Study Renews Important Message for Hoosier Hemophilia Patients

By Kylie Veleta, Business of Health Reporter & Special Projects Editor

INDIANAPOLIS - The Centers for Disease Control and Prevention says people with hemophilia should rely on (HTCs) to ensure they’re receiving the best care for the medical condition—and Indiana is home to one of the largest HTCs in the nation. Despite this unique strength, a recent study shows some Hoosier patients are still seeking care elsewhere, and it worries Indiana Hemophilia & Thrombosis Treatment Center (IHTC) Chief Executive Officer and Co-Medical Director Dr. Amy Shapiro. Backed by this new evidence, the Indianapolis center is amplifying its message for both patients and other care providers.

Hemophilia is an inherited condition in which the blood’s ability to clot is drastically reduced, meaning even a slight injury can cause severe bleeding. An influential national CDC study conducted in the 1990s revealed that people with hemophilia treated at an HTC had superior outcomes, compared to those outside the network. HTCs are federally-designated healthcare centers that specialize in treating people with hemophilia.

“[The study results] were the first push to say all patients with these bleeding disorders need to be referred to this [HTC] network around the country, because they ensure better outcomes for these patients,” says Shapiro. “But since it’s been so long since the study was done, a lot of people were throwing stones saying, ‘Is that still true?’ So we did the study in our state.”

Called the Indiana Hemophilia Surveillance Project, the study was a collaboration among IHTC, the Indiana State Department of Health and the CDC. The team analyzed medical records to document cases of hemophilia in Indiana, their severity, if the patients sought care at a federally-designated HTC or elsewhere and their outcomes. IHTC is the only HTC in the state, but the study also included Hoosiers who live near Indiana’s borders and visited HTCs in neighboring states.

Echoing the results of the national study several decades ago, the project showed “if you’re not being seen at an HTC, you’re not receiving the best care,” says Shapiro. Overall, 82% of Hoosiers with hemophilia visit an HTC for care, a greater number than decades ago. The study also revealed patients connected to an HTC are 47 percent less likely to visit the emergency room, and 80 percent of Hoosier HTC patients are more likely to self-administer medication, resulting in fewer bleeds.

The project also reports HTC patients have greater compliance with preventative care. Overall, patients seeking care at an HTC had more severe forms of the disease, yet showed better outcomes.

“Local hematologists, or other large medical center groups, think they can provide the same level of care and resources for these patients,” says Shapiro. “They can’t, because they’re not focused on these rare diseases, and they don’t have the same kind of multidisciplinary, embedded services that are really leveraged for the outcome of these patients.”

The project also uncovered that there are 129 Hoosiers who have hemophilia, but aren’t seeking care at an HTC.

“We care about those 129 patients. We want to find them and want to hook them up to a federally recognized HTC, and we want their outcomes to be better,” says Shapiro. “Besides those 129 people, there are more patients with mild hemophilia out there who have not been diagnosed, and we need to find you. People with mild hemophilia think it’s not a problem, but that’s not true. When something else happens to you in life—an appendicitis, car accident, injury—you’re at risk of a consequence of your hemophilia that can include even death. We don’t want that to happen.”

Shapiro says the study not only reinforces the importance of patients connecting with HTCs, but also brings more urgency to IHTC’s mission to find and help people with hemophilia.

“Indiana has an incredible resource for bleeding disorders in our center,” says Shapiro. “I want to use those resources to help every Hoosier who has a bleeding disorder. If we don’t know you, we want to know you and want to help you.”

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