My Experience Switching Treatments

For as long as I can remember, I have been doing intravenous injections three times a week, using an SHL (standard half-life product). My treatment was effective at both preventing and stopping bleeds. It was safe, with a long track record in our community. I never experienced side effects. Personally, knowing that it directly affected my body’s factor levels, measurable through PK tests, was comforting to me.

As I approached age 26, life started to get busier. I had to move off my parents’ health insurance, started a new full-time job with my own insurance for the first time, and attended grad school simultaneously. Doing injections three times a week was feeling like a lot. I talked to my mom about my goals. She suggested looking into an EHL (extended half-life) medicine made by the same manufacturer of the medicine I was on at the time. Its main difference was a longer half-life and a scientific molecule called PEG. Curious about the science behind it and safety studies, I did online research. I also asked my HTC doctor about the PEG molecule’s safety profile during my annual visit, but my question was somewhat dismissed. I was told it was safe and that was the end of the conversation. I didn’t feel supported in asking questions while considering new treatments, which was a big part of the reason I decided to switch HTCs. We are lucky to be able to do so in New York City, with multiple HTC options. The team at my new HTC was happy to answer my questions and provide me with information about related research studies.

I’m proud of myself for advocating for myself when I was unhappy with my care. It isn’t always easy, but asking around for others’ experiences with their HTCs and treatments was assuring to me. Community voices can be such a strong source of support. An essential resource for me was also social media—community forums on Reddit and Facebook where I can ask what others think about new treatments. What’s their half-life, any side effects, other thoughts? Hearing the lived experience of other Hemophiliacs plays a big role in my decision-making process and supported what I learned in my research and in consultation with my new HTC team.

I decided to switch to an EHL and started doing twice-a-week treatments, which I was satisfied with for about one year. During that time, the treatment was working, but I still felt slightly overwhelmed by dosing frequency. I started researching other products once again–reading about a new treatment that only needed to be administered once a week. Clinical trials included one severe Hemophiliac who is assigned female at birth, which is rare for a hemophilia clinical trial. It was reassuring to know a participant had the same clinical profile as myself. I particularly noticed the manufacturer’s brochures about the longer half-life, technology that surpasses the half-life ceiling by using exogenous (external and not created within the body) VWF (Von Willebrand’s Factor). The graphic comparing EHL and SHL (standard half-life) factor products to this product’s average half-life stood out to me. Maybe now I’d be able to strength train more, worrying less about bleeds after exercise!

Switching to a new product can be intimidating—worrying about its efficacy and safety, as well as taking time off work to get PK blood testing during workdays. I didn’t switch to this product right away, although I was interested. NYCHC hosted their In The Know Summit, inviting representatives to present slides on newer treatments. I attended a session to learn more about this new treatment, asked a lot of questions, took notes on efficacy, safety profiles, and scientific mechanisms. Although concerned about long-term risks of this medicine, no studies commented on this. I talked to my HTC about this concern, and I felt listened to.

In the end, I decided to give it a try, and have been on this new treatment for one year. I’m very happy with it. It’s the intravenous method I’ve known all my life, a manageable frequency, WAY less storage space needed at home and while travelling. I’ve had maybe one start of a bleed this whole past year. I tend to avoid strenuous physical exercise the day before my dose is due but otherwise am far more comfortable with exercise. I have even taken an intro to scuba diving class, going down thirty feet in conserved kelp forests with bright orange garibaldi fish. I hope sharing my process of choosing and switching treatments can help others.

Recent photo of Tai scuba diving.