A call is being made for technology and data to be used to develop interventions to aid vulnerable groups across Jamaica, including those affected by lupus.
This comes from Kim Mair, chair of the Council of Voluntary Social Services (CVSS), the coordinating body for non-governmental organisations (NGOs) serving in the nation.
Mair made the observation while addressing the launch of Lupus Awareness Month on October 3 under the theme ‘LevelUP’.
The launch was organised by the Lupus Foundation of Jamaica (LFJ).
RECOMMENDATION TO ESTABLISH A REGISTRY COMMENDED
“We cannot become complacent but instead, activate more channels, capture more data, expand interaction across the globe, and adopt more innovative ways to serve our lupus community using data,” she said.
The CVSS chair commended the recommendation by the Lupus Foundation to establish a registry as she said this would accurately account for those who die from the disease.
“Too many cases are classified as dying from infections, renal failure or cardiovascular events and the true culprit of lupus is not named,” she pointed out.
The capturing and reporting of data serve to accurately attribute the loss of life to lupus, and the analysis of data supports lobbying for resources for research and treatment.
Mair urged collaboration with the LFJ for the formulation of policies to reduce imbalances in the health sector and social inequality among social groups.
She also underscored the importance of volunteering with the Foundation to ensure that no Jamaican impacted by lupus is left behind.
“Offer your time and talent to the Lupus Foundation of Jamaica to help improve the lives of lupus fighters and spread awareness of this cruel disease. Participate to help those impacted by lupus to be proactive, and empower them with the knowledge so that they can recover better,” she said.
“Let us give, while still advocating, and lobby for the government to provide a standard of health care to help our citizens not just to survive but enjoy a quality life by delivering aid and services that are accessible and cost effective,” she added.
ONE OF THE HIGHEST RATES OF LUPUS WORLDWIDE
During October, the LFJ will be having various activities to educate persons about lupus.
These include a virtual programme entitled, ‘Ask the Experts Live Q&A’ with special guest, Dr Susan Manzi, a medical expert and immediate past chair of the Lupus Foundation of America; campus awareness outreach programmes across tertiary institutions; a series of features on lupus warriors and Purple Fridays where everyone is encouraged to wear purple on that day in support of those affected by the disease.
Jamaica has one of the highest rates of lupus worldwide, with women and caregivers mostly affected. An estimated 6,000 persons are believed to be affected by lupus in the country. Eighty per cent of persons are diagnosed between the ages of 15 – 44 with 22 years as the average age at which a lupus diagnosis is received.
The disease is considered an important underlying cause of premature deaths, particularly among young people.