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I'm Aware That I'm Rare: the phaware® podcast

A new podcast series devoted to raising global pulmonary hypertension awareness with dynamic stories from PH patients, caregivers and medical professionals from around the world. New Episodes every Monday & Thursday!

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Shannon Reitor - phaware® interview 208

Nov 20, 2018

Pediatric PH caregiver Shannon Reitor discusses her son Adam’s pulmonary hypertension diagnosis. Shannon details lobbying the Canadian government, the challenge of navigating side-effects of unapproved treatments for children with PH and how Adam became the first child in Canada to go on IV therapy.

My name is Shannon Reitor. I am from Edmonton, Alberta, in Canada, and my connection to pulmonary hypertension is through my son, Adam. He was diagnosed the day before his second birthday.

I always knew something was wrong with him. I did the typical parent fight for years, where you go in and you know something [is wrong]. They're not growing, they're not thriving the way they should be. Eventually, he wound up getting bronchial pneumonia, and that led to a hospital visit where they heard a murmur, and that's actually the direction that we wound up going in. So bronchial pneumonia was no longer a concern. Cardiology now was. It got brought in, and the day before his second birthday was his echo cardiogram, so it was his unofficial diagnosis. Two weeks later, was his heart catheterization where he received his official diagnosis.

I remember after that echocardiogram appointment, the nurses actually came to me and asked me if I was okay to drive home and I was like, "Oh, yeah, I'm fine, I'm just going to go have a glass [of wine]," and she looked at me and she said, "With the news you just had, you deserve a bottle." That's when I realized that I'd better find out a bit more about the direction we were about to go in.

The first thing that wound up happening was we obviously had to start putting him onto medications. So now you're dealing with medications, side effects. Unfortunately for him, one of them - bosentan, was not a positive one. He had every severe side effect you could get, which is not common in kids, so we had to figure out a way to switch that under Canadian laws. There weren't really any drugs that were available, so we had to do some special circumstances just to get ambrisentan in. It wasn't even available yet.

Usually, what we have to do is we have to lobby to the government. Through the government, if they give us approval, in order to bring it in, that means that they're going to financially cover it, because it's not under any of the pharmacy guidelines with how much it costs. Then we have to get the actual pharmaceutical company to approve that they're even going to send it, because now they're sending it to a doctor that now has to be responsible for it that is not under their guidelines and their care that have already been approved.

Once we get through that - and it takes time, they wind up sending it out to us. Most of the time it's under trials, so that way we don't wind up having to have it come out of pocket. Then they can use the data that they get from it towards their studies.

He was on subcutaneous Remodulin (treprostinil) for a couple of years. The sites then started to fall apart. He was within the first three kids in Canada to ever go on it. I know it wasn't popular in the United States yet, so really, we didn't know what we were doing or what long-term effects were going to be. His skin didn't hold up and it rejected all the sites. We were lucky if we got three days, so he became the first kid in Canada to go on IV Remodulin (treprostinil), which was a game-changer. It changed how well he felt. He wasn't in pain all the time, so we've experienced both sides of how that goes.

Unfortunately, his skin eventually didn't hold those lines, so we took a risk and he went pump-free for a while, while we fought for selexipag, that had been FDA-approved. It had been Health Canada-approved, but it wasn't available for us to get it, again, due to the politics behind it all.

I had to actually send in all the pictures of all of his gross sites and all of his line infections and everything, and it went to head office, and they sent it to us on them. They didn't even want the government involved by that point in time. They realized that some kids, they just are better candidates for it to try it out, because it wasn't a matter of there were other drugs available. There was nothing else available.

It's usually pretty frightening in the sense that we don't have any precedent set. We don't know what we're doing, we're just winging it and hoping that it works. In that sense, it's terrifying, but then once all the kids afterward start following and they start doing really well, then it feels good to know that him starting on something showed information, at least enough of it that they felt confident to have more kids get that kind of help.

Don't give up hope, because even eight years ago it was a lot harder than it is today, and if we can come this far within the last eight years, I can only imagine what the next couple are going to look like. It's not going to take long before our kids are running around just like anybody else.

I'm Shannon Reitor, and I'm aware that I'm rare.

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