Dakota Rosenfelt, who has hemophilia, delivers TEDxUMKC talk
Soon after Dakota J. Rosenfelt was born, doctors noticed bruises all over his body. They accused his parents of abuse. Then, when he was 13 months old, they figured out the true cause of the bruising: Rosenfelt had Severe Hemophilia A, a rare disorder that prevents his blood from clotting properly.
Since then, Rosenfelt, a first-year PharmD student at the University of Missouri-Kansas City School of Pharmacy, has refused to live his life with all the restrictions and inconveniences that sometimes accompany that diagnosis. He needs regular injections of a medication that makes his blood clot. And he’s required to track each injection and report all “bleeds” to his doctors. Though an inconvenience, Rosenfelt says it’s a minor one he won’t let stop him.
It was when Rosenfelt was a busy high school student in Belton, Missouri, that he began thinking about an easier way to manage everything. He eventually came up with HemoTool, a free mobile app that lets hemophiliacs do all the things necessary to successfully manage the disorder and keep it in check.
While other similar apps are available, Rosenfelt said, HemoTool has one important difference: It lets the user control the data. The other apps store the data on a drug company’s servers. He and others living with hemophilia had noticed times that when using those apps they received a flood of solicitations from pharmacies and others who stood to profit from their business. The drug that keeps Rosenfelt healthy costs $60,000 a month
“When you get contacted by companies you’ve never talked to before, I’m like, ‘Who are you, buddy? I don’t know you,’ ” said Rosenfelt, 20.
Rosenfelt came up with the idea for an app that would let the patient control the data. All of the information stays on the user’s mobile device, he said. And sometimes, for people living with hemophilia, it seems like not much is in their control. Insurance companies are often changing the rules of the game, saying they’ll no longer pay for a certain drug, or allow the patient to use a certain pharmacy.
“It’s kind of a big nightmare with people telling you what you have to use, where you have to go,” Rosenfelt said.
HemoTool is one thing he and his fellow hemophiliacs can control without anyone pulling things out from under them, Rosenfelt said.
Today, HemoTool is being used daily by many people in the U.S. market, which, according to the National Hemophilia Foundation, includes 20,000 people with the disease. The app is available through Apple’s App Store and through Google Play for Android.
Rosenfelt runs the nonprofit that sells HemoTool from his Kansas City home. He also finds time for school and is passionate about getting the word out about Hemophilia. Recently, he was a featured speaker at TEDxUMKC.
“This is a fantastic example of the endless possibilities for improving healthcare that can arise from a highly motivated and entrepreneurial UMKC student pharmacist,” said Russell Melchert, dean of the UMKC School of Pharmacy.