Moving the Sickle Cell agenda forward

By Jasminee Sahoye


As Sickle Cell Awareness Day was observed on June 19, stakeholders have moved the agenda forward by looking at ways to educate aspiring health care providers on how to help to care for sickle cell patients and their families with the disease.

Sickle Cell disease (SCD) is the most frequent genetic disease worldwide. It is present on four continents.  It is estimated that 500,000 are born every year with this severe and invalidating condition and that 50 per cent of them will die before the age of 5.  Trans-continental, SCD is also trans-ethnic and affects black populations from African origin and Arabic, Indian and Caucasian populations from Southern Europe.

A joint conference Sickle Cell: A Family Affair, the first of its kind with Humber College and the Sickle Cell Association of Ontario (SCAO) sought to discuss curricula, healthcare delivery, and to educate future generations on sickle cell disease, the ‘hidden disease,’.

Prevention, recognition and management of sickle cell disease still remains a mystery.

Humber College plans to incorporate into its Health Sciences curricula courses about the disease, which is not widely known by health care providers.

“Many professionals lack the knowledge, skills and judgement to provide effective care to clients living with sickle cell disease. Few people in Canada have ever heard about sickle cell disease,” said Janet Jeffery, Nursing Professor.

“Participants will learn about the skills, judgement and attitude required to care for patients with sickle cell disease along with the knowledge that excessive treatment or mismanagement of symptoms can lead to complications and even death.”

Heather McConnell, Associate Director, International Affairs and Best Practices Guidelines Programs, Registered Nurses Association of Ontario welcomes the inclusion that will address sickle cell anemia adding that it is a system level change. “The more we can include content related to specific public health issues and communities, the more important that becomes in terms of being able to support positive outcomes for clients.”  She adds that many of the nurses will meet patients who have sickle cell and “they need to be prepared to provide appropriate care for those families.”

Lillie Johnson, founder of SCAO, has been fighting for some 32 years to erase the stigma that sickle cell disease is associated with black people.  “I never thought that I would make it to see this day…  It is a great day for the sickle cell population,” referring to Humber College staging a conference to discuss sickle cell and including it into their health sciences curricula.

“When we started this association, our mission was to educate not only professionals but the population at large.  Nobody knew what sickle cell was, they thought it was black people disease, they thought it was cancer, …infectious …HIV and they thought it was a sexual transmitted disease.  Throughout the years because sickle cell was first discovered in Africa, it still maintained this racial barrier with prejudice and that’s why we are here today because Humber College has gone beyond and they realized that if the nurses are not taught about this genetic disease how are they going to be nursing patients.”

Johnson, who is 91, says she will continue to share her knowledge about the disease, adding that she will be talking with Humber College students about what SCAO has learned over the years and that “sickle cell is not a black people disease, it’s a Canadian health problem.”

Meanwhile, for the first time, a group of Humber’s nursing students experience first-hand knowledge about the disease and worked with patients in Jamaica.

According to June Harris, nurse-in-charge of the Sickle Cell Unit, University of the West Indies, there are over 5,000 sickle cell patients in their database in Jamaica.  She said they are a clinic and research centre. “We do offer health maintenance visits to our patients, we do offer emergency care because we have a day care facility where we admit our patients just for the day to treat emergency.”

She adds that the students worked along with nurses at the hospital and clinics and were a part of an outreach program to Montego Bay where they were able to interact directly with sickle cell disease patients.