Sickle Cell Anemia; Your Help is Needed

Worcester residents from various African countries like Kenya, Ghana, Uganda and Senegal wait in line to be tested for sickle cell disease at the The UMass Memorial Blood Donor Center in Worcester MA. The event, the first ever of it's kind, took place recently and is aimed at managing the devastating disease that affects many African Countries .

AjabuAfrica.com
By Peter Gaitho
Pictures by Robert Weinstein


WORCESTER, Mass, November 3-The UMass Memorial Blood Donor Center is sending a desperate appeal to all Sub-Saharan African Diaspora Community to volunteer as blood donors due to the high need for a reliably compatible blood for the ongoing transfusion treatment of children with sickle cell anemia.

Spearheading this noble appeal is Dr. Robert Weinstein of University of Massachusetts, Worcester.
"The story began in November 2006, when the Transfusion Medicine Service performed its first automated red blood cell exchange on a 10-year-old girl with sickle cell anemia. This treatment is commonly performed on high-risk children in order to prevent stroke," says Dr. Weinstein.

 Citing medical statistics, Dr. Weinstein says that approximately 10% of children with sickle cell anemia are at risk of debilitating stroke sometime before their 19th birthday. The only proven way to prevent stroke (or to diminish their risk by ~90%) is with chronic transfusion therapy to maintain their level of sickle hemoglobin below 30%.  This can be accomplished with frequent simple blood transfusion, but the danger is that the child will, over time, become overloaded with iron (250 mg per unit of blood transfused) and may develop severe liver or heart disease down the road. 

"When we re-established the Transfusion Medicine Service at UMass, we were committed to providing state-of-the-art support for these kids," says Dr. Weinstein in his letter to AjabuMedia.com.  "The most efficient way to manage their sickle hemoglobin level is by automated red cell exchange, a procedure whereby we use a blood processing machine to literally exchange their (abnormal) red blood cells for the normal red blood cells of volunteer blood donors.  With this form of treatment, usually once every 4-5 weeks, we can control the level of sickle hemoglobin without imposing an iron load on the child." Explains the UMass medic.

This leads us to the question, why look for blood donors among Sub-Saharan Africans?
To this Dr. Weinstein has this to say; "In the United States and Canada, the volunteer blood donor population is overwhelmingly of European heritage.  Needless to say, our young patients with sickle cell disease are of African heritage. In our region, most of them are actually African. 

And just as there are superficial characteristics of appearance that may distinguish a person of African versus European versus Asian origin, there are superficial characteristics of red blood cells that distinguish people from different parts of the world.  For the most part, these differences among red blood cells are more interesting than they are important. But with repeated exposure to donor blood, the children begin to become sensitized to the donor red blood cells (sort of like a severe form of allergy). 

Dr.Robert Weinstein who is spearheading the effort due to the high need for a reliably compatible blood for the ongoing transfusion treatment of children with sickle cell anemia.

Up to 35% of children under treatment for sickle cell anemia may develop sensitivity to donor red blood cells, and that makes it increasingly difficult, sometimes impossible, to find compatible blood for their red cell exchange treatments.  If we can no longer find compatible donor blood for a given child, the treatment must stop, and the child is once again at the mercy of the disease.  For us, the answer to this conundrum was to recruit healthy donors from the African community."

As a background to the matter at hand, Dr. Weinstein says that as far back in November 2006, sub-Saharan Africans were not permitted to donate blood in the United States. This was due to the absence of a screening test for HIV Group O, a strain of HIV that is endemic to central and West Africa. 

"When I met, one evening, with the UMass Sickle Cell Disease Support Group in early 2007, I learned that many of the family and friends of patients with sickle cell disease had sought to be blood donors but had been turned away by the American Red Cross," says Dr. Weinstein. 

He went on to say that "Some were suspicious that they were being discriminated against, but I explained that, for example, people who lived in Britain between 1980 and 1996 were forbidden to donate because of fear of exposure to mad cow disease.  The US Food and Drug Administration is very conservative regarding blood safety, but had no agenda to discriminate, and they make the rules.  I promised that when a test for HIV Group O became available, we would adopt it as part of our donor screening procedure at UMass."

 But this unfortunate scenario changed in May 2007 when the FDA approved a screening test for HIV Group O and UMass incorporated it into their donor screening procedure. 
Shortly afterward, with the help of John and Juliet Idagbonya, the parents of one child living with sickle cell anemia Dr. Weinstein obtained permission from Pastor Brian Minnich, of First Assembly of God,  to stage an event at his church and to address the congregation from his pulpit.

First Blood Donors
On Sunday, July 13, 2008, Dr. Weinstein explained to the congregation our need for good, healthy, African blood for the ongoing treatment of children with sickle cell anemia. Juliet also addressed the congregation, with Pastor Brian's blessing, and she was very convincing. 

A man gets ready to donate blood for the on going transfusion treatment of children with sickle cell anemia

A lady gets ready to donate blood for the on going transfusion treatment of children with sickle cell anemia

Dr. Weinstein says that the response was amazing, to say the least. "After the church service, over 100 people patiently waited on line under a hot sun to register with us and then to have a blood sample drawn for the purpose of screening them for sickle trait."  Only sickle negative volunteers can be taken as donors. 

The UMass Ronald McDonald Caremobile, a mobile clinic, was parked out in the church parking lot and provided the site where the blood samples were drawn.

Of the 109 good people who underwent sickle screening that Sunday afternoon, 103 were sickle negative!  "I sent a letter to everyone who underwent screening that day to thank them and to explain the results of their test." Says the grateful Dr. Weinstein.

On Sunday, September 21, 2008, the UMass Memorial Blood Donor Center held an actual blood donor drive for the African community of First Assembly of God. 

Lizzie Maina, a Kenyan lady and one of the principal organizers of the drive joined hands with Juliet Idagbonya,Victoria Birago, and others and helped organize, within the congregation, a committee to organize the event. 

They called people from the list of prospective donors who had undergone sickle screening and made sure they would be in church that Sunday.  They also helped to organize a family pot-luck picnic, on church grounds, after services.
"At our request, they designed the logo of the special T-shirt that we had produced for the event," says Dr. Weinstein.
 While families enjoyed the picnic, a shuttle bus was sent to ferry small groups of donors from the church to the blood donor center.

 In all, 30 people came to donate that day.  Some were deferred from donation as a result of the donor screening process. It is ironic that the first person to be deferred was deferred because he had lived in London for at least 3 months between 1980 and 1996!

A lady gets ready to donate blood for the on going transfusion treatment of children with sickle cell anemia

People of African descent in Worcester wait in line to get tested for sickle cell disease and subsequent donation of blood for on going transfusion treatment of children with sickle cell anemia

On behalf of the UMass Memorial Blood Donor Center, Dr Weinstein says that they are encouraged and, "in truth, a bit overwhelmed by the commitment and response of the African donors from First Assembly of God.  They are truly wonderful people who fully understand the importance of what they, as volunteer blood donors, contribute to the care of children with sickle cell disease."

In his closing remarks, Dr. Weinstein says that UMass want very much to forge connections with additional African churches, mosques and community groups so that they can expand the pool of African blood donors and assure a steady supply of compatible blood for our young patients. 

Dr. Weinstein sends this appeal; "I would welcome any opportunity to address African immigrants at such gatherings where we could discuss the problem of sickle cell disease, the need for African blood donors, and how we can work together to provide care for the community."

 The story has been told. As Winston Churchill once said, "There is no finer investment for any community than putting milk into babies." The onus is now on all of us to rise up and heed this clarion call to volunteer and donate blood that will go a long way to give hope and life to those children in our midst who are in need of this life giving blood.

Those willing to help in this noble cause are requested to contact : Harrison Maina info@ajabumedia.com 781-953-2490, Peter Gaitho babaashley2@gmail.com 781-308-6088, Lizzie Maina   email :mmainahp@yahoo.com,  phone 508-756-7992, Dr. Robert Weinstein email:Robert.Weinstein@umassmemorial.org, phone +1-508-334-3725 .

Story contributions by Dr. Robert Weinstein and Lizzie Maina and Peter Gaitho

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