Cost of treatment

My friend Liz flew in from Texas for a long weekend here in Toronto, and together we crossed something special off our lists: seeing one of our favorite bands live in concert. It wasn’t just a reunion, but a reminder of how music, friendship, and shared experiences can bring light…

Ultomiris (ravulizumab), an approved infusion therapy for adults with neuromyelitis optica spectrum disorder (NMOSD), is closer to being eligible for reimbursement under public drug plans in Canada, according to its developer, Alexion, AstraZeneca Rare Disease. The company signed a letter of intent with the pan-Canadian Pharmaceutical Alliance (pCPA).

Rituximab and mycophenolate mofetil (MMF) may be the most effective off-label options for neuromyelitis optica spectrum disorder (NMOSD) patients who are unable to access approved therapies, often due to high costs or limited availability, according to a study in China. The study compared the safety and efficacy of four immunosuppressive…

Nearly all neuroimmunologists treating patients with neuromyelitis optica spectrum disorder (NMOSD) who test positive for anti-AQP4 antibodies have prescribed one of the three currently approved therapies: Soliris (eculizumab), Uplizna (inebilizumab-cdon), and Enspryng (satralizumab-mwge). These are the findings of a U.S. survey that also found most responding…

AstraZeneca has announced filing a legal challenge to certain aspects of the U.S. Inflation Reduction Act (IRA), arguing that there may be unintended but harmful consequences for people living with rare diseases such as neuromyelitis optica spectrum disorder (NMOSD). It joins a number of other pharmaceutical companies…

Living in a big city like Denver has always had its perks. My office downtown is but a 10-minute drive from home, our food scene is incredible, and the city is diverse and always growing. And one of the biggest blessings of living in Denver is having good access…

Being diagnosed with a rare illness such as neuromyelitis optica (NMO) can be devastating, affecting everything from day-to-day life to relationships, work, and finances. When my youngest daughter, Bella, was diagnosed with NMO in 2017 at the age of 9, she spent six weeks in the hospital, and…

It’s been nearly a year since the EveryLife Foundation for Rare Diseases released its expansive report finding the total economic burden of rare disorders in the U.S. to be nearly $1 trillion.

People with neuromyelitis optica spectrum disorder (NMOSD) experience a high prevalence of co-existing conditions, or comorbidities, which are associated with much higher healthcare costs, a claims analysis demonstrated. In particular, pharmacy costs for NMOSD patients with any comorbidity were “significantly higher” than for those with no co-existing conditions: a…

For the first 10 years after I was diagnosed with neuromyelitis optica (NMO), I chose to keep my condition private because I worried about how others might perceive me. But over the past two years of the pandemic, I’ve made the conscious decision to own my truth. I’ve been…