The Case for Closing the Gap in kidney health in ACB communities.
By Joy Osiagwu.
Friday 19 August 2022
What information do you have about your kidney health? The Canadians of African Descent Health Organization (CADHO) had a webinar on kidney health for the African Caribbean and Black communities (ACB) to find valuable information on the care of the kidney, a vital organ in the body.
The speaker, Dr Istvan Mucsi, a nephrologist and Associate professor of Medicine at the University of Toronto, spoke extensively about his work at the Ajmera Transplant Centre, University Health Network, Toronto.
In his presentation captioned ” Health inequities in ACB Communities: The gap in kidney health,” Dr Mucsi focused on care for the kidney, especially for ACB community members with high-risk factors. In addition, he talked about understanding and reducing ethnic-racial inequality in access to kidney transplants, living donor transplants, and improving kidney transplant education in Ontario.
Mucsi also gave insights into supporting the psychosocial and mental health needs of kidney transplant candidates and recipients.
He notes that research proves that patients who belong to groups marginalized by race and ethnicity (African, Caribbean, and Black, South or East Asians) in Canada are 50-70 % less likely to receive a living donor kidney transplant than white patients.
While explaining that treatment is available for kidney infections, he emphasized that kidney disease has no warning signs in the initial stages. Nevertheless, Mucsi advised participants to pay close attention to their kidneys’ health as infections can progress to kidney failure, a life-threatening condition.
He dwelt on managing kidney disease for patients with risk factors such as Diabetes, Obesity, kidney disease in the family, heart disease, High Blood Pressure, and smoking.
Dr Musci says a blood test and Urine test would determine if a person had kidney disease. Early detection can save your life, he says.
Management for patients with risk factors for kidney disease
- Keep track of your blood pressure at home-target for many:120-130/80-85
- Keep track of your blood sugar if you have diabetes-target for many:6-10
- See your doctor (s) regularly (nurse, family doctor, specialist)- ask questions, and have your blood and urine evaluated every 6-12 months.
- Take your medication as suggested by your care team and take care of your health (physical and mental).
The presentation addressed kidney care pathways in Ontario, the potential gaps, and the proportion of patients with no living donor identified and the portion of patients willing to accept an offer of living donation.
What patients want but frequently do not get
Dr Mucsi informed that often, patients require open, honest, and collaborative relationships with their care team and healthcare system but hardly get these needs met.
A person-centered approach and respect for health-related preferences and perspectives are also lacking.
Judgment-free interactions with the care team, as required, are not always the case as participants often feel judged, leading to non-disclosure of potentially valuable information.
The desire for more excellent representation and diversity within the healthcare system remains an essential need as participants felt more comfortable with HCPs from the ACB community.
Next Steps for ACB kidney health
Dr Istvan Mucsi called for more culturally tailored educational resources focusing on culturally appropriate kidney health and treatment educational resource hubs. For example, the resource corner can provide literature on early – kidney risks, risk prevention, risk management, prevention of progression and advanced kidney failure, and treatment options.
Mucsi also gave a link to the ACB Health YouTube channel with information about various organs in the body. (https://www.youtube.com/channel/UCFFz8hoKUxTYltN1aX8nghA).
The kidney health education group at the Ajmera Transplant Centre aims to ensure equitable access to the best transplant care for all Canadians irrespective of racialized status—starting with LDKT and live kidney donation.
“To redesign social systems, we need first to acknowledge their colossal unseen dimensions,” says Dr Istvan Mucsi.
“Mucsi studies potentially modifiable factors underlying inequities in the utilization of live donor kidney transplant among patients from racialized communities.” (“Emory Health Services Research Center – School of Medicine”) The work is done in partnership with African, Caribbean, and Black, Chinese, and South Asian community organizations and patient partners and professionals from those communities. He employs both quantitative and qualitative research methodologies. These research projects inform the co-development of educational resources and clinical pathways supporting those communities to explore treatment options for kidney failure. He is the lead of the education pillar of the “Enabling Access to Kidney Transplantation” provincial (Ontario) strategy led by the Ontario Renal Network.
His other research program is focusing on physical and emotional symptoms that are important determinants of quality of life of patients with kidney disease and solid organ transplant. He is validating tools developed by the Patient Reported Outcomes Measurement Information System (PROMIS®) and integrating these tools in the clinical workflow to develop clinical response pathways for better patient centered care.
Mucsi is a member of the UHN Transplant Outcome Research Group and the UHN PROM/PREM Clinical Advisory group. He is an expert advisor of the “Data innovation platform” of the Canadian Donation and Transplant Research Program and the European Cooperation in Science and Technology.
Fadia Jerome-Smith, a founding member of the ACB YouTube Channel on Kidney health programming at the University Health Network (UHN), shared her life-changing story.
She tells of her journey of discovery about kidney disease, the fears, and challenges of finding a donor and the unforgettable sacrifice of her sister who became a living donor of one of her kidneys to Fadia.
The narrative about the family support system from her husband to her extended family and the care and words of encouragement from the medical team that conducted the surgery and how she and her sister are sharing the joy of life today was heart-warming.
She left the participants at the webinar with lessons of hope, resilience and a grater need for community engagement for more advocacy about organ health and donation.
The CADHO webinar is a monthly event designed to share valuable health information with the ACB Community. The mission and vision of the organization are to improve ACB healthcare and health outcomes through transformation, equity, and community empowerment in Ottawa and beyond.
Joy Osiagwu is a broadcast journalist with over two decades of experience in the broadcast industry in Nigeria and North America. Osiagwu covered activities of the Nigeria High Commission in Ottawa and the Nigeria Mission to the United Nations in New York for a decade for the Nigeria Television Authority (NTA).
She obtained a master’s in business administration (MBA) and Media Leadership from the University of Cumbria in the United Kingdom. Osiagwu also has a post-graduate diploma in Broadcast Performing Arts from the Columbia Academy, Vancouver, British Columbia, Canada. In addition, she is a Media Consultant.