By Allan Jones
Pride Health Columnist
In 2008, the General Assembly of the United Nations declared sickle cell disease as a public health problem and one of the world’s foremost genetic disease, requiring heightened awareness, activism, diagnosis and management. The result of the resolution was the declaration of June 19th as World Sickle Cell Day to increase awareness of the condition all over the world.
In Toronto the recognition of World Sickle Cell Day this year, took the form of a two day conference at Humber College on June 18 and 19. It will be an annual event and comes as a culmination of years of lobbying by the Sickle Cell Association of Ontario (SCAO) to get Humber College to include courses on sickle cell disease in their nursing program.
Tiney Beckles, SCAO board member, retired nurse and clinical instructor of the practical nursing program at Humber College, brought the concerns of SCAO to Jason Powell, Dean, School of Health Sciences, he liked the idea, and now is in the process to make Humber College the first Canadian educational institution to attach to sickle cell disease the importance it deserves, to be placed on the college’s curriculum. This will go a far way in bringing greater care to a very devastating disease that affects all races. It is not a Black disease, it however affects Blacks at a higher rate than other ethnicities.
Sickle Cell Disease is a genetic disorder and is not contagious. Both parents must carry the abnormal gene for a child to get the disease, but how many of us bother to check to find out if the person we plan to marry or have a child with, carries the sickle cell gene? And what about you? Do you carry the gene? All of this can be revealed through a simple blood test, just ask your family doctor, or visit one of our community health centres like TAIBU in Malvern or the Black Creek Community Health Centre at Jane and Wilson. If you have ever seen someone with the disease in a crisis state in severe pain, you would think twice before taking the chance of having a child who may have the full blown disease. It is a very painful disease.
All babies born in Ontario since 2005 are tested for sickle cell disease at birth. The same process started in British Columbia last year, and the Nova Scotia government stated this year, that they are in the process of implementing a new born screening program soon. But what about the other seven provinces and territories? This new born screening program is critical, since it allows children to be monitored from birth and all the steps necessary to lead a “normal” life can be in place.
What can we do as individuals to ensure that sickle cell disease gets the political and medical attention it deserves? We can talk to our politicians, get involved in the political process, and let these politicians know your vote and support, is dependent on them taking steps to advance the welfare of sickle cell patients. The easiest thing though, is to articulate for these improvements wherever you are. We have thousands of individuals working in the Canadian health care system as health care workers, PSW’s, nurses, pharmacists, doctors and many others. In fact some of you reading this article, have the power to institute greater support for sickle cell programs in your company or institution, are you doing it? Teachers, how about educating your principal, superintendent, trustees, and others in the school system? This could end the discrimination that many young students with sickle cell disease suffer when they cannot do simple tasks like running around the gym at school. Have you ever used the opportunity presented in one on one chats with your boss, or decision makers, about steps that can be taken to alleviate the suffering that individuals affected by sickle cell disease have to go through? Just like Tiney Beckles interacted with her Dean at Humber College led to plans to start the teaching of sickle cell disease at Humber, you can make changes wherever you are….. Just do it!
Allan Jones is a Health Promoter and Broadcaster. He can be reached at firstname.lastname@example.org.