No Easy Paths on an Adventure

Have you ever had the intention to do something and for whatever reason you just don’t get to it? Well, that has been me with this blog site. I keep meaning to update you all with what is going on but then I somehow get distracted. So sorry for the year plus of silence, but to be honest we haven’t had much to update you on.

We have been continuing the injections every 4 months with follow-ups shortly after. During the pandemic, Chris wasn’t able to do all of the tests to mark his progress so there wasn’t really a way to say whether there was progress or just stabilization. Either way Chris hasn’t felt a change since the beginning of the pandemic. Well, actually, he has noticed that the mask limits his breathing so he goes without one as much as he can. But from the consensus I hear, this is true for many people.

On a more recent note, we are contemplating switching to a new drug. One year ago, a new drug was put on the market to treat SMA. It’s called Evrysdi (risdiplam). We knew it was coming but didn’t want to change until we had more information. With a year on the market, we still have questions but are weighing out the pros and cons. In theory, Evrysdi only has one big plus going for it: the method of delivery.

For Spinraza, we travel to Columbus to have a specialist inject the drug into Chris’s spinal column via his neck. Which requires weeks of other medical visits to make sure he is not going to throw a blood clot due to medicine dose changes leading up to, through and at least a week past the injection. So far, in the 4 years of taking Spinraza, Chris has only had to deal with clots twice. Not fun, but obstacles we have had to overcome.

The new drug, Evrysdi, as I stated earlier, is a daily oral medication that if I understand correctly is administered by me at home. We don’t know if this drug will interact with Chris’s medicine (one of the questions we still have) but we may never know unless he takes it and is monitored for a while. Much like Spinraza though, this drug is expensive. With Spinraza, after the initial help we got from you all and many others in our community, we were able to get on a plan where Biogen covered what our insurance did not. Now we are looking into all the coverage options our prescription plan, insurance and the drug company (Genentech) have for this drug.

As far as the effectiveness of the drug, we have heard that it seems to have similar results as Spinraza for patients like Chris. There are new drugs in the works though that when paired with Spinraza or Evrysdi could help more. We are just patiently waiting to see how they work as well.

Even though SMA does not have a cure, we are seeing improvement more and more each year with each new treatment option. There is a lot more to be hopeful for in the SMA community and really the MD community with each year and treatment. We only have two asks for you right now: 1) pray for us to get some clarity on Evrysdi and 2) if you are able to, find an organization that is supporting the MDA and support them (local firefighters, businesses, families with MD, etc.). Thank you all for supporting us and praying for us always! You really do bless us in so many ways.