unlike historical approaches, the MS research community is tackling prevention, progression halt, and remyelination concurrently. We are thankfully not alone in pursuing remyelination, with research also benefiting conditions like neuromyelitis optica (NMO), leukodystrophies, and chronic inflammatory demyelinating polyneuropathy (CIDP).
Our new CEO of the National MS Society has the potential to lead the team that will achieve our ultimate goal: curing MS. I know they will be vigilant in ensuring that all aspects of the cure – including repair – receive continued attention and funding.
The Path Forward
As we enter this new era in MS research and treatment, the MS community faces unprecedented opportunities and significant challenges. By maintaining a balanced approach that addresses all aspects of MS – prevention, progression halt, and repair – we can work towards a truly comprehensive cure.
The goal is clear: a world free of MS. But let us ensure that this vision includes not just preventing new cases but also providing hope and solutions for those already living with the effects of this disease. Only then can we say we have truly conquered MS.