More than 400,000 Americans are living with multiple sclerosis, and for every single MS patient, it can take years to find the right treatment.
The patient’s journey got a little bit easier this spring, when the U.S. Food and Drug Administration approved a new treatment for patients living with relapsing multiple sclerosis.
As Multiple Sclerosis News Today reports, the FDA’s decision was based on an international clinical trial that was the “largest-ever conducted study in a very typical SPMS population.”
“What was found, and I think quite clearly found in a large-size study, was that siponimod in patients with secondary progressive MS clearly slowed the progression of clinical disability over the course of the trial,” said Dr. Robert Fox, a neurologist at the Mellen Center for Multiple Sclerosis at the Cleveland Clinic.
MS Requires Ongoing Research, New Treatments
An unpredictable autoimmune disorder, MS “destroys” the insulation that protects the nerves and spinal cord. MS symptoms affect every patient in a different way. Many patients suffer from severe pain, fatigue and loss of muscle control.
“It’s so different according to people,” author and patient advocate Jamie Tripp Utitus said at a patient education event, hosted by Patients Rising. “My sister has MS. Her MS is completely different than mine.”
Although every patient lives with unique symptoms, all patients benefit from investments in research and advancements in treatments. However, MS innovation is now being threatened by the Institute for Clinical and Economic Review.
With the backing of multi-billion-dollar insurance companies, ICER is conducting an analysis of a treatment of secondary progressive multiple sclerosis. Both insurance companies and pharmacy benefit managers routinely use ICER’s reports to deny patients access to the treatments prescribed by their doctor.
ICER to MS Patients: You’re Worth Less Than Healthy People
When ICER conducts its economic analyses, it treats patients as a number and assigns each patient a value. ICER’s formula determines your value. If you’re living with MS, according to ICER, you’re automatically worth less than anyone else.
Worth less? Just try telling that to inspirational MS patient advocates, like Marques Jones. As Chair of the Government Relations Advisory Committee for the Virginia Chapter of the National Multiple Sclerosis Society, he hasn’t been sidelined by his diagnosis.
“We need research to put a stop to this disease once and for all,” patient Marques Jones of Virginia shared earlier this year in an interview with Patients Rising. “We need to develop solutions for the daily challenges it presents and we need access to those solutions. All the hard work I’ve done to get control over this disease, to start my own business and keep living my life to the fullest would be at risk if I didn’t have access to healthcare. I had to be persistent.”
Patients Rising Now: Fighting for MS Patients
Patients Rising Now, which advocates on behalf of patients with life-threatening conditions and chronic diseases, is urging ICER to consider the value of MS patients.
The national patient advocacy non-profit, which battles denials and other barriers to access, reminds ICER that patients with MS have a greater opportunity to benefit from newer treatments that may be developed in their life after they have been diagnosed.
Patients Rising Now is also issuing a call to action for patient living with multiple sclerosis.
“If you or a loved one are living with Multiple Sclerosis, ICER’s decisions could have a big impact on your life,” says Terry Wilcox, co-founder and executive director at Patients Rising NOW. “Patients living with MS deserve access to the treatment prescribed by their doctor – not whatever is cheapest for insurance companies.”
Take Action: 4 Ways We Can Fight for MS Patients
1. Watch Patients Rising University: Living with Multiple Sclerosis: Check out the video from our Patients Rising University event, which examined the latest innovation in MS treatments, exposed the common barriers to accessing treatments, and provided patients with a forum to voice their ideas.
2. Share Your MS Story: Are you living with MS? We are encouraging all patients to share your stories with Patients Rising NOW by clicking here.
3. Post on Social Media: Patients can make their voices heard about the importance of access by using the hashtag: #ICERWatch.
4. Support Patients Rising Now’s Message: ICER will host a meeting on multiple sclerosis treatments on May 23, 2019 in Rosemont, Illinois. Join Patients Rising Now in sharing its message:
MS patients are not a number. MS patients should have the same right to access treatments as anyone else.
The value of hope is an important consideration for evaluating new treatments that may have incremental benefits in slowing progression of diseases such as MS where the expectation for future treatments may be categorized as slowing disease progression, stopping disease progression, and reversing disease progression.