In 2002, the United Nations declared June 19 World Sickle Cell Day in an effort to draw attention to this inherited, life-long, chronic blood disorder that afflicts millions globally. Sickle cell disease (SCD) does not have a cure.
In 2009, former City of Toronto Mayor, David Miller, declared June 19 World Sickle Cell Day. This June there are a number of elements that draw our attention to sickle cell disease, not the least of which is a coroner’s inquest into the May 2010 death of 22-year-old Emmanuel Osae, while he was an inmate at a Toronto correctional facility.
I was able to attend two mornings of the coroner’s inquest, which included the touching testimony of Emmanuel’s mother, expert testimony of clinical hematologist, Dr. Larry Grossman, and some of the closing arguments from the participating parties.
Emmanuel’s story is one of a young man born in Ghana who, within his first year of life, became very ill. His mother took him to the hospital and blood tests revealed he had sickle cell disease. A few years later, Emmanuel’s mother, Joyce, came to Canada leaving her son in Ghana with family. Several years later, Joyce was able to bring her son, then a young teenager, to Canada.
While in Canada, although not frequently, Emmanuel would become sick requiring hospitalization. Joyce tells us of one evening after work coming home to find her son in his room bent over on the floor, fatigued and experiencing acute back pain.
With sickle cell disease the red blood cells are abnormally shaped, rigid and sticky. These cells are fragile, tend to rupture, are poor carriers of oxygen and often get stuck in small blood vessels which can slow blood flow and the delivery of oxygen to body tissues causing organ and tissue damage, fatigue and pain. The behaviour of sickle cells can be the cause of episodes of severe pain commonly referred to as a sickle cell crisis.
After a number of years in Canada, Emmanuel fell afoul of the law and was incarcerated. On May 17, 2010, in the days leading up to his trial, Emmanuel developed a bad cough which worsened such that the judge adjourned the trial due to Emmanuel’s health.
Emmanuel was returned to the correctional facility and his condition continued to deteriorate. He was transferred to Mount Sinai Hospital’s emergency department on May 22 where he was admitted and treated but, unfortunately, two days later he died.
The autopsy report indicated he died of complications of sickle cell disease.
Any time someone dies while in custody, a coroner’s inquest is triggered, the goal of which is to identify any measures that might be undertaken to prevent future deaths from occurring under similar circumstances. In Emmanuel’s case, the medical staff at the correctional facility were aware of Emmanuel’s sickle cell status, however, some people have concerns regarding the timely assessment and treatment of his worsening health while at the correctional facility prior to being transferred to the hospital.
Attending this inquest reminded me of the Sophia Bulgin inquest. Bulgin was a 14-year-old girl with sickle cell disease who was seen in the emergency department at The Hospital for Sick Children with a gall bladder problem and died hours later. That inquest produced a number of recommendations not the least of which was to address the education and training of nurses and physicians regarding sickle cell disease. There are many people including the Osae family, the Sickle Cell Association of Ontario (SCAO) and the sickle cell community, that are hoping the jury will support recommendations that will improve the assessment and management of people living with sickle cell disease within correctional facilities.
Other recent sickle cell initiatives include the re-introducing of the private member’s bill, the Sickle Cell and Thalassemia Care Ontario Act, on June 7 by Mike Colle, MPP for Eglinton-Lawrence. The purpose of the Act is to establish a provincial body called Sickle Cell and Thalassemia Care Ontario in order to promote awareness and advocate for individuals living with these disorders. It also proclaims June 19 as Sickle Cell and Thalessemia Awareness Day in Ontario.
A number of groups including the SCAO, the Sickle Cell Awareness Group of Ontario, the Sickle Cell Miracle Network, Canadian Blood Services, One Match (Marrow and Stem Cell) and TAIBU Community Health Centre are commemorating World Sickle Cell Day at TAIBU on June 19.
This year, for the first time, Camp Jumoke will be able to expand and provide several weeks of camping experience for children with Sickle Cell Disease and recently The Scarborough Hospital, working in partnership with TAIBU CHC and the SCAO, developed an emergency department protocol to provide efficient and effective care when they come to the hospital. The sickle cell community is hoping there will be an effective Sickle Cell Disease protocol established in all hospitals across the province.
Today, more than ever before, thanks to the relentless work of the community leaders within the sickle cell community, there is greater awareness, education and soon to be public health policies and protocols that will improve the quality and length of life of people living with Sickle Cell Disease across Ontario and Canada.
Dr. Christopher J. Morgan is the director of Morgan Chiropractic & Wellness, an interdisciplinary health centre in Toronto, and the President of the Black Health Alliance, a network of community organizations, health professionals and community members working in partnership to advance the health and well-being of the Black community. He can be reached at 416-447-7600 or email@example.com