Organ transplants take a physical, emotional and mental toll. So CSL Behring and Lyfebulb created the first online community for transplant patients, family and friends, and living organ donors.
TransplantLyfe began at the suggestion of a patient advocate, who reached out to CSL Behring after reading that it was getting involved in transplants. After connecting with Kevin Kovaleski, VP of global commercial development in the transplant business, the patient brought him together with the founder and CEO of patient engagement platform Lyfebulb, Karin Hehenberger, M.D.
Hehenberger is a two-time transplant recipient but had never thought of herself as a transplant patient, but as a diabetic—the cause of her transplants. That disconnect is part of the reason no similar community platforms around organ transplant had been created before, Kovaleski said.
“I thought that people genuinely saw themselves as transplant patients, but that oftentimes is not the case,” he said. “They identify with the function and the diagnosed condition they’ve had that caused them to get a transplant.”
Last June, CSL Behring acquired Vitaeris, a clinical-stage biotech developing clazakizumab, an IL-6 antibody designed to treat chronic antibody-mediated organ rejection. The drug is currently in phase 3 trials. Clazakizumab joins two other late-stage candidates in the company’s pipeline of meds for organ transplant patients, the company website says.
The TransplantLyfe website launched about a month ago, and the response has been positive—confirming the unmet need in the community, Kovaleski said. Patients can connect and help one another emotionally and practically. They can find friends, ask questions in forum chats and even create a journal of their own healthcare information.
Lyfebulb, which manages the platform, identified some patients for training as ambassadors to help in different areas. However, Kovaleski stressed the forum is not place for medical advice; the emphasis is on patient-to-patient engagement.
CSL is now looking to the future with plans to grow the site, with improvements and adjustments depending on the needs of the community.
“Our footprint in transplant is new—we’ve only identified transplant as a therapeutic focus for our organization within the past three or four years, and we’re only in the development stage so we don’t have any products on the market currently,” said Kovaleski. “But we hope to make this a thriving therapeutic area for the organization in the future.”