Health Sciences North (HSN) has opened the region’s first dedicated hemoglobinopathy clinic to provide specialized care for patients with sickle cell disease and thalassemia — two blood disorders historically under-recognized and undertreated, especially among Black, Caribbean, Middle Eastern, and South Asian communities.
The timing couldn’t be better, as staff at the clinic celebrate today World Sickle Cell Awareness Day. The day is meant to increase public knowledge of sickle cell disease, and raise awareness of the struggles sufferers of the disease and their families go through.
Sickle cell disease is caused by a genetic mutation that results in abnormally shaped red blood cells, which can block blood flow, leading to severe pain, chest issues, and other serious complications. Without appropriate care, the disease can carry a mortality rate of up to 40 per cent. Thalassemia, a similar disorder, also affects red blood cell production and can require lifelong management.
“This is more than a clinic — it’s a safe space,” said Tammy Bourque, clinical lead for HSN’s hemoglobinopathy program. “We want patients to feel believed, respected, and supported.”
Bourque said she learned much more about the disease after training with the Sickle Cell Association of Ontario, where she heard first-hand accounts of stigma and discrimination — patients being dismissed in emergency departments, or one mother dressing up in fear of being labeled a drug-seeker.
Because pain management is a central part of treatment, racial bias and the opioid crisis have complicated care. Many patients avoid hospitals altogether due to fear of being misunderstood or stigmatized.
The clinic’s team is determined to change that narrative. On clinic days, patients receive wraparound care — intake assessments, and consultations with a nurse, hematologist, and social worker — all under one roof. This model addresses both the physical and psychological toll of living with chronic illness and fighting for equitable care.
The program aligns closely with HSN’s five-year strategic plan, Together For You 2030, which commits to delivering exceptional care to the diverse people and communities of Northeastern Ontario. It also supports Ontario Health’s broader initiative to bring care closer to home.
Northern outreach will be an important component of this program, as it is with many of HSN’s programs, said HSN President and CEO David McNeil.
“The needs of Northeastern Ontario are significant and addressing them will require that we partner with other health providers and voluntary organizations. We cannot do this alone,” McNeil said, during the ribbon-cutting ceremony.
Until now, many Northern patients had to travel to Toronto for specialized care or go without.
“That’s changing,” said Bourque. “We’re already seeing referrals from pediatric hospitals and family doctors. The need is real, and it’s growing.”
In 2021, about 10 patients with sickle cell visited HSN’s emergency room. By 2023, that number had tripled. With immigration rising in the region, the clinic expects continued growth in demand.
Beyond treatment, the clinic offers education and counseling — including guidance for young adults who carry the sickle cell trait and may one day have children at risk of the disease.
“We’re still learning,” said Bourque. “But we’re here. And no one should have to face this disease alone anymore.”