How to Increase Awareness Lanre Tunji-Ajayi. President/Executive Director; SCDAC/AAFC
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1 How to Increase Awareness Lanre Tunji-Ajayi. President/Executive Director; SCDAC/AAFC September 20 th 2014
2 SICKLE CELL DISEASE ASSOCIATION OF CANADA ASSOCIATION D'ANEMIE FALCIFORME DU CANADA (SCDAC/AAFC) Who We Are Created in 2012 as an effort to combine local associations across Canada, the SCDAC is committed to: Increasing awareness about Sickle Cell Disease (SCD) Enhancing methods of identification, diagnosis, and treatment towards improving the quality of life of affected individuals and their families The SCDAC/AAFC represents: Patients with SCD Parents, carriers, and families of patients with SCD Provincial, regional and municipal sickle cell organizations Health Care Professionals Educators & Advocates Community representatives 2
3 ABOUT SICKLE CELL DISEASE Anticonvulsant Drugs Sickle Cell Disease (SCD) or sickle cell anemia is a hereditary genetic disease characterized by the presence of abnormal crescent-shaped red blood cells. Although a disorder of the blood, SCD is a multisystem disease: Predisposition to life-threatening infant and childhood infections Severe bone pain from necrosis of the bone marrow Affects all vital organs of the body Stroke is seen in >10% of children and >25% of adults 3
4 ABOUT SICKLE CELL DISEASE Canada s ethnic diversity has resulted in SCD being one of the most frequent genetic disorders It is quickly overtaking other well known disorders as cystic fibrosis and hemophilia. It is estimated that individuals have sickle cell disease in Canada patients are currently being followed for SCD, half of whom are children Life expectancy of patients with SCD is reduced by ~25 years compared to normal population. Quality of life is also severely affected. 4
5 SICKLE CELL DISEASE: BURDEN OF THE DISEASE BURDEN to the Individual: 1. Frequent hospitalization resulting in reduced contribution to society 2. Absenteeism from work- inability to hold a steady job Anticonvulsant 3. Financial stress/mental Drugs health issues 4. Marriage breakdown- 95% of time especially in high-stress societies 5. Self confidence/ self esteem 6. Feelings of guilt as the cause of family breakup; parents stress etc. Burden to Family members especially the parents and siblings: Feelings of guilty/responsible for the patient s disease. Absenteeism from work- inability to hold a steady job Am. J. Hematol. 84: ,
6 SICKLE CELL DISEASE: BURDEN OF THE DISEASE Burden to the healthcare resources: Emergency Department visits, Inpatient days, ICU care, OR time. US study evaluated the cost of SCD care to be US$ per patient per month, and US $500,000 lifetime Anticonvulsant Drugs In Canada, without the provincial health coverage, one week`s admission in an hospital for a sickle cell episode known as a crisis may cost the patient approximately $15,000- $25,000 ( Non-ICU admission) In Canada, health care is provincial; and the various provinces are to be applauded for covering the health cost of their citizens. Am. J. Hematol. 84: ,
7 SICKLE CELL DISEASE: WHAT DO THE PATIENTS WANT? Cure: Bone Marrow Transplant is currently the only curative treatment for SCD, but is only available for a small minority of individuals and may have some side effects considered unacceptable to some. Dr. Kwaku-Ohene-Frempong of the Sickle Cell Disease Association of America says "gene therapy is the ultimate cure of sickle cell disease." 7
8 SICKLE CELL DISEASE: INCREASED AWARENESS In the absence of a readily available viable cure for all; there is a need for: Increased awareness among researchers: Research for a cure Increased awareness among the law makers: Policies and laws to support the disease Increased awareness within the community: 1. Preventative measures- to reduce # of new births 2. Fundraising to support programs and research Increased awareness among the medical & allied health professionals Improved care & treatment (disease modifying therapies-hydroxyurea, blood transfusion etc) Increased awareness among the individuals with sickle cell disease- Better management of health Charache, S., et al. (1995). "Effect of hydroxyurea on the frequency of painful crises in sickle cell anemia. Investigators of the Multicenter Study of Hydroxyurea in Sickle Cell Anemia." New England Journal of Medicine 332(20):
9 SICKLE CELL DISEASE: HOW TO INCREASE AWARENESS To achieve increased awareness among researchers; SCDAC and CanHaem must work closely with CIHR/ICHR To achieve increased awareness among law makers, SCDAC Anticonvulsant must continue to educate Drugs and lobby policy makers both at the national and provincial levels. To attain increased awareness among the medical and allied health professionals, SCDAC must work with medical and allied associations such as CMA, OMA, BPAO, CASW, CPA, CNA etc. To enhance patient/public awareness and knowledge, SCDAC must work closely with the patient community, the health care practitioners and the general community. 9
10 SICKLE CELL DISEASE:BENEFITS OF INCREASE AWARENESS Patient/Public Awareness- Outreach activities will expose more people to the disease with the resultant benefit of increased support for those living with hemoglobinopathies. Patients are Anticonvulsant empowered to advocate for themselves Drugs Improved family involvement in the care and management of the disease Reduction in the stigmatization and the shame culture that surround sickle cell disease Reduction in the number of births and deaths Reduction in the number of complications; marriage breakups etc. Better understanding and management of the disease by the patients will result in a new level of well being. 10
11 SICKLE CELL DISEASE:BENEFITS OF INCREASE AWARENESS Medical and Allied Health Care Providers: Increased access to medical and allied health professionals with enhanced understanding of the disease Anticonvulsant Drugs Patients having improved access to disease modifying therapies such as hydroxyurea, blood transfusion and iron chelation Improved psycho-social and physical health of patients Enhanced quality of life 11
12 SICKLE CELL DISEASE:BENEFITS OF INCREASE AWARENESS Researchers- Increased interest among researchers and young investigators Anticonvulsant Drugs Increased interest among pharmaceuticals to produce life enhancing drugs Eventual development of a cure in the form of a vaccine or a cure for SCD Law makers- Policies and laws favouring sickle cell disease 12
13 SICKLE CELL DISEASE: HOW CAN I GET INVOLVED Volunteer and/or join the member organization of the SCDAC in your province Raise awareness in your community- religious institution, work place, school Get familiar with your MPP and MP Advocate for a patient-centred care 13
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