Julian MacDonald opens up about life with severe hemophilia A, from early diagnosis to the financial and insurance challenges he faced in adulthood. He shares how leaning on pharmacists, care teams, and the broader hemophilia community became essential to understanding he didn’t have to manage everything alone.
Transcript
My name is Julian MacDonald. I’m a singer, and general doer of things. I currently live in Las Cruces, New Mexico, and have severe hemophilia A. I was diagnosed when I was 3 months, 4 months, a number of months old.
My strategy for managing finances is I really don’t have one. My strategy is surrounding myself with people who know more than I do. And then I sort of learn through osmosis. That’s kind of been my experience thus far.
So like staying in, like, community with like, well, the community. So like, your pharmacists, your HTC, those people have been abundantly helpful to me and will hopefully continue to be, because without them, I’d be kind of swimming.
I started seriously thinking about this process financially when I turned 26, and I was sort of kicked off my parent’s insurance. Without speaking too much as to like the medical system as it is, there’s a lot of people I know who simply go without health care, who can kind of afford to, for one reason or another, for one reason or another, and I obviously can’t.
So it took, I was very fortunate having parents who were connected specifically in the community, who were able to help me find people who would also help me. I would encourage people to get a little more involved and anticipate things years out.
I think it’s very, very hard to educate people on our very complex and frustrating, health care system. We just don’t have the luxury of ignoring it. A lot of my experience in the hemophilia community, it wasn’t really, people — people tried, but it wasn’t really communicated to me effectively why community is important.
So really, the only reason I got those resources that I needed was because the community cared enough about me somehow to reach out and help me through rough spots and then, as I was in dire need, the light bulb turned on. Oh, we need each other. We help each other.
My advice is to get involved earlier. It’s like I said, it’s really hard to communicate how important something like that is, and it’s even harder to do it in the confines of something like this.
As far as like community members that have helped me, I don’t know if I can name names or if I really can name all of the names of people who have helped me. But it definitely took a village, especially to navigate something like this.
It takes a village, and if I knew that I didn’t have to do all this on my own, it would have been gotten done a lot easier and quicker than before.
