Thalassemia and Sickle Cell Patients in the UK Gain Access to Blood Transfusion Test to Reduce Side Effects

People living with blood disorders like sickle cell disease or thalassemia will now have access to a new blood test that will reduce transfusion side effects.

England’s National Health Service is the first healthcare system to cover the genotyping test. The new test offers a far greater match for future blood transfusions and a reduction in the risk of side effects. Testing will also apply to donor blood. About 20% of transfusion-dependent patients have developed antibodies associated with blood they had received from prior transfusions.

The DNA analysis will provide more accurate matching and assist in identifying blood for patients who have complex requirements. The goal is to avoid delays that occur in an attempt to locate a sufficient amount of matching blood. In an effort to make improvements to blood-matching and to lower the risk of the development of antibodies, NHS England has joined the NSHBT in encouraging patients with thalassemia, sickle cell, and rare inherited anemias that rely on blood transfusions to take this test along with their routine blood tests. Transfusion dependent people with rare anemias, such as diamond blackfan anemia, will benefit from the new procedures.

About Sickle Cell Disease

Approximately 17,000 people in England are now reported as having sickle cell anemia. About 250 new cases are discovered each year. A person with the disorder will experience extreme pain if red blood cells are damaged and block blood vessels which in turn restricts oxygen supply. The disorder is especially common among people of Caribbean and African heritage.

About Thalassemia

Thalassemia is an inherited blood disorder causing the body to have less hemoglobin than normal. Hemoglobin is the protein inside red blood cells that carries oxygen to all parts of the body. The disease can be fatal if it is not treated. The new initiative will provide transfusions that are an improved match and lessen the risk of reactions or other complications.

Thalassemia occurs mostly in people with southern Mediterranean, Middle Eastern, or Asian heritage. An estimated 800 people in England are reported to have the disorder. There have been fewer than 50 new cases reported every year. The test may shed light on many unique blood groups’ genetic makeup and establish improved management of the patient’s condition.

Patients are expected to visit their attending hospital to be tested. Their blood will be sent to NHSBT to for testing. Laboratory and clinical teams are strongly encouraged to assist patients in supporting the program.

A Case in Point

Thirty-four-year-old Ama Aryee a science teacher in Cheshunt, Hertfordshire is a sickle cell patient. Ama developed antibodies from blood transfusions she received during complications from pneumonia.
As a result, it is now difficult to locate matching blood if she should require an emergency transfusion. In all of England there are only about two to four units of blood that would be safe for her to use.
Ama admits that she constantly worries about her situation but tries not to dwell on the fact that there may not be enough of her unique blood type if and when she needs it.

Ama gives her full support to being tested. She notes that if the test had been available to her years ago prior to the emergency transfusion, she may not have had to contend with antibodies now.

Rose Duesterwald

Rose Duesterwald

Rose became acquainted with Patient Worthy after her husband was diagnosed with Acute Myeloid Leukemia (AML) six years ago. During this period of partial remission, Rose researched investigational drugs to be prepared in the event of a relapse. Her husband died February 12, 2021 with a rare and unexplained occurrence of liver cancer possibly unrelated to AML.

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