Adults in Hampton Roads who live with hemophilia and other inherited bleeding disorders can now access specialized care much closer to home.
Located at the College of William & Mary in Williamsburg, Virginia Commonwealth University’s new adult clinic will be the first in the region. It’ll help fill a long-standing gap for patients who often face high medical costs, complex treatment plans and previously had to make long trips for care.
“Driving to Richmond to receive this comprehensive care can, for some people, be quite a financial and time burden,” said John Christian Barrett, medical director for the Central Virginia Center for Coagulation Disorders at VCU. “And for others that don't formally currently engage with our program, it's just an insurmountable obstacle to have to make that distance of a drive.”
Bleeding disorders limit the body’s ability to form clots. The conditions can cause dangerous internal bleeding, joint damage and life-threatening episodes in severe cases.
According to the Virginia Department of Health, nearly three-quarters of Virginians diagnosed with bleeding disorders live in either Central Virginia, relatively near the state’s main comprehensive treatment center in Richmond, or in Hampton Roads.
For years, pediatric patients in the region have received care at Children’s Hospital of The King’s Daughters in Norfolk. But once they age out, adult services largely disappear, forcing many to drive long distances or delay treatment.
“The idea to open a site in Williamsburg came from our effort to better serve both current and future patients,” Barrett said. “We wanted to move closer to the Tidewater region to ease the financial and time burdens that often block access to optimal care and the support services these families need.”
Bleeding disorders are rare and expensive to treat, Barrett said.
Maintenance therapies for adults with hemophilia often cost about half a million dollars per year, while newer gene therapies can run into the millions for a single treatment.
“The disorder typically occurs following the first bleed as an infant, and is a lifelong commitment to maintaining factor levels in a safe range to avoid spontaneously bleeding and destruction of the joints, potentially fatal brain bleeds and other consequences,” Barett said.
He also noted the rarity of bleeding disorders also adds a barrier for patients because most general hematologists and primary-care providers rarely encounter these cases.
The new clinic’s team includes an adult hematologist and a pediatric hematologist, along with a nurse practitioner and three other nurses.
The Williamsburg clinic already manages more than 700 patients statewide, including hundreds with classical hemophilia.
Barrett expects that number to rise as more patients receive accurate diagnoses and as new treatments reach the market.
