A tribute to my SMA sister and hero, Brianna Albers
How my best friend helped me access SMA treatment from across the world
For the past two years, my best friend and fellow columnist, Brianna Albers, and I held a tradition of collaborating with each other for SMA Awareness Month. We’ve written companion columns about the pros and cons of our respective countries (she lives in the U.S., while I’m based in Singapore) and interviewed each other about internalized ableism and intersectionality in SMA advocacy.
This year, though, we’re breaking our tradition. Because looking back at my past columns, I’ve never properly articulated the immense material impact that meeting Brie had on my life.
As I told her recently, Brie championed me before anyone else did. It’s thanks to her that I have my jobs as a columnist and journalist. Had she not insisted I apply for the columnist opening at SMA News Today or pitch an op-ed to gaming news site PCGamesN, you wouldn’t be reading this column and I wouldn’t have built my writing portfolio. I didn’t have the self-confidence to pursue career opportunities at the time. I needed someone to believe in me, and that someone was Brie.
But perhaps most importantly, Brie is the main reason I’ve been on Evrysdi (risdiplam), a disease-modifying therapy that can stabilize SMA progression, for the past two months. Until now, no one outside of my inner circle has been made aware of the lengths Brie has gone to in helping me secure my treatment.
Sisters bound by SMA: A hero’s origin story
It started with writing columns about my case. Even if her columns didn’t revolve around me or feature me heavily, Brie made sure to mention that I was fighting for access to Evrysdi or link to my story wherever she could.
She still does so. In fact, before she explained her ex-insurance company’s sudden decision to again deny her funding for Evrysdi this year, she opened a column in April by standing in solidarity with me:
“I never thought it would be this difficult to secure a life-altering treatment. This is about my best friend and fellow SMA News Today columnist, Sherry Toh, who is currently crowdfunding for her first year of Evrysdi … treatment. But it’s also, maybe a little surprisingly, about me.”
Beyond her public displays of support, Brie has worked tirelessly behind the scenes to find people and resources that could potentially help. If there was a contact who could provide my battle with visibility, Brie used them, despite my concerns that she would risk her professional standing in the SMA community or even just be seen as exploitative.
It’s those efforts that got me in contact with people at Genentech and its parent company, Roche, who market the drug, so I could make my case known. And when my crowdfunding page went live, she rallied her social media followers and our SMA News Today colleagues to spread the word.
Months later, after noticing the lack of traction for my crowdfund, Roche offered me a three-month supply of Evrysdi.
Brie’s actions took an immense amount of emotional labor and empathy. Not to mention all the times she’s watched me cry, rage, and fall into depressive spells — all while managing her own physical and mental health. Still, she persists. She continues to be like an older sister to me, always standing by me and fighting alongside me or on my behalf. Because of her, I’m less afraid of the cynics and their dragons trying to tear my castles down. She’s my hero.
This can’t be a moment in time, but a movement
One of the biggest lessons I’ve learned in my 20s is that our world runs on connections. Who you know can matter more than who you are or what you can do. That lesson became most apparent when I realized I can trace all of my biggest recent blessings to Brie. We need more people like her in the world — people who use their privilege and positions of power to help others, simply because it’s the right thing to do.
It’s my hope that I’ll be able to pay forward my good fortune. More than that, I hope privileged readers will see this column and be encouraged to help SMA patients beyond the awareness month. Whether it’s being a shoulder to cry on, calling someone who can further the cause, or sharing your struggles in solidarity, there’s so much we have yet to do. There’s a great deal of personal and public history the SMA community has yet to write. We just need a little help.
Note: SMA 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 SMA News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to spinal muscular atrophy.
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Comments
Blake Watson
Love this tribute. There's nothing like having a friend that can understand what you're going through. When I was younger I didn't know anyone with SMA, except for my brother. I didn't realize it at the time, but now I realize how fortunate I was to have someone with SMA to talk to; someone who could understand my plight in a way anyone without SMA could not.