Access to hemophilia treatments is a blessing I don’t take for granted

I love margherita pizza. Fresh tomato, mozzarella, and basil on a thin, crispy crust, especially when it’s made with cauliflower, taste amazing. My favorite restaurant adds banana peppers, which make it even better. Last Friday, I suggested pizza for dinner, and the hardest part was deciding whether my husband and I should order one or two so we’d have leftovers for the next day.

We purchased and enjoyed a second pizza on Saturday.

Having this kind of choice reminds me how lucky I am.

In many places, even nearby, people have a hard time putting food on the table or paying for gas to get to work. Many people with bleeding disorders face similar struggles in accessing their basic needs.

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Treatment access remains unequal

Both of my sons, Julian, 29, and Caeleb, 20, have severe hemophilia A. The condition can cause internal bleeding in joints and organs; left untreated, these bleeds can cause serious, lasting damage or even death.

Here in the U.S., multiple treatment options are available. While these can be expensive, many people can access them through health insurance or patient assistance programs. In developing countries, though, many bleeds go untreated because there aren’t enough medical or financial resources.

In the early years, I never worried about having enough medicine or supplies for my sons. Every month, a shipment arrived at my door. I didn’t realize how easy it was to get what they needed.

I’ve since learned about Save One Life, a nonprofit that provides direct financial assistance to individuals and families affected by hemophilia in developing countries. The organization also supports hospitals and nonprofits that help people with hemophilia, while its humanitarian program, Project SHARE, donates factor products.

Seeing photos of young boys and men with knees swollen as big as basketballs was shocking. Getting treatment allows boys to return to school without pain, while young men can start their careers, which not only changes their lives but those of their families, too. Being able to laugh, play, and join in daily life all depend on this important treatment.

Giving thanks

After almost 30 years, the regular shipments of factor and supplies to my door have stopped, as my adult sons now manage their own care. Still, when I hold a box of their medicine, I think back to those early days. Each vial seemed like liquid gold. I had everything I needed to care for my sons, and I’m truly grateful for that.

Now, when I make a small decision, I try to see it for what it is: a reminder of abundance. The extra pizza is more than just leftovers. It represents comfort, security, and the quiet privilege of not having to worry if there will be enough for tomorrow.

Every box of medicine delivered to my doorstep signified more than just treatment. These vials were hope, wrapped in Bubble Wrap and ice packs. The medicine enabled my sons to walk and run, play and dream.

Gratitude changes how I see everyday things. A cup of coffee, a delivery at the door, or a routine infusion can become special reminders of the blessings I sometimes miss.

Today, I’m taking a moment to pause, give thanks for the abundance in my life, and remember the love and laughter shared around my table.

Note: Hemophilia News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Hemophilia News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to hemophilia.