Shire plc, the biotech leader in rare diseases, today announced a collaboration with MicroHealth to support a free and secure care monitoring tool for hemophilia A and B patients with inhibitors and their care teams. MicroHealth, a digital health company co-created by a hemophilia patient, developed the tool, in the form of an app, to help improve hemophilia patient care and outcomes through the ability to set reminders, track, store and selectively share personal health data, including photos and bleed alerts, with care team members. Shire’s collaboration with MicroHealth will help the start-up customize the tool with new features and information specifically for the 5-7 percent of hemophilia patients with inhibitors. Both companies remain independent in this collaboration and Shire does not have access to any patient, caregiver or other third-party data through this collaboration.
“At Shire, we want to do everything we can to help people manage their hemophilia and to limit the burden of the disease on their everyday lives,” said Patty Torr, Head of U.S. Hematology, Shire. “Shire is a long-standing partner to the hemophilia community and has served hemophilia patients with inhibitors for more than 40 years. Enhancing the existing MicroHealth app with new functionality and resources to address the needs of hemophilia patients with inhibitors is an important innovation for this group of patients.”
Inhibitors are a serious complication in hemophilia patients that can occur when the patient’s immune system prevents standard treatments from working by producing antibodies that “inhibit” the necessary formation of blood clots. Inhibitors destroy clotting factor treatments as if they were harmful foreign substances before they have a chance to stop the bleeding, making patients with inhibitors very difficult to treat. Bypassing agents are an alternative method to control bleeding and are the current standard of care for hemophilia patients with a high amount of inhibitors.
Though prophylactic treatment, or preventative care, is now recommended for managing many patients with hemophilia, the difficulties associated with maintaining this type of treatment regimen can result in a lack of adherence that leaves patients at risk for bleeds and subsequent joint damage.The aim of the MicroHealth app is to make it easier for hemophilia patients to manage their care with their healthcare provider.
“I created the MicroHealth app with a keen understanding of the challenges and complexities of managing hemophilia based on my own experiences living with severe hemophilia A,” said Aaron Craig, Co-Founder, MicroHealth. “I wanted to develop a tool that would help streamline hemophilia care to produce stronger adherence. We’re excited to partner with Shire on extensions to the app to better support patients with inhibitors and their care teams.”
Launched in 2011, the MicroHealth app is already widely used among hemophilia patients without inhibitors. An estimated 20 percent of American hemophilia patients on prophylactic treatment are MicroHealth app users, and it has been linked to a meaningful reduction in bleed rates. A recent 12-month observational study of 256 patients showed that hemophilia A patients who received digital monitoring by their healthcare provider via the app reported bleeding rates that were 57 percent lower than patients without digital monitoring. This translates into nearly 3.5 fewer bleeds per year.
The MicroHealth app is free and available for download worldwide in both English and Spanish on Apple and Android devices. Patient data is protected through industry-standard security and privacy protocols.