California Forum

My condition was untreatable. Then came a miracle drug, and a miraculous community

Sutter Medical Center Sacramento, shown here, is among the local institutions thanked by the author, whose condition, spinal muscular atrophy, was once considered untreatable.
Sutter Medical Center Sacramento, shown here, is among the local institutions thanked by the author, whose condition, spinal muscular atrophy, was once considered untreatable. apayne@sacbee.com

At first glance, I may not appear to have much reason to be thankful for my health, but the truth is I have been extremely fortunate throughout my life.

Not only has my family provided me with excellent care, but I have also benefited tremendously from the Sacramento medical community. This year in particular has embodied the very best of our region’s health care system, and as a lifelong Northern Californian, it feels like the right time to say thank you.

When there is a group of people who are motivated by a genuine desire to have a positive impact on someone’s life, the seemingly impossible suddenly becomes conceivable and then even achievable.

I was born with a condition called spinal muscular atrophy. It is a progressive, neuromuscular disease that affects the muscles throughout my body. I have used a wheelchair all of my life, and as I’ve gotten older, I have needed more and more supports to meet life’s most basic needs.

When I was 14, the muscles necessary for me to chew and swallow became very weak. After months of high-calorie shakes and sometimes even straight Häagen-Dazs, my parents drove me to Sutter Memorial Hospital where I had a stomach tube placed. That small, plastic device has quite literally kept me alive for more than 20 years.

A few years ago, my chest muscle lost the strength to fully expand my lungs. I exhausted every noninvasive therapy, and then it was time to head back to Sutter Memorial. I was taken into an operating room where a direct airway called a tracheotomy was placed in my neck. I could breathe easy yet again.

All of these medical challenges are the result of missing a single gene that is essential for proper muscle function. When I was diagnosed, the doctors told my parents we would never see a treatment to address the genetic underpinnings of this disease.

However, a lot can happen in more than three decades, and late last year the FDA approved the first-ever treatment for spinal muscular atrophy. It was an amazing achievement.

And then Sutter came through once again. The medication is extremely expensive, and in certain cases like mine, it can be very difficult to administer.

Yet when there is a group of people who are motivated by a genuine desire to have a positive impact on someone’s life, the seemingly impossible suddenly becomes conceivable and then even achievable. In November, I became the first adult in the region to receive this groundbreaking treatment at a Sacramento hospital.

This most recent medical success would have never occurred without the efforts of Dr. Bradley Chipps, Dr. Shailesh Asaikar, Dr. Lotfi Hacein-Bey, Dr. Robert Moynihan, their nurses, support staff, and nameless other administrators who were all up for the challenge.

It takes excellent people to create excellent outcomes, and to each of them I express my immense gratitude.

David Bekhour is a graduate of the UC Davis School of Law. Reach him at @OptimisticGrin.

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