SPINRAZA STORIES/choosing spinraza again

Hundreds of patients have restarted SPINRAZA® (nusinersen) after discontinuing

Meet Nina, a returning SPINRAZA patient

Nina is a crochet connoisseur by day and a rising comedian by night. As somebody who was diagnosed with SMA at a young age, she was eager to try SPINRAZA. After some time off the treatment, Nina and her doctor decided to come back to SPINRAZA.

Like Nina, everybody has their own unique SMA experience.
Hear from Ryan, another person who restarted SPINRAZA.

This reflects Ryan’s personal experience following initial treatment with SPINRAZA.
Each person’s experience may be different. 

RYAN // AGE 21

DISABILITIES ADVOCATE

TREATED WITH SPINRAZA FOR 6+ YEARS

“Making the most of my years at college.”

TRANSCRIPT

RYAN: Hi, my name is Ryan. I’m 21 years old. I’m a fourth year at college, and I live with spinal muscular atrophy Type 2.

Super: THIS MOMENT COMES FROM WITHIN

Ryan//Age 21
LATER-ONSET SMA
[Indication/ISI appear]

I started treatment on SPINRAZA when I was in high school, a senior in high school.

Super: Treated with SPINRAZA for more than 3 years.

I decided on transferring to a university after two years of living at home. I was really eager to kind of get out and live life and see the world. My parents told me that, Ryan, you can do anything. You’re away at college. You can make the most of your two or three years there. So they were a really big support system for me and one I leaned on for guidance. I’ve been living on my own with the help of caregivers. I have a solid caregiver schedule. They’re all great friends, too. So I’ve been doing it for about a year, planning my daily schedule. When do I have caregivers do laundry? When do I cook dinner and lunch? Do all these things that I usually haven’t had to manage in the past. Going to class every single day is kind of the routine that I have. And I’ll travel to campus and go to classes in my wheelchair and be with friends in class and then I’ll maybe grab a bite to eat.

Super: Individual results may vary based on several factors, including severity of disease, initiation of treatment, and duration of therapy.

I actually got involved in our student government. A lot of people came to me and they said, Ryan you would be really great if you ran for president. And I said, what? Like, no way. I ran and got elected so I serve as president and got really heavily involved in terms of disability rights and transfer advocacy as a transfer student.

 

Before I decided on changing treatments, I was on SPINRAZA for about three and a half years. Once I got on the new treatment, I told my doctor exactly what was happening. She was really understanding. She said, Ryan, listen, we can get you switched back.

Super: Individual results may vary based on several factors, including severity of disease, initiation of treatment, and duration of therapy.

I was starting to notice at the time some things that I could do after SPINRAZA, there’s this story that I share about going out to Mexican food with my mom. I kind of got a sense of confidence at that meal. I went to reach for each taco, and I was able to grip the taco and eat it and my mom, her jaw just dropped to the floor. She’s like, did you really just do that? I said yeah absolutely I did, and I was really proud of myself.

 

FEMALE VOICEOVER: Talk to your doctor about the potential risks and benefits before starting SPINRAZA. SPINRAZA is given as an injection into the lower back through a procedure called intrathecal injection, delivering medication directly into the central nervous system. Treatment on SPINRAZA begins with four injections in the first two months as loading doses, followed by a maintenance dose every four months thereafter.

Super: Treatment on SPINRAZA begins with four injections in the first two months as loading doses, followed by a maintenance dose every four months thereafter.

Before starting treatment on SPINRAZA, and before each dose, lab tests are required to monitor for risk of bleeding and kidney damage.

Super: Before starting treatment on SPINRAZA, and before each dose, lab tests are required to monitor for risk of bleeding and kidney damage.

RYAN: You know, I have a lot on my plate these days. I am a full-time college student. I’m involved in student government, working 19 and a half hours a week, maybe more. And I also have a very active social life in terms of just hanging out with friends and going to dinners. You know, of course I leave a little bit of room for studying, too. I realize that a lot of people’s experiences are different, so I’m grateful to be on a treatment that works for me. And for me, that’s SPINRAZA.

Super: Individual results may vary based on several factors, including severity of disease, initiation of treatment, and duration of therapy.

Super: THIS MOMENT COMES FROM WITHIN

This is Ryan’s moment.
What is yours?

[ISI present in video and available below.]

Super: ©2022 Biogen. All rights reserved. 09/22 SPZ-US-4922 225 Binney Street, Cambridge, MA 02142

Considering a treatment change?

Every now and then it’s important to check in with yourself and ask essential questions about how things are going with your SMA. It may provide a clearer picture about your treatment and if you are reaching your goals. 

If things don’t feel right, make sure to raise any concerns with your doctor. Although it may seem intimidating, at the end of the day, you know your body best—you are your best advocate. And your doctor will always appreciate transparency. The more they know about what you're experiencing, the better they can manage your treatment—including seeing if getting back to SPINRAZA is right for you.

Watch the following video to see why some physicians have chosen SPINRAZA again for their patients.

Transcript

Speaker: Voiceover

WHAT IS SPINRAZA?

SPINRAZA® (nusinersen) is a prescription medicine used to treat spinal muscular atrophy (SMA) in pediatric and adult patients.

SELECTED IMPORTANT SAFETY INFORMATION

A healthcare provider will monitor for signs of bleeding complications and kidney damage while taking SPINRAZA. These are not all the possible side effects.

Please continue watching for additional Important Safety Information.

SUPER:

WHAT IS SPINRAZA?

SPINRAZA® (nusinersen) is a prescription medicine used to treat spinal muscular atrophy (SMA) in pediatric and adult patients.

SELECTED IMPORTANT SAFETY INFORMATION

A healthcare provider will monitor for signs of bleeding complications and kidney damage while taking SPINRAZA. These are not all the possible side effects.

Please continue watching for additional Important Safety Information.

BACKGROUND MUSIC

SUPER: Hundreds of patients with spinal muscular atrophy (SMA) have returned to SPINRAZA.

This is sponsored by Biogen. Speakers are being compensated by Biogen for their time spent delivering this presentation.

SMA, spinal muscular atrophy.

NASSIM RAD, MD:

Patients come back to SPINRAZA because of their own preferences and goals. I am currently treating 47 adult patients with SMA. I have patients who have started and stayed on SPINRAZA because it fits with their goals. Some of my patients have restarted SPINRAZA.

SUPER: Nassim Rad, MD
Director, SMA Multidisciplinary Care
University of Washington Medical Center

Individual results may vary based on several factors, including severity of disease, initiation of treatment, and duration of treatment.

BACKGROUND MUSIC

SUPER: Talk to your doctor about your treatment goals.

CRYSTAL PROUD, MD:

The communication strategy often involves addressing patient concerns, emphasizing the importance of treatment, and fostering an informed decision-making process to ensure patients feel informed and involved in their care.

SUPER: Crystal Proud, MD
Pediatric Neuromuscular Neurologist
Children’s Specialty Group and
Children’s Hospital of The King’s Daughters

BACKGROUND MUSIC

SUPER: Reinitiating SPINRAZA

NASSIM RAD, MD:

When patients are on SPINRAZA or when they restart SPINRAZA, we like to monitor for safety, as well as monitor motor function and range of motion, looking for either gains or losses of functional ability.2

 

CRYSTAL PROUD, MD:

It’s important to reestablish a baseline functional assessment, and I reassess my patients every 6 months so that we can discuss the impact of their treatment on their motor function.2

Super:

SPINRAZA (12 mg) clinical studies included

BACKGROUND MUSIC

SUPER: Talk to your doctor to see if getting back to SPINRAZA is right for you

VOICEOVER:

WHAT IS SPINRAZA?

SPINRAZA® (nusinersen) is a prescription medicine used to treat spinal muscular atrophy (SMA) in pediatric and adult patients.

IMPORTANT SAFETY INFORMATION

Increased risk of bleeding complications has been observed after administration of similar medicines. Your healthcare provider should perform blood tests before you start treatment with SPINRAZA and before each dose to monitor for signs of these risks. Seek medical attention if unexpected bleeding occurs.

Increased risk of kidney damage, including potentially fatal acute inflammation of the kidney, has been observed after administration of similar medicines. Your healthcare provider should perform urine testing before you start treatment with SPINRAZA and before each dose to monitor for signs of this risk.

The most common side effects of SPINRAZA include lower respiratory infection, fever, constipation, headache, vomiting, back pain and post-lumbar puncture syndrome.

Before taking SPINRAZA, tell your healthcare provider if you are pregnant or plan to become pregnant.

Please see full Prescribing Information via the link provided.

This information is not intended to replace discussions with your healthcare provider.

SUPER: Talk to your doctor to see if getting back to SPINRAZA is right for you

WHAT IS SPINRAZA?

SPINRAZA® (nusinersen) is a prescription medicine used to treat spinal muscular atrophy (SMA) in pediatric and adult patients.

IMPORTANT SAFETY INFORMATION

Increased risk of bleeding complications has been observed after administration of similar medicines. Your healthcare provider should perform blood tests before you start treatment with SPINRAZA and before each dose to monitor for signs of these risks. Seek medical attention if unexpected bleeding occurs.

Increased risk of kidney damage, including potentially fatal acute inflammation of the kidney, has been observed after administration of similar medicines. Your healthcare provider should perform urine testing before you start treatment with SPINRAZA and before each dose to monitor for signs of this risk.

The most common side effects of SPINRAZA include lower respiratory infection, fever, constipation, headache, vomiting, back pain and post-lumbar puncture syndrome.

Before taking SPINRAZA, tell your healthcare provider if you are pregnant or plan to become pregnant.

Please see full Prescribing Information via the link provided.

This information is not intended to replace discussions with your healthcare provider.

References: 1. Biogen. Data on Files as of 1/24.

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SPZ-US-6145 06/25
225 Binney Street, Cambridge, MA 02142

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A guide to getting started

Step 1:

Check out the SMA Treatment Discussion Guide and work with your healthcare provider to determine whether SPINRAZA is right for you.

View the guide
Step 2:

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Step 3:

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