It was bound to happen. After 28 years of hand-delivering factor to foreign countries, I had to forfeit my gifts to patients and surrender the factor to customs. I traveled to Tanzania in early September for a vacation—it’s one of my favorite places in the world to visit. I was excited to introduce my boyfriend Doug to Africa, as it was his first trip. We would also travel to Rwanda afterwards, for a gorilla trek, but also to deliver factor IX to a little boy I’ve known for ten years.

But… customs had other ideas.

Things have changed radically in the world since I started delivering factor in 1996. I usually don’t bring paperwork with me. I provide paperwork when I FedEx factor—and let me rave about FedEx which has been so good to us. FedEx just seems to go everywhere and our factor has gone to Christmas Island, Iraq, Afghanistan… you name it. But when I travel with factor, I just stick it in the check-in luggage and hope for the best.

I’ve been single-out before: Argentina for a World Federation of Hemophilia Congress. Jamaica. Russia. Pakistan (65 pounds of factor, in fact). But customs has always let me go when they hear why I am bringing this life-saving drug into their country—because their government doesn’t provide it for their suffering citizens.

But times have changed. Security cameras are everywhere and even when a custom official hears my sad story, they can’t unsee it, and neither can the cameras. I lost about $58,000 in factor, and had to pay a hefty fine on top of surrendering the factor.

 I felt so sorry for the little boy in Rwanda. I showed up empty-handed. Supplies of factor IX for donation are drying up. WFH donations are becoming less common for FIX; so many patients ate appealing to me for FIX. There simply isn’t enough to go around. While we push national organizations to get patients registered, which boosts the number of known patients, we don’t have enough factor for all, despite this being the rallying cry of the community.

Well, we had to look at the humorous side to it. Of all the boxes I chose, that I keep in storage for shipping, what did I pick? A pretty blue box that must have held perfume, lingerie or something else that was risqué. The lettering on it said, “Tempt Me” and customs took that much too seriously.