FEATURE ARTICLE

Babs AjayiFriday, February 4, 2011
Babsajayi@yahoo.com
Gatineau, Quebec, Canada

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THE SICKLE CELL BILL OF LIFE AND HOPE

r. Kirsty Duncan, Ojo Tewogbade, Honourable Gerard Kennedy, Lanre Tunji-Ajayi, Unita Louis and Mr. Joseph Bodun Macaulay have one thing in common: the desire to defeat Sickle Cell and ensure that sufferers live normal life like the rest of us. And that is the beginning of Bill C-605, a bill that has brought out the very best in group work, networking, collaboration, community spirit and the fire to fight back and overcome as one people bound by the Canadian spirit of service, volunteering, and generosity.


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Bill C-605 was introduced to the media at the Charles Lynch Media Room on Parliament Hill in Ottawa, Canada by two distinguished members of the Canadian Parliament (MPs), Dr. Kirsty Duncan and Hon. Gerard Kennedy. Bill C-605, described as "an act respecting a Comprehensive National Strategy for Sickle Cell Disease and Thalassemic Disorders" is seen as the hope Sickle Cell and thalassemic sufferers have been waiting for; an opportunity for well informed hospital emergency care, admission, access to proper drugs, specially trained nurses and doctors with good understanding of the disorders, support, proper integration into the work place and decent life for sufferers. Dr. Duncan introduced Bill C-605 to the Canadian Parliament with concerns about "the challenges faced by children and adults living with these inherited blood disorders."

She stressed the importance of the need for the Canadian Minister of Health "to initiate discussions with the provincial and territorial health ministers to develop comprehensive patient care throughout the life cycle, develop national standards regarding universal screening, develop centres of excellence for both pediatric care and adult care, assess best practices for patients to succeed at school and in the workplace, develop information for medical education to prepare health care workers to meet the needs of Canada's diverse populations, develop adequate clinical guidelines and prompt pain management for patients in crisis, establish a program for funding to advocacy groups, and recognize June 19 as Sickle Cell anemia awareness day in Canada."

Sickle Cell is inflicting tremendous pains, hardships, youth mortality and ravaging families around the world. Sickle Cell sufferers go through excruciating pains that can last for weeks and make their lives miserable if help immediately. Once the immune level of a sufferer is low and the blood cell becomes sickle, the need for help and treatment becomes very urgent and a matter of life and death. We have lost so many young men and women to Sickle Cell, many at the prime of their lives and well after painful struggle through school, college and university. Many people can relate to this. This was the case with Bimbo Omotayo who earned a degree in English and another in law. Omotayo then attended the Law School and worked for just a few years as an attorney before he died due to complications from Sickle Cell anemia. Bimbo died just a few months to his wedding. It is painful to see young men and women go through so much hardship as a result of Sickle Cell and not able to find help in time of need. Finding help close to home in hospitals at those crucial times and moments when the pains and crisis become unbearable is very important to helping people suffering from Sickle Cell.

The Sickle Cell sufferer wants to contribute to the community and wish to work and do other things like the rest of us. With the passage of Bill C-605 a sufferer will be able to secure support in the work place that will provide opportunity to work from home, be allowed to work flexible hours, and allowed work with income averaging, which will make it possible for a sufferer to work for nine months while avoiding the terrible cold of winter that could expose a sufferer to medical crises. Drs. Robert Klaassen and Allan Tinmouth spoke of their work and the regular need to constantly manage patients, which prevents the patients from ending up in the emergency. Dr. Tinmouth observed that an ongoing care must be recognized by hospitals and health management authorities. The medical practitioners noted that a standardized process of treatment, support and care is urgently needed in order to take advantage of research work relating to care and treatment of sufferers. Dr. Klaassen who is a specialist at the Children Hospital for Eastern Ontario (CHEO) also expressed support for Bill C-605. During the question and answer session, Dr. Robert Klaassen observed that only the Toronto General Hospital provides care for Sickle Cell sufferers in the whole of the Greater Toronto Area (GTA)! It is only CHEO that provides care for children with Sickle Cell in the National Capital Region (NCR), and these are children up to age eighteen. Once these children turn eighteen they have no where else to turn to for help and care. He therefore stressed the need for more hospitals with doctors and nurses who have expertise in the care of Sickle Cell sufferers. It was pointed out that there is only one doctor in the National Capital Region (NCR) who cares for sufferers, but with little medical resources relating to the care of Sickle Cell sufferers to make his work fruitful.

Mr. Brent Louis, a Sickle Cell sufferer recalled months he spent in hospitals. He recounted repeated hospitalization, every two to three months with an average stay of more than two weeks. Mr. Joseph Bodun Macaulay, the president of the Sickle Cell Foundation of Canada - Eglington Community Support Group stressed the need to pass Bill C-605, as the entire Sickle Cell Community, sufferers, care providers, and families believe the bill will address all the concerns, problems, anxieties and hardships affecting everyone involved. Mr. Ojo Tewogbade, who is an officer of the Toronto Police Force and a member of the Sickle Cell Foundation of Canada - Eglington Community Support Group whose daughter is waiting to receive kidney transplant spoke on what the bill will achieve and the support the Sickle Cell Community is receiving from the Step By Step organization. On her part, Mrs. Lanre Tunji-Ajayi, the Executive Director of the Sickle Cell Awareness Group of Ontario lamented the absence of a comprehensive care for patients, particularly those outside Toronto.

The Sickle Cell Foundation of Canada - Eglington Community Support Group, the Sickle Cell Awareness Group of Ontario (CSAGO) and Step by Step, the Organ Transplant Association teamed up Dr. Kirsty Duncan and Gerard Kennedy and several other interest groups to organize the Sickle Cell Touch of Life Run from February 1, 2011 to February 17, 2011. The five hundred (500) kilometers run will take the touch across many cities. The run commenced from the Parliament Hill and will move on to Stittsville, Perth, Brockville, Kingston, Belleville, Trenton, Oshawa, Pickering, and Toronto. This will help create awareness and raise funds and support as part of the Sickle Cell awareness program. The Sickle Cell Awareness Group of Ontario (SCAGO) identified the need to improve accessible and comprehensive care for adult patients living with Sickle Cell Disease as an urgent need and advised that "a more extensive network of satellite comprehensive programs" be introduced to ameliorate the hardships and difficulties of adult sufferers. Additional resources, SCAGO pointed out in its press release, are needed at regional health centres to provide emergency and on time care for adult sufferers. SCAGO pointed out that with these centres in place Canada will be able to prevent untimely deaths of otherwise useful, resources and young men and women who suffer from Sickle Cell anemia.


Member of Parliament (MP) Dr. Kirsty Duncan and MP Gerard Kennedy


Standing in the front row from left and holding the Touch of Life are Mr. Joseph Bodun Macaulay, MP Kirsty Duncan, MP Gerard Kenedy, Mrs. Lanre Tunji-Ajayi, Ms. Unita Louis, some other supporters of the program


Standing from right are Dr. Allan Tinmouth, Dr. Robert Klaassen, Don, Mr. Bodun Macaulay, and Dr. Duncan

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