Dr. Sanjay P. Ahuja is a pediatric hematologist and chief medical and informatics officer at Innovative Hematology in Indianapolis. As incoming CEO, Dr. Ahuja shares insight into IHI’s Gene Therapy Hub, the first of its kind in Indiana.
Many readers may be hearing about the Innovative Hematology Gene Therapy Hub for the first time. In plain terms, what does your center do, and what gap in care were you trying to fill by creating Indiana’s first hemophilia gene therapy hub?
Ahuja: Innovative Hematology is home to the Indiana Hemophilia & Thrombosis Center — Indiana’s only federally designated comprehensive hemophilia treatment center. Our multidisciplinary team provides specialized care for individuals with a broad range of blood disorders, including hemophilia. We are the only center in Indiana where patients can be evaluated for and receive gene therapy for hemophilia B within a fully integrated comprehensive treatment center.
Hemophilia is widely known by name but not always understood. For readers unfamiliar with the condition, what happens in the body when someone has hemophilia, and how has it traditionally been treated?
Ahuja: Hemophilia is a rare inherited bleeding disorder that prevents the blood from clotting properly. Without the ability to form clots, even minor injuries — or spontaneous bleeding into joints and muscles — can lead to serious blood loss and complications. Managing hemophilia often requires frequent and costly needle-based treatments to replace the missing clotting factor.
Gene therapy is often described as a breakthrough. In everyday terms, what could a one-time infusion change in the daily life of someone living with hemophilia?
Ahuja: New gene therapies offer a transformative approach to treating hemophilia: a single infusion that enables the body to make its own clotting factor, reducing bleeding episodes by up to 90% for many patients. Following gene therapy at Innovative Hematology, most individuals may no longer need self‑infusions and can live with significantly fewer concerns about prolonged or spontaneous bleeding.
Until recently, many Hoosier patients had to travel out of state for this type of care. What does it mean for patients — and for Indiana’s medical community — to have a comprehensive gene therapy hub here now?
Ahuja: Comprehensive hemophilia treatment centers represent the gold standard in hemophilia care, and Innovative Hematology is home to Indiana’s only such center.
Patients here have access to a full team of specialists, from hematologists and nurses to physical therapists, pharmacists, dental staff, social workers, who work together to support every part of their care. Our gene therapy hub provides that same coordinated support while partnering closely with each patient’s referring provider.
Having this care close to home eliminates the need for extensive travel for patients and families during what can be an exciting yet stressful time.
New medical advances often raise questions about cost and access. What barriers still exist for patients seeking gene therapy, and how are providers and insurers responding?
Ahuja: Cost and insurance coverage are understandable concerns. Navigating bleeding disorder expenses can feel overwhelming, but our insurance coordinators specialize in this process.
Insurers are tightening coverage criteria and restricting eligibility, and sometimes receiving prior authorizations can be slow. While these hurdles can be daunting, we have successfully helped our gene therapy patients secure coverage and move forward with treatment.
