Hemophilia Patients Want to Lead More Active Lives, Survey Results Indicate

Patricia Inácio, PhD avatar

by Patricia Inácio, PhD |

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HemACTIVE survey

Preliminary results from the U.S. part of Bayer’s global HemACTIVE patient survey show that a majority of hemophilia patients want to be more active but are limited in their capacity to perform outdoor activities.

The data was shared by Bayer at the World Federation of Hemophilia 2018 World Congress in May in Glasgow, Scotland.

Specifically, the HemACTIVE survey results showed that nine out of 10 patients want to increase their physical performance and even join outdoor activities. However, two out of three patients reported that their disease was a major impediment.

Most of the survey participants reported that due to fear of bleeds, pain, and joint damage, they carefully assessed which activities to perform, and one out of two said they increased their treatment routine to be able to be more active.

Bayer’s HemACTIVE survey included 330 people ages 18-65 with hemophilia A living in the U.S, Germany, France and Italy, as well as parents of young children and adolescents with the disease.

The survey’s goal was to gather patient-reported assessments on how hemophilia A impacts their daily life in a hope to improve current treatments and develop more effective therapies.

The final results of the HemACTIVE survey are expected by August 2018.

“Although significant progress has been made over the last two decades, people living with hemophilia are still experiencing physical and emotional burdens that can limit their ability to be active,” Mark Skinner, lead investigator of the HemACTIVE survey, said in a press release.

“Our hope is that this survey will help us better recognize how hemophilia A impacts quality of life so physicians can better tailor care to enable patients to fully participate in the things they enjoy,” he added.

Aleksandra Vlajnic, MD, vice president of U.S. medical affairs at Bayer, said in the last 25 years, “Bayer has been committed to understanding and adapting to the evolving needs of people living with hemophilia A.

“We look forward to working with our partners in the hemophilia community to further analyze and apply these survey results and to explore new ways to help patients with hemophilia A,” she added.

At the conference, Bayer also announced the recipients of two research grants and a Caregiver Award.

Clay Cohen, MD, Baylor College of Medicine in Houston, received a Fellowship Project Award for his project to investigate factor VIII and factor IX activity in a new lab model of blood coagulation.

Alessio Branchini, MD, of the University of Ferrara, Italy, received the Early Career Investigator Award for investigating a new set of proteins with enhanced activity as a therapy for hemophilia B.

Bayer’s Caregiver Award was delivered to Jenny Margarita Palma Romero in Colombia. She developed a project to advance the training skills of healthcare professionals taking care of people with hemophilia in Colombia.

“We are proud to recognize the work of Dr. Cohen, Dr. Branchini and Ms. Romero and the promise their efforts hold to better our understanding of hemophilia,” Vlajnic said.

“Through these grants, Bayer is demonstrating our commitment to the overall health and well-being of patients. Whether enabling scientific advances or training around first-time infusions, we’re proud to support both scientific research and caregiver education,” she added.

Last year, Bayer filed a biologics license application (BLA) for BAY94-9027  with the U.S. Food and Drug Admnistration as a potential therapy for hemophilia A in adolescents and adults, age 12 and older.

BAY94-9027 is a long-acting, synthetic coagulation factor VIII undergoing evaluation in an ongoing Phase 2/3 trial, PROTECT VIII (NCT01580293). The investigative therapy’s prolonged half-life means fewer infusions to keep sufficiently high levels of active factor VIII in patients’ blood.

Participants are treated with BAY94-9027 on-demand or as a preventive treatment for 26 weeks, with an option to continue treatment for at least 100 total exposure days, or days on which infusions take place. The trial is expected to conclude in January 2019.