Advocates for patients with sickle cell anemia at the Ottawa Hospital say they want to see to see a pilot project that provides extra care extended into a permanent program.

The Ottawa Hospital Academic Medical Organization funded the one-year grant to pay for the salary of a nurse who coordinates the care or 100 patients with sickle cell anemia, a genetic blood disorder that can lead to a number of health complications. Funding for the project ends in August and patients are worried it won't continue.

Unita Louis, whose 33-year-old son has had sickle cell anemia all his life, said she can see the difference since the nurse, Kim Franchina, was hired.

Louis said each patient with sickle cell anemia has different symptoms, and her own son struggles with muscle weakness, an enlarged heart and intense pain.

"Having Kim as the nurse — guiding the doctors and the nurses in the emergency room — has made a tremendous impact on both patient and staff," said Louis.

Program needed, says CHEO doctor

Franchina is not allowed to speak about the program. But Dr. Robert Klaassen at CHEO is an advocate for her position and said these patients need the extra care.

"One treatment that we give to a lot of our patients...is actually a chemo drug," said Klaassen. "It's quite a strong medicine, so they need to be monitored regularly to get their blood counts measured because it can suppress their bone marrow, so you really need to be on top of it."

Klaassen said the position saves the system money in the long-run by preventing hospitalizations.

"It's quite a debilitating, life-threatening disorder with the whole additional aspect of the pain crises," he said.

"So not only does coordinated care help them live longer, it also avoids them being admitted to hospital."

Advocates for the position say they are appealing to the Ministry of Health and Long Term Care for a permanent funding solution.