MS Patients Capture the Ear of a Pharma Company
People with multiple sclerosis (MS) rarely get the opportunity to talk to the people who design their medications. But a new collaboration is providing that opportunity to a few of us.
The Accelerated Cure Project for Multiple Sclerosis (ACP) and pharmaceutical manufacturer EMD Serono have begun working together to include patient perspectives as the pharma company develops and evaluates new MS medications.
For the past few years, ACP has produced an online research survey known as iConquerMS. Patients share information about their MS symptoms and experiences with researchers. They also suggest questions for researchers to investigate. From the group of more than 4,600 people with MS who’ve participated in the iConquerMS surveys, eight have been selected to serve on what they’re calling a Patient-Focused Drug Development (PFDD) initiative. (More patients may be added to this small group later.)
The PFDD recently had its first meeting with the EMD people and provided input on a clinical trial that’s in the late stages of being drafted. Accelerated Cure Project COO Sara Loud tells me that specific input was being sought “regarding what’s of interest to people living with MS.” Loud says the patient group will continue to work with EMD for about a year, until the clinical trial begins.
“Those of us living with multiple sclerosis have the most valuable understanding of what matters most when it comes to treatment of this condition,” says iConquerMS’ co-principal investigator and lead patient representative Laura Kolaczkowski, who also is a fellow columnist here at Multiple Sclerosis News Today. “The collaboration between the iConquerMS initiative and EMD Serono is an important opportunity for our collective voices and insights to be heard and to drive real progress in research, drug development, and ultimately in the fight against MS.”
It’s a slow process
Where are things headed?
Sara Loud wrote to me that, “It’s clear that there is a great need and interest with EMD Serono in particular and industry at large to include the perspectives of people living with MS in their work.”
She’s right about her first observation. There is a great need. But I’d like to see pharma companies show a lot more interest.
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Note: Multiple Sclerosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Multiple Sclerosis News Today or its parent company, Bionews Services, and are intended to spark discussion about issues pertaining to multiple sclerosis.
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Comments
Peggy
I agree with you id like to see pharma companies showing ALOT MORE INTEREST
Jason
Gilenya cost 62 grand 5 years ago and now they charge 98 grand per year. Look it up. I wonder what happened.
Laura Kolaczkowski
We are especially proud of this groundbreaking initiative. The FDA is holding hearings this fall on how Patient Focused Drug Development will be incorporated into future clinical trial requirements and we are already ahead. IConquerMS and ACP, through its REAL MS longitudinal surveys has already captured patient reported outcomes (PROs) that are informing our understanding of life with MS from the perspective of people who live with this disease. This PFDD with EMD Serono is a natural next step for our research. Thanks for sharing this news with your readers. We invite everyone to join us at www.iconquerms.org and add their voice to the research. Best, Laura
Ed Tobias
You and ACP/IConquerMS group are doing great work, Laura. I'm always pleased to share news about your efforts. And, BTW, I enjoy taking the surveys. :-)
Colette Jenkins
I am extremely impressed with the move of pharmaceutical company interest activity driven focus on the patients experience. I believe it could be beneficial in the outcome of future treatment opportunities for neurologist to choose. I am an African American woman with an MS dx in 1996. Remembering the exhausting process to be diagnosed because it was believed MS did not exist in African Americans. Today, studies reveal the opposite, additionally MS is more progressive in us. I'd love to participate in studies focused on African American patients and how a drug responds in each ethnicity. Overall, I m excited to see the advancements in 20 years, but, could be better. Thank you for what you do.