Navigating My Treatment Journey as an Adult with SMA – 5 Steps
Last updated: September 2023
My journey to getting treatment was not a conventional one. I had not been seen for my SMA in over 13 years. After college, I had moved out of state and lost the relationships I had with my treatment providers and never had a good enough reason to recreate that network.
I also had worked the entire time I had been gone. Private insurance is not kind to those with disabilities. High deductibles and poor coverage made me more likely to buy items that I needed for my disability out of pocket.
If I didn’t need to use my insurance, I also did not need to find a health care provider, let alone specialists.
Starting to navigate treatment options for SMA
After I had my daughter, it made working very difficult. I was no longer able to transfer to the toilet on my own. This led to me applying for SSDI and leaving the career that I really enjoyed.
It also meant that because I was no longer having to work, I could move back to my home state. It was a perfect storm of getting covered again through Medicare/Medicaid and being able to go back to my medical facility where I had been treated since I was a child that allowed me to actually seek treatment.
Evrysdi had also recently gained FDA approval! It was time for me to figure out the puzzle on how to get treatment.
Research on the Evrysdi website
I started my research with the Evrysdi website. On their website, I found something called a PAL (Partner and Access Liaison). My PAL was able to give me a few neurologists in my area who had success in getting Evrysdi approved for their patients and covered by insurance.
A neurologist is needed in order to get this medication prescribed. In a few instances, a neurologist can give approval to a general practitioner to write the prescription but this is a rare situation.
The steps I took to get approved for treatment
1. Get a referral from your general practitioner to a neurologist
I was able to get in to see my general practitioner fairly quickly. I came prepared with what my goal was, receiving treatment, and the exact neurologist’s name that I needed a referral to. Since SMA is so specific and Evrysdi is fairly new, your general practitioner may not even know about it.
Your GP also may not be able to point you to a neurologist who knows about it either. So, do your research upfront. It will save you a lot of time in the future.
2. Get an appointment with a neurologist
This piece of the puzzle took some time. It took time for the neurologists’ office to get to the referral.
Once they had it and contacted me for scheduling, the first available appointment was not for 3 months. Do not get discouraged! You are worth the wait.
3. Speak with your neurologist about the pros and cons and what you need to do in order to get approved for this medication
My neurologist was aware of why I was coming to this appointment. We went over all of the pros and cons of Evrysdi. We went over the side effects of the medication and fertility concerns.
We discussed Spinraza as another option. I knew I wasn’t open to Spinraza and I knew I was wanting to start Evrysdi.
I also needed to know how many copies of SMN2 I had in order to get approval for insurance. Typically, you need 3 or more copies of SMN2 in order to be considered.
Since I had been diagnosed through a muscle biopsy as a child. I did not have this information. Genetics was not advanced enough at that time to provide that information.
We did a blood draw in order to get that information. I got the results two weeks later that I had exactly 3 copies.
On to the next step!
4. Complete the Revised Hammersmith Functional Motor Scale and Revised Upper Limb Module Evaluations
Next, I needed to complete the evaluations listed above in order to get a baseline of how strong I was. Insurance wants to see that the condition is in fact staying the same or better yet improving!
These evaluations are typically done by a physical therapist. The physical therapist needs to be certified in these types of evaluations. It can be difficult to find someone who has experience with this.
My neurologist did have a resource available and hopefully, yours does too! This testing is prior to treatment, 6 months into treatment, and typically every year after that.
My journey to treatment approval
It took about 3 months to get the evaluations completed and to finally get the approval for Evrysdi! In total, this journey took about 6 months from beginning to end.
Remember I was starting from square one. Once approved for Evrysdi, the medication arrived about a week later from the specialty pharmacy.
I hope this gives you a map and a way to your treatment if that’s something you decide on! Evrysdi is approved for all types of SMA and for all ages. Speak with your doctor to get your journey started.
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