August is Spinal Muscular Atrophy (SMA) awareness month (Guest blog)
25.08.20
I’ll never forget it. I was at a Biogen event, sitting in the front row, and my heart was pounding and tears were rolling down my face. It was before I had started working in spinal muscular atrophy (SMA) and the team had screened a short film of patient stories; adults talking about their lives, parents talking about their children. I have four young children myself and my first thought was, this could be me. This could be me and my wife. This could be our child. Fast forward two years later and all of a sudden, I had an opportunity to work on SMA – I didn’t think twice.
Few people know about SMA, and those that do tend to associate it more with children. However adults are affected by SMA too, and it can have a profound impact on their quality of life and wellbeing. Like children, they also deserve opportunities to feel hopeful and to be given a better chance of care.
A lot of adult patients are likely to have gone through a system where it has taken some time to get a diagnosis, and with SMA, earlier intervention can change the course of someone’s life. Over the past few years, it has been our mission to help educate these patients and empower them so they can be identified more quickly, which was also the vision for our disease awareness campaign Together in SMA. Biogen is also collaborating with the SMA community to evaluate how we can raise awareness around SMA to ensure it is on the agenda of government bodies. As a result, we have already seen an improvement in services across Europe. There’s more cohesion across centres that are ready to manage patients, treat patients and provide overall care.
While we have made some progress in health services, there is still more work to be done, particularly around newborn screening for SMA. This is why we are happy to be part of the newborn screening alliance established by SMA Europe working to make this a reality in every single country.
Pharmaceutical companies play a very important role in healthcare and I am extremely proud of the work that we do for SMA patients here at Biogen. We invest in research, develop resources and build strong relationships with stakeholders with the one guiding principle of making people’s lives better. We often receive letters, pictures and stories written by patients and their caregivers that have been sent to faceless people at Biogen, thanking us for the work we do. This is what keeps me going.
As a leader of neuroscience and a leader in SMA, I feel that we have an obligation and responsibility to do everything that we can to address the needs of adults and children with SMA, halting disease progression wherever possible. Through our work, we can give them hope and make a positive difference to these people’s lives. For me, it’s the absolute dream job.
#WeWontRest until every patient and caregiver gets an equal opportunity to care, so that people impacted by SMA can have the best possible quality of life.
