Text on Screen:
[AYVAKIT logo]
AYVAKIT® (avapritinib) is a prescription medicine used to treat adults with indolent systemic mastocytosis (ISM). AYVAKIT is not recommended in people with low platelet counts (less than 50 X 109/L). It is not known if AYVAKIT is safe and effective in children.
AYVAKIT may cause serious side effects, including: cognitive effects, skin sensitivity to sunlight (photosensitivity), and harm to your unborn baby.
Please see additional important safety information near the end of this video. Please see the link above for the full Prescribing Information, including Patient Information for AYVAKIT.
Andrew:
Try him. He can talk.
Andrew:
My name is Andrew. I was born and raised in Salem, Oregon. I’ve…
Text on Screen:
Andrew was compensated by Blueprint Medicines.
Andrew:
…lived here all my life. I’m married to Shannon. We’ve been married for almost 24 years now. We have three kids. As a family, we enjoy white water rafting, camping. We do some rock climbing. Although as I'm getting older, there’s less of a desire to be hanging from a cliff somewhere. But we are definitely a nature-oriented family.
Andrew:
I was diagnosed with indolent systemic mastocytosis in 2017.
Text on Screen:
Andrew, Salem, OR
Diagnosed with indolent systemic mastocytosis (ISM) in 2017
Andrew does not provide medical advice.
Andrew:
I think, like probably a lot of people with ISM, I didn’t quite realize that I had this disease. In fact, I had no idea. I just knew that my eyes were watery and itchy. I started to notice uncomfortable, sort of itchiness in my skin joint pain, spots on my body, GI issues, and fatigue setting in, uh, more than it had in the past. So I was at a routine skin check with my dermatologist. He did a biopsy… on one of the marks on my skin which, uh, he was suspicious about. And he explained that, uh, the biopsy had come back positive for this thing called mastocytosis. I had never heard of it before. So we found a specialist in Boston who was an immunologist. Before I flew out, the doctor asked that I have a test for a KIT mutation, which came back positive. I also had a bone marrow biopsy. We booked a flight to Boston and she was able to diagnose me with indolent systemic mastocytosis, and uh, explained to us all these different symptoms almost assuredly related back to this single diagnosis that we didn’t know about before. It was scary. The doctor’s advice was that we treat all these different symptoms individually with eye drops, antihistamines, and antacids. She recommended that I connect with a local hematology oncologist, uh, here in Oregon. The diagnosis didn’t stop me. I wouldn't even say it necessarily slowed me down, but it did require me to be really thoughtful about where I was going what I had with me, when I would be back, and things like that. It was a complicating factor, for sure. My family and I were on a five-day rafting trip. No reception. No roads in or out. And on the second night there I had a very strong reaction. I remember getting up and taking a few steps and uh, then collapsing. It was hard to breathe. Uh, my breath was very shallow. Fortunately, my friend who was there with me, um, had some epinephrine. That seemed to bring me back and I sort of recovered. We talk about treating these different symptoms and playing whack-a-mole with these different symptoms. But when you have a reaction, like that it’s more than, you know, “How can I treat this and finish this day at work?” I became much more interested in pursuing different treatment options for ISM. I first heard about AYVAKIT during the trials. For me, I had to seek it out. And then when I sat in my hematologist’s exam room, I said…
Andrew:
…Hey! There’s this drug that I read about it called AYVAKIT. Seems to be the only the drug that treats, you know, the disease that I have, ISM.
Text on Screen:
AYVAKIT is the only FDA-approved drug for adults with ISM. AYVAKIT is not recommended in people with low platelet counts (less than 50 X 109/L). It is not known if AYVAKIT is safe and effective in children.
Andrew:
I can remember to this day, literally he spun around in his chair and flipped on the computer, and started learning about AYVAKIT as I sat there on the exam table. He took some time to research it himself. We decided it would be worth it for me to give it a shot. I started taking AYVAKIT in November of 2023. I wanted something that targeted the source of my ISM, in addition to supportive care. My doctor and I had a plan to watch out for any potential side effects.
Andrew:
Since starting AYVAKIT, I’ve noticed changes in my ISM symptoms. The GI issues are feeling better. I think we’ve noticed a visible reduction in some of the marks that come from the ISM.
Text on Screen: ISM signs and symptoms evaluated in the clinical trial were: abdominal pain, nausea, diarrhea, spots, itching, flushing, bone pain, fatigue, dizziness, headache, brain fog.
Andrew:
The solution’s going to be different for everyone, but this has been a great option for me. I would love to encourage other patients to sort of chart their own course, and lean into finding a solution. If you’re considering AYVAKIT, I would suggest talking to your doctor and educating yourself about ISM and your treatment options. The solutions are there, you just have to find them.
Text on Screen:
Target the source of ISM
[AYVAKIT logo]
Text on Screen: Scrolling Important Safety Information
Text on Screen: [AYVAKIT logo]
Patient voice and images of patient, caregiver, and family used with consent.
