Gratitude Stories - J.R.
First-ever patient in Rhode Island to receive groundbreaking gene therapy for Hemophilia B
Hemophilia B is a rare, inherited bleeding disorder. It’s caused by a deficiency of Factor IX, an essential clotting protein that plays a crucial role in blood coagulation.
People with this dangerous medical condition can experience excessive, uncontrollable bleeding, even after minor injuries. John R. Landry, Jr—or “J.R.,” as he’s known to friends and family—is one of those people.
To manage his disorder, J.R. began receiving infusions as an infant, and has undergone a regimen of weekly prophylactic infusions for about 30 of his 39 years. Fortunately, that treatment pattern stopped for good recently when J.R. received Hemgenix, a groundbreaking gene therapy for Hemophilia B at Brown University Health’s Hemostasis and Thrombosis Center on the Rhode Island Hospital campus.
The therapy works by delivering a one-time healthy copy of Factor IX, or a functional gene, into the liver cells, allowing the body to start producing the protein clotting factor that is missing, thus replacing the need for frequent infusions. J.R. was the first-ever patient in Rhode Island to receive this gene therapy.
“The biggest change, aside from no longer needing infusions, is not having that constant worry in the back of my head that if I go outside to play with my son and I get hurt I don’t have to treat it right away,” J.R. says. “I can just go … and live.”
The gene therapy medication administered to J.R. was carefully compounded in our hospital pharmacy by Christopher Gemming, Pharmacy Technician Supervisor for the Brown Health Cancer Institute, who also has hemophilia. So, he knew just what J.R. was going through.
“As a hemophilia patient myself, I wanted to help him get better,” Christopher explains. “I am relieved to hear that he is doing well and the medication is working.”
The compassionate, exceptional care J.R. received extended to his hematology/oncology team and entire support staff, who put his patient experience and outcome at the heart of their efforts. Something he and his family were grateful for.
“As a mom, after watching him go through what he went through, this is an overwhelming feeling,” says Susan Landry, reflecting on her son’s healthcare journey and Rhode Island hospital patient experience.