Patients with blood disorders, including sickle cell disease and thalassemia, can access primary health care services at TAIBU Community Health Centre in Malvern.
At the first sign of pain, sickle cell sufferers now have a place to go where they could get prompt treatment and possibly return home without having to endure intense pain, suffering, complications or lengthy and often avoidable hospital stays or worse.
Hospital emergency staff do not have access to medical records and doctors are reluctant to administer drugs for pain, fearing the patient might be a narcotics addict. As a result, wait times to be treated could last as long as five hours.
In making the ground-breaking announcement at a celebration at TAIBU last week to mark World Sickle Cell Awareness Day on June 19, executive director Liben Gebremikael said a specialized family physician will be on duty on Tuesdays from 4 p.m. to 8 p.m. and on Saturdays from 9 a.m. to noon to see patients at the Scarborough facility at 27 Tapscott Rd.
“Most sickle cell sufferers don’t have a family physician and those who do have one don’t go to see them because most of the time they are told to go to emergency because their family doctors don’t know how to deal with them,” said Gebremikael. “Most people wait until they have a serious crisis before they access health services at an emergency department. Now, they can come here and get the services and support they need before a major crisis arises.”
Sickle cell disease is a life-threatening and hereditary blood disorder that causes malformation of red blood cells that become distorted when they transmit oxygen through the body while thalassemia is an inherited blood disorder in which the body is unable to process normal functioning haemoglobin. The hereditary ailments affect mostly people of colour.
Gebremikael also announced that TAIBU has collaborated with Scarborough Hospital to implement a new sickle cell crisis protocol in its emergency department.
“When sickle cell patients go to a hospital emergency department, they are often labelled ‘druggies’ and they have to wait lengthy periods before they are seen by a medical practitioner,” he said. “Under this new protocol, patients that identify themselves as sickle cell sufferers will be seen immediately, administered pain management medication and further assessed by a specialist.”
Dr. Larry Grossman, who spent nearly two decades at Scarborough Hospital before joining York Central Hospital as chief of staff, played a pivotal role in the establishment of the protocol.
“What has to happen is there has to be a better informal network of health care providers that includes walk-in clinics and community health centres where people can go when they first start to feel unwell and then if something happens and they obviously need emergency treatment, they will get a referral so they are not walking in cold off the street demanding drugs,” he said. “Hopefully that will make a difference. Right now, there is a tremendous amount of professional turf protecting and I think there is a whole culture shift that has to occur.”
TAIBU Community Health Centre is a non-profit organization providing comprehensive primary health care and health promotion programs and services to Malvern residents.
TAIBU emerged from the Black Health Alliance (BHA) after then Minister of Health and Long-Term Care, George Smitherman, announced in November 2005 that the government was increasing CHC satellite centres across the province to improve primary health care and strengthen communities. The BHA was instrumental in lobbying for a CHC to be set up in Malvern to serve the large, predominantly Black population in the Scarborough riding.
President of TAIBU’s board of directors, Floydeen Charles-Fridal, said sickle cell treatment and management – particularly in the adult community – is a priority for the centre whose new facility was opened in April 2011.
“We know that, until recently, there was no place to address this in a meaningful way,” she said. “So when adults who live with sickle cell disease are in crisis and end up in emergency, they are often stigmatized because there is the assumption they are substance abusers.”
To mark World Sickle Cell Awareness Day, TAIBU honoured 90-year-old Lillie Johnson who founded the Sickle Cell Association of Ontario in 1981. For the past three decades, the nonagenarian has dedicated most of her life to the education of “sicklers” and their families, health practitioners, policy makers, educators and government about the symptoms and implications of the hereditary disorder that affects mostly people of colour.
The first Black director of public health for Leeds, Grenville & Lanark District, Johnson’s sustained passion as a sickle cell advocate resulted in the province’s Ministry of Health and Long Term Care including sickle cell disease on the list of 28 genetic diseases for universal newborn screening in 2005.
Johnson came to Canada in 1960 to work for the Canadian Red Cross, which was looking for nurses for Ontario outposts. She was assigned to Red Lake which is nearly 100 kilometres from the Manitoba border. On arriving in Toronto, she was able to exchange that posting for one at St. Joseph’s Hospital.
She spent time at The Hospital for Sick Children where she pursued pediatric studies for her provincial registered nurses accreditation and also took a summer course in genetics that exposed her to sickle cell disease and its effects.
After retiring in 1988, Johnson volunteered with Canadian University Service Overseas (CUSO) in Jamaica, providing treatment and health information to residents in poor and disadvantaged communities. She later served on the CUSO advisory committee when she came back to Canada.
“We are honouring Lillie because she has made some significant contributions in the sickle cell arena,” said Charles-Fridal. “I also believe that we should recognize these people when they are still alive.”
BY RON FANFAIR