Yalie with disability ‘just astonishing’
New drug treats her rare genetic disease
NEW HAVEN — For Arya Singh, a junior at Yale University, the weakness in her muscles is a challenge, not a barrier.
President of the Yale Undergraduate Legal Aid Association, an undergraduate teaching assistant in professor Howard Forman’s “Health Economics and Public Policy” class and a member of the New Haven Commission on Disabilities, she is making her mark on Yale and the city.
She has even written a children’s book, “Courageous Calla and the Clinical Trial,” based on her experience helping to develop three drugs.
Singh, 20, has had spinal muscular atrophy her whole life. She has used a wheelchair since she was 5. She will tell you she requires “extreme dependency on friends and family for tasks of daily living that most people would not think about.” Just raising her hand in class takes effort.
Now that she is on Evrysdi, a drug recently approved by the Food and Drug Administration, she no longer will have to undergo a lumbar puncture, in the operating room under anesthesia, in order to receive medication that keeps her muscles from weakening further.
“I’m a full-time student but I also have three hours of physical therapy every day,” she said. “I’ve been in the operating room over 20 times my entire life. I’ve been in clinical research as long as I can remember.”
Those clinical trials have kept Singh’s condition somewhat stable for years, but they have not been without pain and risk. Spinraza, which must be injected into the spine, was one of the three clinical trials in which she has taken part. While it helped keep her somewhat stable, it was “incredibly invasive” to receive, she said.
“A lumbar puncture is a really dangerous procedure in that you can have leakage of spinal fluid,” she said. “That happened to me and I was out of school for three weeks on and off for the rest of the year, because a side effect of that is you get these incredible headaches. … You have to lie down in order for that to stop.”
Evrysdi (Genentech’s trade name for risdiplam) differs from Spinraza both in how it’s administered and in its effects.
“What’s important about this drug is that it delivers this protein all over the body instead of just the central nervous system, and I think for most SMA patients they would say that what they notice is the fact their muscles are getting weaker. You don’t really notice loss of nerve function,” Singh said.
“What I have said time and time again is that I’m so grateful that I was part of that trial,” Singh said of Spinraza. “I think that drug is lifesaving.” Evrysdi, though, “achieves more than I think Spinraza did for me in a way that is less scary, less invasive and less dangerous.”
Evrysdi “doesn’t disrupt my daily life and that is hugely beneficial to anyone, but especially someone who’s a college student,” Singh said. “It improved my quality of life in an unparalleled way.”
“I think she’s figured out a way to take things that might be impossible and turn them into the possible,” Eng said. “She really has that grit. … She really has the tenacity to make a happy day out of every day.”