WORLD SICKLE CELL DAY ADDRESS PRESENTED BY THE NATIONAL COORDINATOR OF THE ASSOCIATION OF PEOPLE LIVING WITH SICKLE CELL DISORDER ON 19TH JUNE 2024

PROTOCOLS:

Each year, on June 19, countries all over the world commemorates World Sickle Cell Day, which was initially presented as a resolution by the United Nations in 2008. The aim is to recognized sickle cell anaemia as a public health challenge and proffer solutions about this genetic conditions, particularly through genotype education, sensitization and awareness.

This disease can occur in any race or ethnic groups, but it is most common with people of Hispanic and African decent. According to a survey by the Texas Children Hospital USA, About 300,000 to 400,000 babies are affected yearly by sickle cell disease worldwide.

The World Sickle Cell Day for us in the Association of People Living with Sickle Cell Disorder (APLSCD) is to bring together patients, families, healthcare professionals, government institutions, and communities to promote understanding and drive progress in the fight against sickle cell disease. Our organization is dedicated to raising awareness, promoting research, and supporting individuals affected by sickle cell disease.

It is our purpose today to educate the public on the adverse effects of genotype incompatibilities, and ensure that people get tested for genotype, especially intending marriage couples.

In Anambra State, our organization has been able to drastically reduce the flagrant births of sickle cell children through holding our state government accountable in policy making and decisions. Few years ago, we widely celebrated the enactment of the Anambra State Sickle Cell Disease ( Control and Eradication) Law 2019. This feat with the cooperation of the then Anambra State 6th Assembly through the sponsorship of Hon. Charles Ezeani, falls in line with our firm believe of utilizing every political will to fight sickle cell disease.

Through the intervention of Governor Charles Soludo, about 71 SCD persons became free beneficiaries in the health insurance scheme, under the Anambra State Health Insurance Agency. This move reduced the burden of medical bills that SCD individuals and their families have to pay in the cause of getting treatment. It is our hope that these benefits are also extended to cover all SCD individuals in Anambra State whose numbers run in the hundreds. Other key sponsors and brands can as well choose to register persons living with sickle cell disease to enjoy free health insurance. This is service to humanity!

As an organization poised to guarantee the wellbeing of vulnerable sickle cell children, we are faced with certain challenges that inhibits our progress which includes the need for a permanent and central sickle cell center in Anambra State. The moral, psychological, emotional, and financial bearing needed for the management and rehabilitation of vulnerable sickle cell children is daunting. We are appealing for support to enable us acquire a piece of land to build a befitting structure for maximum convenience and productivity.

Other needs as regards to the Sickle Cell Orphanage and Underprivileged Home includes, mobility to convey us from place to place; drugs and other medicare equipments; foodstuffs and beverages; clothing of varied ages; educational materials etc. Our vocational and skill acquisition center which is directly opposite the orphanage home also needs office and training equipments like sewing machines, clippers, laptops. We used some of the equipments donated by Chief Sir. Ikenna Okafor (IDE Akweze) to empower those who had successfully completed their trainings.

APLSCD is eager to utilize every opportunity and assistance from well-meaning benefactors for the growth and empowerment of vulnerable sickle cell children, likewise for the total eradication of sickle cell disease from our society. We are eternally grateful to our benefactors and ministry of health led by Dr. Afam Obidike for believing and working with us through thick and thin.

In a remarkable way, our special recognition goes to our proud partners in this year’s program, the Agulu CDS group from the National Youth Service Corps. The CDS group threw their weight behind the success of this occasion, making sure that they mobilized themselves to spread the sickle cell awareness through electronic and conventional means.

With an increasing sense of duty, I owe gratitude to the Anambra State Governor, Prof Charles Soludo and wife, Dr Mrs Nonye Soludo. Just few months ago through the office and intervention of the Commissioner for Local Government, Chieftaincy and Community Affairs, Hon Tony-Collins Nwabunwanne, our Sickle Cell Orphanage and Underprivileged Home Agulu, was officially endorsed to receive a monthly subvention from the local government. This has quite relieved us from certain financial obligations.

To our dear friend and brother in humanitarian service, Sir Paul Chukwuma (Onwa Umueri, Onyechinazo) The Pro-Chancellor, Olivia University Bujumbura Burundi, it has been a blissful experience knowing you. You came to our aid and secured a 4 bedroom flat to ease our accommodation problem to resettle some occupants from the sickle cell home when it became too chocking due to want of space. We recall the times you made donations of cows to enrich our diet with protein, having discovered the importance of such nutrients in building our body system and offsetting heavy medical bills when emergency situation arise.

To all our benefactors whose names I cannot mention here, you hold a place of deep regard and honour in our hearts. We will always cherish your support and strength. Like strong pillars in times of turbulence, your love and charity is what keeps us up and going. May God replenish you all abundantly.

We appreciate all your donations and sacrifices for our own good. We implore you to keep reposing your trust and believe in us.

Finally, together we can create a powerful indomitable human spirit where sickle cell disease would become a thing of the past.

Thank you very much for your attention, as I wish us all Godspeed towards our various destinations. May God keep us safely till we meet again by this time next year.

I remain yours with sincerity,

Aisha Edwards Maduagwu,
National Coordinator,
APLSCD and
Director,
Sickle Cell Orphanage and Underprivileged Home Agulu.
08033223007.