The National Black Church Initiative Launches Sickle Cell News

The National Black Church Initiative (NBCI), a coalition of 150,000 African American and Latino churches that constitute 27.7 million churchgoers, launches the first edition of its Sickle Cell News to ensure that sickle cell warriors get the information, treatment, and
resources they need.

Reverend Anthony Evans, President of the National Black Church Initiative, states “This is a revolutionary step as we chronicle the often untold or silenced experiences of the sickle cell disease and the sickle cell warriors of survivors and supporters. Sickle Cell News will offer a venue to share those experiences as well as those critical resources involving medical, administrative, and related areas necessary toward the livelihood of those impacted by the sickle cell disease.”

The launch of Sickle Cell News whose byline, “Giving Voice to Sickle Cell Survivors and Supporters,” is revolutionary for three reasons. First, Sickle Cell News serves to educate the American public all over the country about the importance of sickle cell disease and its impact on African American and other ethnic groups. Secondly, Sickle Cell News highlights the contributions of our sickle cell community as they fight to be respected and to shake off the stigma that has surrounded sickle cell for years. Thirdly, Sickle Cell News demonstrates how churches have provided and utilized important foundational resources to inform constituencies about the sickle cell disease. Now that the sickle cell community supports along with the Black Church are joining forces, our capacity to address the sickle cell disease is even more expanded.

In addition to our expanded capacity, our collective efforts, too, focus on passing national legislation. To ensure that Centers of Excellence to care for the sickle cell community, the Sickle Cell Act is being considered in Congress in 2023. Thus, our need to both expand and enhance our focus on the sickle cell disease throughout the country is critical.

However, Reverend Evans was joined by other prominent leaders in acknowledging the importance of having a publication such as the Sickle Cell News is available to the public.

Reverend William E. Flippin, Jr., Senior Pastor of Greater Piney Grove Baptist Church in Atlanta, Georgia, states:

“Most African Americans have heard or known some that have suffered from sickle cell anemia. Until it affects us personally, we can just dismiss it as something that is rare. About 100,000 people in the United States are affected. People of African descent make up 90% of the population with sickle cell. We have heard that when a sickle cell crisis occurs, it is extremely painful. Tragically, those with sickle cell disease die about 20 to 30 years earlier than those who do not.

Recently, I attended a seminar and had a wakeup call from this information session sponsored by The National Black Church Initiative in Atlanta. It was so disturbing to hear the stories of people suffering from this inherited condition. It was even more difficult to learn that many are treated rudely during a crisis and seeking emergency medical help. They can be accused of being drug addicts or just pretending that the pain is severe.

After hearing this information, I shared with my church that we must get involved in this fight! I also called and apologized to one of my members that has suffered with sickle cell all his life. Unfortunately, we had always placed him on our sick list and probably half prayed with even fewer visits.

We must do better and speak up for those individuals and families affected. GET IN THE FIGHT!”

Tabatha McGee, Executive Director of the Sickle Cell Foundation of Georgia, agreed.

“This publication is welcome news to the sickle cell community and appreciated tremendously. It will not only educate the public about the disease, but it will also help end the stigma that sickle cell carries to this day, especially when one experiences a crisis. Keep in mind, pain is not something that can be seen.

We have been in the fight for the past 51 years after physicians were discovering an increasing number of babies dying due to a disease that few people knew about nor researched years prior. Our mission, and that of the National Black Church Initiative, is to END THE SICKLE CELL CYCLE through education and information.”

Indeed, Reverend Anthony Evans, along with the support of other advocates, is pleased to announce that NBCI will be one of the first to provide comprehensive and culturally-competent information, resources, and treatment through Sickle Cell News. Sickle Cell News will be
released quarterly as an important venue to document and share the experiences of the sickle cell community across the Atlanta metropolitan area.

Please join with us in this critical effort of Sickle Cell News! More information about sickle cell can be found at https://sicklecellga.org/

Sickle Cell News was made possible with the support of Global Blood Therapeutics (GBT), a subsidiary of Pfizer.

More Black blood donors urgently needed to help sickle cell patients

The American Red Cross is emphasizing the unique role Black blood donors play in the medical treatment of those living with sickle cell disease during Sickle Cell Awareness Month this September. Right now, more Black blood donors are critically needed to help patients battling sickle cell disease as blood drives – especially those at schools, colleges and universities – continue to be canceled at alarming rates.

Last spring, more Black blood donors gave at Red Cross blood drives held at educational institutions than at any other blood drive location type. As drives across the country canceled this spring due to coronavirus concerns, the number of Black blood donors giving at these schools decreased from over 15,000 in 2019 to about 2,700 this year. Drives at educational institutions make up the largest percentage of fall blood drive cancellations, so the need for more Black blood donors for sickle cell patients is expected to remain urgent.

“Sickle cell disease profoundly impacts the quality of life of those living with this inherited blood disorder, and your blood donation could be the donation that helps a patient keep fighting,” said Dr. Yvette Miller, executive medical director, Red Cross Blood Services. “The pandemic hasn’t stopped the need for transfusions for sickle cell patients. The Red Cross encourages eligible donors to roll up a sleeve and share their strength with patients during Sickle Cell Awareness Month.”

More Black blood donors are urged to make a blood donation appointment by downloading the Red Cross Blood Donor App, visiting RedCrossBlood.org, calling 1-800-RED CROSS (1-800-733-2767) or enabling the Blood Donor Skill on any Alexa Echo device.

How donations from Black blood donors help sickle cell patients

About 100,000 people in the U.S., most of whom are of African or Latino descent, are living with sickle cell disease, making it the most common genetic blood disease in the country. Sickle cell disease causes red blood cells to be sticky, hard and crescent-shaped instead of soft and round. This makes it difficult for blood to flow smoothly and carry oxygen to the rest of the body, which may lead to severe pain, tissue and organ damage, acute anemia and even strokes.

Blood transfusion helps sickle cell disease patients by increasing the number of normal red blood cells in the body, helping to deliver oxygen and unblock blood vessels. Patients with sickle cell disease depend on blood that must be matched very closely – beyond the A, B, O and AB blood types – to reduce the risk of complications. Some of these rare blood types are unique to specific racial and ethnic groups, and because of this, sickle cell disease patients are more likely to find a compatible blood match from a blood donor who is Black.

Get more information about blood and diversity.

Important COVID-19 information for donors

The Red Cross is testing blood, platelet and plasma donations for COVID-19 antibodies. The test may indicate if the donor’s immune system has produced antibodies to this coronavirus, regardless of whether they developed symptoms. Red Cross antibody tests will be helpful to identify individuals who have COVID-19 antibodies and may qualify to be convalescent plasma donors. Convalescent plasma is a type of blood donation collected from COVID-19 survivors that have antibodies that may help patients who are actively fighting the virus. Donors can expect to receive the results of their antibody test within 7 to 10 days through the Red Cross Blood Donor App or the donor portal at RedCrossBlood.org.

The Red Cross is not testing donors to diagnose illness, referred to as a diagnostic test. To protect the health and safety of Red Cross staff and donors, it is important that individuals who do not feel well or believe they may be ill with COVID-19 postpone donation.

Each Red Cross blood drive and donation center follows the highest standards of safety and infection control, and additional precautions – including temperature checks, social distancing and face coverings for donors and staff – have been implemented to help protect the health of all those in attendance. Donors are asked to schedule an appointment prior to arriving at the drive and are required to wear a face covering or mask while at the drive, in alignment with Centers for Disease Control and Prevention public guidance.  

How to donate blood

A blood donor card or driver’s license or two other forms of identification are required at check-in. Individuals who are 17 years of age in most states (16 with parental consent where allowed by state law), weigh at least 110 pounds and are in generally good health may be eligible to donate blood. High school students and other donors 18 years of age and younger also have to meet certain height and weight requirements.

Blood and platelet donors can save time at their next donation by using RapidPass® to complete their pre-donation reading and health history questionnaire online, on the day of their donation, before arriving at the blood drive. To get started, follow the instructions at RedCrossBlood.org/RapidPass or use the Blood Donor App.

About the American Red Cross

The American Red Cross shelters, feeds and provides emotional support to victims of disasters; supplies about 40% of the nation’s blood; teaches skills that save lives; provides international humanitarian aid; and supports military members and their families. The Red Cross is a not-for-profit organization that depends on volunteers and the generosity of the American public to perform its mission. For more information, please visit redcross.org or cruzrojaamericana.org, or visit us on Twitter at @RedCross.

Sickle Cell Disease Association celebrates National Sickle Cell Awareness Month

Sickle Cell Disease Association celebrates National Sickle Cell Awareness Month

Conferences, advocacy, blood donations and other events held throughout September

HANOVER, Md.—Sickle Cell Disease Association of America will participate in National Sickle Cell Awareness Month in September by holding a series of events and supporting the events of member organizations. National Sickle Cell Awareness Month was designated by Congress to focus attention on the need for research and treatment of sickle cell disease.

“Individuals and organizations can join our efforts to bring attention to sickle cell disease by engaging elected officials for proclamations, hosting awareness events, distributing educational information to dispel the myths about sickle cell disease and lighting public spaces, buildings and landmarks red,” said Beverley Francis-Gibson, president and CEO of Sickle Cell Disease Association.

• The 2020 Sickle Cell Disease Therapeutics Conference will take place virtually Sept. 15 at 9 a.m. Hosted by Global Blood Therapeutics Inc. in partnership with the Sickle Cell Disease Association, the conference provides a forum to discuss the latest advancements and future trends for treating patients with sickle cell disease. Health care companies, opinion leaders, patients, policymakers and others will present at the conference. Learn more and register online.

• A Sickle Cell Awareness Month Twitter Party, an online Twitter conversation hosted by the Sickle Cell Disease Association where participants interact, share, learn and celebrate by posting tweets using the hashtag #SickleCellMatters, will take place Sept. 21, 23 and 25 from 12:30 to 1:30 p.m. Register online.

• Fight sickle cell disease by donating blood to the American Red Cross. Donors can make an appointment by downloading the American Red Cross Blood Donor app, visiting RedCrossBlood.org or calling 1-800-733-2767.

• Sickle cell groups across the country will hold National Sickle Cell Awareness Month events throughout September, including town halls, webcasts, walks and races, summits and seminars and fundraisers. Learn more online.

Sickle Cell Disease Association invites advocacy organizations, corporate and federal partners and supporters to use the hashtags #SickleCellMatters, #SickleCellAwarenessMonth, #SCDAA2020AwarenessMonth and #SCDSCTMatters in social media posts about sickle cell disease throughout September. More information, including a flyer and fact sheet, is available online. Sickle cell disease is an inherited blood disease causing red blood cells to take a sickle shape, which leads to blockages that prevent blood from reaching parts of the body. As a result, people with sickle cell complications can experience anemia, jaundice, gallstones, stroke, chronic pain, organ damage and premature death. No universal cure exists. (sicklecelldisease.net)

Sickle Cell Disease Association of America advocates for people affected by sickle cell conditions and empowers community-based organizations to maximize quality of life and raise public consciousness while advancing the search for a universal cure. The association and more than 50 member organizations support sickle cell research, public and professional health education and patient and community services. (sicklecelldisease.org)