Uniting Our Voices in Multiple Myeloma: How We Are Working Together to Accelerate a Cure

Uniting Our Voices in Multiple Myeloma: How We Are Working Together to Accelerate a Cure

While we take time as World Cancer Day approaches to acknowledge great strides in treatment innovation, we must also recognize that high unmet needs remain for many patients. For those living with multiple myeloma, every day matters in driving toward a cure, and each of us has something unique to contribute to this effort.

People with multiple myeloma are living longer than ever before but are burdened with the reality that they will always need additional treatment. Despite the introduction of novel therapies, the complex nature of the disease, coupled with gaps in access, means that I am hearing the stories of far too many patients who continue to suffer the physical and emotional toll of this disease. Cycling through the same stages of hope and grief multiple times can be overwhelming. I’m inspired by the optimism and resolve of these patients, and they fuel my determination every day to strive for a cure. ?

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As we support patients through their journeys, we must do more than conduct studies, as research on its own does not cure cancer. Along with scientific advances, we need to act even more urgently and purposely to ensure the unique value of our medicines is realized. We must fight for the changes that need to occur to expand access to therapeutics and shift away from one-size-fits-all approaches to more customized and targeted strategies to help each patient.

While we innovate toward making multiple myeloma a manageable and ultimately, a curable disease, we must also collaborate with a diverse group of stakeholders to address the significant unmet needs patients face. We must unite to close the gap and bring effective medicines to patients faster, working with patient advocates to help broaden awareness of symptoms and prevention, clinicians to help define successful regimens and regulators to consider novel study approaches and endpoints. At Janssen, we recently kicked off a new effort in which we are engaging a multidisciplinary group committed to multiple myeloma innovation, like us, to determine how we can do just that.

I am committed to doing my part, like so many across our company to close the care gap for all patients, families and caregivers affected by this disease; to continue to spark hope for the future and change their stories for the better, and hopefully, one day include the word “cure.”

Alan Stephenson

Owner at Legacy Wealth Concepts, Multiple Myeloma Cancer Survivor & Consultant, Entrepreneur, Co-Owner of 911 Handyman & Remodeling, All Seasons HVAC, Dirty Ducts Duct Cleaning, Dirty Ducts Chimney Services

11 个月

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Alan Stephenson

Owner at Legacy Wealth Concepts, Multiple Myeloma Cancer Survivor & Consultant, Entrepreneur, Co-Owner of 911 Handyman & Remodeling, All Seasons HVAC, Dirty Ducts Duct Cleaning, Dirty Ducts Chimney Services

11 个月

I was diagnosed with Multiple Myeloma in 2016. It is my passion to help others diagnosed with MM so I have tried to become as engaged as possible. I was a patient ambassador for another pharma company. I run one FB group for Darzalex and in March of this year, I started another group called Multiple Myeloma Warrior Community. We have 5400 members and it is growing quickly. I met with Dr. Fritz van Rhee who is the director of the UAMS Myeloma Center 2 weeks ago and they are getting involved with the group. I also have one other major MM treatment center that is interested and have taken steps to engage with others. I moderated a virtual town hall with Dr. Krina Patel from MD Anderson and we are doing another one on Feb 1st. The idea for the group is to function as a hub to bring the patients, doctors, researchers, non-profits, and other resources together in one place on Facebook. I would be honored if we could get someone from your team involved. I just found out that I am no longer in remission and I have a lesion in the center of my forehead. I told my kids that since I have a hole in my head, I will only answer to the names Holey Father or His Holeyness. I told my siblings they could call me Holey Brother but not A-Hole.

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