World Birth Defects Day was started in 2015 by the World Health Organization. The day is celebrated every year on March 3 to raise awareness for congenital disorders and has now become a movement. This year the theme is “Many births defects, one voice”, and on this day, we recognise our collective voice in raising awareness for all congenital disabilities.
World Birth Defects Day mobilises resources and commitment to improving congenital disabilities surveillance, research, prevention and care. The priority is to increase the visibility of congenital disabilities and disseminate what is already known on how to prevent congenital disabilities and improve the health and quality of life of affected individuals.
What are congenital disabilities?
Congenital disabilities are defined as abnormalities in the structure or function of a person, which are present from birth. While some CDs are apparent at birth, e.g. cleft lip or palate, clubfoot, albinism, others may only manifest later in childhood, adolescence or later in life, such as Huntington’s disease and types of familial cancers.
Who do they affect?
CDs are a global problem and occur everywhere – but over 90% occur in low and middle-income countries, such as South Africa, where more than 95% of CD-related deaths occur.
Serious CDs may result in the death of a patient or disability and contribute significantly to the burden of disease. As countries develop and transition epidemiologically, infectious diseases are better controlled and eradicated, and chronic, non-communicable diseases increase. This reveals the previously hidden burden of CDs, which emerges as a health care issue, resulting in an increasing proportion of deaths and disability due to congenital disabilities – as other causes fall away. In industrialised countries such as the USA, UK, Australia etc., that have completed epidemiological transition, CDs are the leading cause of death in children. In South Africa, the CD burden remains hidden for longer due to the simultaneous burdens of new and emerging infectious diseases and established communicable diseases alongside the growing NCD burden.
What’s the problem?
The current lack of political commitment and accompanying resources in South Africa prevents the provision of appropriate and accessible medical genetic services for those affected by or at risk of a CD. In addition to competing health priorities, the lack of empirical data on the scale of the problem is a key factor in the absence of prioritisation of CDs as a healthcare priority. This lack of data prevents relevant, tailored services from being developed at a community level to treat those affected.
Modelled estimates indicate that just under 70 000 live births a year (almost 7%), or one in every 15 babies born, are affected by a CD.However, a recent study indicated that during a six-year period (2006-2014), only 13 252 CDs were reported, indicating underreporting via national surveillance of 98%. Reasons cited for this were several: poor compliance (quantity and quality), misdiagnosed and undiagnosed CDs due to inadequate clinical capacity, lack of training and coordination, and exclusion of the private sector.
Phoenix Healthcare Consultants (Pty) Limited strives to create awareness, education, participation and prevention in its quest to improve the quality of life!
DISCLAIMER
This blog does not constitute financial advice. The content is intended to provide information for educational purposes. We recommend that interested parties contact Phoenix at the contact details listed or their financial advisors for a comprehensive review and needs analysis followed by the required record of advice.”