The Scourge of Sickle Cell Disease: New Government Action

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Caption: (from left to right):  Congo-Brazzaville Minister of Health and Population Jacqueline Mikolo, Ambassador of the African Union to the United States, H.E. Dr Arikana Chihombori-Quao, and Congo-Brazzaville Minister of Higher Education, Bruno Itoua. Photo: Chriss Portella

New government partnerships offer progress in the fight aganst the debilitating and deadly Sickle Cell Disease.

Minister of Health and Population Jacqueline Mikolo and the Director of the Sickle Cell Center of Brazzaville Congo arrived in Washington D.C. to meet with the U.S. National Institutes of Health and with leaders at the Howard University Center for Sickle Cell Disease (SCD) to discuss the serious problem of sickle cell disease worldwide.

The Congolese Delegation, including the Minister of Higher Education, Bruno Itoua, also met with the Ambassador of the African Union to the United States, H.E. Dr Arikana Chihombori-Quao, to focus on funding. The AU Ambassador, a Ghanaian national, is very familiar with health, as a family medicine doctor and previous Chair of the African Union-African Diaspora Health Initiative -- where she was involved in mobilizing African Diaspora health professionals to address healthcare needs of the African continent.

The meetings build on many years of exchanges and advocacy about sickle cell disease between the United States and the Congo, explained Minister Mikolo.

“Sickle cell disease is a public health issue in the Republic of Congo,” said Minister Mikolo, noting a rise in the disease within the population.

SCD is being called a “silent epidemic” because of its lack of attention by government and researchers to date.

“We are doing something major to combat this ‘silent epidemic’,” says the Director of the Howard University Center for Sickle Cell Disease, James G. Taylor.  A medical doctor, Taylor has great hopes for this partnership to finally raise the profile of SCD and eradicate the disease.

Currently, SCD affects up to 8,000 patients in the Congo every year. Cases have also been found in Mediterranean countries such as Greece, Turkey and Italy; India; and Hispanic regions in South and Central America and Mexico.

1 in 10 African Americans carry sickle cell traits. 

“It doesn’t matter your skin color but where your ancestry is, since this is a genetic disease,” explains Taylor.

SCD hits close to home at Howard.  University President Wayne Frederick, a medical doctor, has a mild form of SCD.

The partnership between the Howard University Center and the Congo Assistance Foundation, an NGO established by the First Lady of the Republic of Congo, Antoinette Sassou Nguesso, was formed in 2016. The partnership aims to explore how to better serve the population of Congo and other parts of the world facing the ongoing sickle cell threat, working together to contain spread of the disease as well as to foster research in the field and exchange expertise. 

The Republic of Congo Brazzaville is at the center of the disease in Africa, that also affects persons in Gabon, Cameroon and the Democratic Republic of Congo (DRC) at about the same rate.  The Director of the Sickle Cell Center of Brazzaville, Alexis Elira. plans for the Center to serve as the central clearinghouse for the Central African Region.

“We plan to institute better screening throughout the region through new equipment and the latest information and training, with the help of our American partners,” says Elira.

The center has also signed an agreement with the Sickle Cell Disease Association of America, headquartered in Maryland.

“Our hope for this trip and in-person meetings is to strengthen the partnership between our Center in Brazzaville with Howard University and the Sickle Cell Association of America,” Elira explains. 

The First Lady of Congo began advocating about sickle cell disease in 2004 because she saw many people in her country affected by the disease, and decided to make it a priority. 

This writer first became aware of the issue when hosting the First Ladies of Africa Health Summit in May 2013 and giving an award to the First Lady of Congo for her work in SCD.  My introduction highlighted her success in advocacy that helped lead to a United Nations General Assembly resolution in 2008 recognizing sickle cell anemia as a public health problem, among the world’s foremost and at times most lethal- genetic diseases, and urging Member States and UN organizations to raise awareness annually on 19 June, World Sickle Cell Day.  

Originally a schoolteacher, the First Lady established the Congo Assistance Foundation in 1984 to promote social action in development, education and vocational training and areas of health including HIV.

Sickle cell disease is a lifelong inherited blood disorder whereby red blood cells stick to the blood vessels, blocking blood flow and needed oxygen to cells throughout the body.

The name comes from the shape of the blood cells into a sickle, meaning crescent or moon, shape. 

The disease can be a death sentence.  Sufferers face severe pain, swelling of the extremities, infections, vision problems, and even stroke and organ damage.

Due to pain caused by SCD, patients have even been linked to opiod addiction.

The condition can be diagnosed in utero, through screening. Fortunately, child deaths have been drastically reduced in the United States, due to statewide routine screening of newborns.

Sickle cell anemia makes life difficult for a child, who must deal with delayed sexual maturity and stunted growth.

The problem extends to couples, becoming a serious society problem, explains Minister Mikolo. “Sickle cell is the reason for a lot of divorce in our country.” 


There is currently no cure, but there are two FDA-approved drug treatments.

“If people knew about what is available for treatment before they marry and have kids, there would be fewer cases in adults,” explains Taylor, a pediatric hematology-oncologist.

Screening is crucial, as blood or DNA tests reveal the trait.  Every Wednesday, a table is set up at Howard University for free screening.

Prevention can beat the odds.  “If those with SCD marry someone also with the SC traits, there is a 1 in 4 chance of having a child with SCD.

Taylor is glad that the health problems of French-speaking Africa are being recognized, compared to the higher profile given to the English- speaking countries on the continent.  He is also pleased to highlight the lesser-known country of Congo Brazzaville, often mistaken for its much larger neighbor, the Democratic Republic of the Congo (DRC). 

“I am confident Congo-Brazzaville can be leader in this field of medicine and be a First in Africa,” says Taylor.   

The coordinator of the American and Congolese partnership, Mr. Chriss Portella, agrees. “I am very excited about the possibilities now to advance awareness about this scourge and possibly eliminate the disease on not only the American and African continents, but around the world,” he says.

What makes this partnership matter?

“It matters that the government is involved,” says Taylor.  “We need doctors, but political will is what will turn the tables on this disease.”

“The First Lady is to be congratulated in her efforts in this capacity,” he adds.

For more information: james.taylor2@howard.edu

BIO: Dr. Judy Kuriansky is a noted international clinical psychologist on the faculty of ColumbiaUniversity Teachers College. At the United Nations, she is a main NGO representative of the International Association of Applied Psychology and the World Council for Psychotherapy, and advisor to the Group of Friends of Mental Health and Well-being of UN Member States, led by Canada, Belgium and Bahrain, who partnered with  the Ambassador of Palau to the UN, Dr. Caleb Otto in the successful intergovernmental campaign to include mental health and well-being in the UN 2030 Agenda for Sustainable Development. She moderates and speaks at many UN events, e.g., for Commissions on the Status of Women and the Commission for Social Development, the World Day of Cultural Diversity for Dialogue and Development, and WHO World Health Day, and is a member of the Committee on Migration and others. A trustee of the United African Congress and board member of Voices of African Mothers, she has hosted a U.S.-Africa Business Expo and the First Ladies of Africa Health Summit;spoken at the Africa Diaspora Investment Forum in September 2018; co-developed a Girls Empowerment Camp in Lesotho; and provided psychosocial support in missions worldwide, including in Sierra Leone during and after Ebola, in China during SARS as well as in China, Japan, Sri Lanka, Haiti, Iran, and Sint Maarten after natural disasters, and for Syrian refugees in Jordan. Her Global Kids Connect Project and Stand Up for Peace Project does trainings, symposia, and concerts worldwide. An award-winning journalist, reporter and producer on TV, radio, print and the internet, she has been a columnist for the Singapore Straits Times, the South China Morning Post and New York Newsday; hosted a top-rated radio advice show; and hosted the "Money and Emotions" television show on CNBC-TV. Her many awards include the Humanitarian Award for Lifetime Achievement in Global Peace and Tolerance. 

 

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