9 Commonly Asked Questions About Spinraza

Spinraza (Nusinersen) was approved by the FDA in December 2016 for the treatment of children and adults with spinal muscular atrophy (SMA). It’s had the SMA community buzzing the world over, but as the drug becomes available in more countries, there are some common questions that keep coming up.

According to Cure SMA here are some of the most frequently asked questions about Spinraza:

When will Spinraza be available?
Spinraza is available in the U.S. and many countries worldwide. You’ll need to check with your doctor to see if it’s available in your area.

Will my insurance cover the treatment?
This will depend on individual insurance policies. However, the manufacturer of the drug, Biogen, has a support system in place to help assist with insurance matters regarding Spinraza.

MORE: Child with SMA dismissed as a “lazy baby” now thriving on Spinraza.

Will I be eligible for a financial assistance program?
Biogen can offer advice regarding financial assistance by contacting an SMA support coordinator at 1-844- 4SPINRAZA (1-844-477-4672).

Is Spinraza a weight-based medication?
No, the price of Spinraza is not based on a person’s weight.

How much does Spinraza cost?
According to biospace.com the price for Spinraza in the U.S. is $750,000 for the first year,  which includes six injections. The price will then drop to $375,000 for subsequent years.

MORE: Watch Cure SMA’s webinar about the FDA approval of Spinraza.

What happens to patients who were in clinical trials for Spinraza?
Patients who participated in either NURTURE or EMBRACE will continue in the trial and receive Spinraza. SMA patients on other trials will be transferred to SHINE and receive Spinraza with continued monitoring.

What will happen to the expanded access program?
Now that Spinraza has been approved by the FDA, the expanded access program will be closed to new enrollments. Families currently enrolled in the EPA should contact Biogen (1-844-477-4672) for more information.

MORE: The importance of clinical trials in spinal muscular atrophy.

What are the risks associated with Spinraza?
Some of the risks associated with Spinraza are an increased risk of bleeding and an increased risk of kidney damage. Patients should have blood and urine tests before beginning treatment and before each dose to monitor risks.

What are the possible side effects of Spinraza?
Some of the possible side effects of Spinraza include respiratory infections, lung collapse, headaches, constipation, and post-lumbar puncture syndrome.

MORE: Cure SMA to host a webinar in May on Spinraza access, insurance coverage and trial results.

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 another 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.