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Renewed efforts to tackle sickle cell anaemia

By Gordi Udeajah (Umuahia), Michael Egbejule (Benin City) and Stanley Akpunonu (Lagos)
28 June 2018   |   2:12 am
President, American Society of Haematology (ASH), Dr. Alexis A. Thompson, during a webinar to mark the World Sickle Cell Day, highlighted that one of the greatest hurdles we face in curbing the heartbreaking rate of mortality caused by sickle cell disease in sub-Saharan Africa is lack of awareness of the condition....

sickle cell

*American coalition seeks newborn screening to reduce mortality
*Foundation donates kits in Edo, tasks govt on 24hrs Medicare service
*Abia says bill on ‘Blood and Genotype’ will check incidence

Determined to reduce deaths caused by Sickle Cell Disease (SCD) in developed and developing countries, medical experts have called for more emphasis on Newborn Screening (NBS).

President, American Society of Haematology (ASH), Dr. Alexis A. Thompson, during a webinar to mark the World Sickle Cell Day, highlighted that one of the greatest hurdles we face in curbing the heartbreaking rate of mortality caused by sickle cell disease in sub-Saharan Africa is lack of awareness of the condition and the simple, relatively inexpensive interventions that can save lives. “It starts with early recognition, ideally through newborn screening,” he said.

Thompson continued: “Our hope is that by using these videos to dispel myths and tell parents that SCD is manageable, we can encourage families, communities and public officials to screen newborn children for sickle cell disease so that they can receive critical, accessible treatment that will help them survive.“The videos highlight efforts currently underway in Ghana, a country with a high incidence of SCD, to help dispel myths and eliminate the stigma of the disease. The videos show families the steps they can take to ensure that children born with SCD are diagnosed promptly so they can get proper medical care. In Ghana, newborn screening and educational efforts have significantly decreased mortality rates”

The webinar was held with global health experts, the media, and Sickle Cell Disease Coalition partners to raise awareness about the disorder. The webinar is titled: “Global Action: Improving Health Outcomes for Sickle Cell Disease.”The American Society of Hematology is the world’s largest professional society of hematologists dedicated to furthering the understanding, diagnosis, treatment, and prevention of disorders affecting the blood. The Society has led the development of hematology as a discipline by promoting research, patient care, education, training, and advocacy in hematology.

Managing Director (MD), Sickle Cell Foundation of Ghana, Kwaku Ohene-Frempong said: “Unfortunately, despite the work we’ve done in Ghana and across Africa, much remains to be done to reduce infant mortality — 90 percent of children with SCD in resource-poor countries will not survive to adulthood,”He continued: “In Ghana, we’ve seen that simple public health measures, especially newborn screening, help children lead more normal lives. In the first 10 years of newborn screening, we made dramatic improvements in reducing sickle cell-related childhood mortality.”

Meanwhile, the Edo State Head of Service, Mrs. Gladys Idahor has expressed the state government’s resolve to continue to provide adequate care and welfare to people living with sickle cell disorder in the state.Idahor who also commended the Board Chairman, Edo State Sickle Cell Centre, Prof. Caroline Omoti for her initiative in repositioning the Sickle Cell centre through various innovations introduced to ensure effective management of the centre, assured that government would continue to fund and equip the sickle cell centre in Benin City to enable it meet its responsibility.

Represented by Permanent Secretary, Edo State Ministry of Women Affairs and Social Development, Mrs. Stella-Maris Imasuen made the remark during the presentation of Selfcare tool kits to people with Sickle Cell disorder in Benin City by the Tonymay Foundation.Imasuen said the centre has become a centre of excellence following the effective management of the Sickle Cell sufferers by the Board Chairman and her team.Chairman, Tonymay Foundation, Barrister Andrew Otokhina lauded the Edo State Government for providing medical care and a centre for Sickle Cell Sufferers in the State.

Also, Abia State governor’s wife, Nkechi Ikpeazu, has explained how the state passed Bill on Blood and Genotype would check incidence of Sickle Cell disease in the state when it is signed into law saying that from the onset the Sickle cell disorder causes many other diseases that wreak havoc not only the victim but also on his or her family. She attributed the cause of the avoidable disease to poor information and not taking due precautions by intending marriage couples.She commended the state house of assembly for passing the bill and urged her Governor Okezie Ikpeazu to sign it into law.

According to Mrs. Ikpeazu, the passed Bill has shown the commitment of the state government and its agencies towards realizing a sickle cell free state.The said bill makes it mandatory for intending marriage couples to first go for their blood tests to know their blood groups and genotypes to ensure their compatibility as marriage partners.

Meanwhile, Otokhina who applauded Governor Obaseki for his commitment and dedication to the health and welfare of Sickle Cell Sufferers in the State appealed for 24 hours service for the Sickle Cell Centre.Otokhina presenting the medical relief malaria to the Sickle Cell Centre advised patients to always be hydrated, never allow themselves fall into malaria crisis, avoids stress and infection among children in a bid to live a normal life.He said sickle cell is not a disease but a disorder and can be managed by medical professionals warning sufferers to desist from patronizing unqualified medical personnels in private hospitals.

Chairman Edo Sickle Cell Board, Prof. Caroline Omoti who appreciated the donation by Tonymay Foundation appealed for more attention to the centre through allocation of funds, as well as education and research to assist sufferers in provision of sustainable medical care.Omoti disclosed that a total number of patients at the centre revealed a steady increase in the number of patients from 4,000 in 2014 to 7,573 in 2017 with an increment of 4,159 patients.

Meanwhile, Mrs. Ikpeazu who pointed that the law places a huge responsibility on the populace especially would-be parents, to take essential steps to ensure they do not bring children into this world to suffer, challenged parents and other stakeholders especially those in the health sector to play their vital role of ensuring that the provisions of this law are complied with in their medical outfits.She renewed the commitment of her founded and facilitated non governmental organization called Vicar Hope Foundation and its partners to do the needful on the disease through their medical facilities, sensitization and counseling.

“We already have two sickle cell care centres. Our dream is to place a centre in each Local government area and ward and domesticate the impact at the grassroots. Our state lawmakers have shown that they are real partners in progress in this regard.”Sickle Cell Disease (SCD) is an inherited form of anemia, a condition in which there is not enough healthy red blood cells to carry adequate oxygen throughout your body. Normally, the red blood cells are flexible and round, moving easily through your blood vessels. In sickle cell anemia, the red blood cells become rigid and sticky and are shaped like sickles or crescent moons. These irregularly shaped cells can get stuck in small blood vessels, which can slow or block blood flow and oxygen to parts of the body.

However, a recent statics has shown that, this year, approximately 300,000 babies around the world will be born with SCD with the expectations 30 percent increase of people living with the ailment. In Africa, 1,000 children are born every day with the disorder with more than 75 percent of the global burden of the ailment occurs in sub Saharan Africa. In resource poor countries, low survival rate are recorded as more than 90 per cent of children living with SCD do not survive to adulthood.

Meanwhile, The United Nations (UN) has designated SCD as a global public health problem. While simple public health measures such as newborn screening, vaccinations, and early interventions have been proven to greatly improve childhood survival in several countries, including the United States, SCD continues to be a major global public health issue. It remains a major killer of infants and children in the developing world, particularly in sub-Saharan Africa, where an estimated 50–90 percent of infants born with SCD will die before their fifth birthday.

In United States (US) and most developed nations, SCD mortality rate has been reduced to less than one percent as a result of newborn screening programmes but in developing countries especially in Nigeria lack of newborn screening programmes result to increased prevalence of the scourge. In 2016, the Society founded the Sickle Cell Disease Coalition to amplify the voice of the SCD stakeholder community, promote awareness, and improve outcomes for individuals with SCD globally. ASH has made conquering SCD around the world a top priority and is leading efforts to translate research into cutting-edge therapies and cures, increase access to care, educate health care providers, and encourage policymakers to make strides in universal screening and care efforts.

The coalition is to amplify the voice of the SCD community, promote awareness, and improve outcomes for individuals with SCD. The SCDC is focused on promoting research, clinical care, education, training, and advocacy while providing a platform to encourage stakeholders to work together to develop and implement important projects and activities that will ultimately help the SCD community and improve outcomes for individuals with the disease.