Hugo Trevino: Being firm about what you want in your SMA care

Hugo Trevino, who has SMA type 3, shares his advice for how patients and caregivers can respond in situations where they feel dismissed or suppressed by their healthcare team.

This definitely happened, especially with the treatment of the new drugs that came out for spinal muscular atrophy, right? There were so many options, and as drugs were getting approved, I spoke to my neurologist. I let them know about the new treatment. They told me that, you know, it had only been approved for children, that the options, you know, or the studies weren’t really there for adults, which I totally respected. I respect her opinion. And so she said for me to wait a little bit longer to see if more studies could be conducted for adults, or to see what could be done in that instance.

From there, I decided to join Facebook groups. That was my one resource. You can also do like SMA News Today, different things like that, where they print out really interesting articles. Just also contact Cure SMA, where you’ll get a community of people with spinal muscular atrophy that are kind of going through this.

That’s where I started really seeing how some people were kind of fighting back with their neurologist and trying to be like, “Hey, we get that this was approved for children, but as adults, we also deserve equal access to healthcare.” And so from there, some people started talking about how they were part of clinical trials, how they were able to kind of get in there.

And so with my doctor, I told her that I also did not mind being an adult who was kind of going to be like almost like a guinea pig, especially if the information wasn’t out there. You know, this was something that was exciting for me. And I wanted to just make sure that I can get access to this treatment as soon as it was made available for adults.

And when I did my follow-up appointment with my doctor, I let them know how important it was for me and that it wasn’t just something that I was, you know, casually asking. But it was something that if I — if it could apply to me and if they did think that I was a good candidate — that I would really want them to advocate for me.

And so I just really stressed it, that it was something that, you know, again, was super important for me, and that I wanted them to continue to look into information and, you know, get me to be a candidate. And luckily, the drug that I’m on was approved in like 2016 and I was able to start treatment in 2018.

So it did take a little bit, you know, for me to be able to get with my doctor. At that point, I was only meeting with them once a year, but I also recommend, if there’s a MyChart, if there’s a way for you to email or send messages to your doctor, right, and their team about articles that you’re reading or different options, do not be afraid to kind of send them to them, ask them what they think about that. I talked to them about what people were saying on online threads or what their other patients were doing too, you know, without trying to violate HIPAA.

To just be like, “Hey, do you have other patients with SMA? What are their ages? Do you have any other adult patients?” Like, you know, if you’re the only adult patient, maybe if you can ask them if they can refer you to someone else that’s seeing other adult patients, right? Or if they can get that second opinion, or for you to get that second opinion.

And so my doctor from there, she actually also was like, “Hey, Hugo, thank you for kind of pushing me.” You know, they were a little bit hesitant about it too.They’ve known me for a while as well. So it was kind of like a journey that we went on together.

Also maybe post questions differently and don’t be afraid to have follow-up questions on your phone, or again, email through MyChart your doctor follow-up questions if you forgot to ask them something while you were in there seeing them face to face.