‘Blood transfusions saved my life but the lack of Black donors puts me at risk’

Bola Jibodu, 41, has suffered with sickle cell disease since she was 10 months old.

She is one of an estimated 12,000 – 15,000 Brits suffering with SCD in the UK who is reliant on a readily available supply of blood donations to manage her illness.

READ MORE: Living with sickle cell: ‘I don’t think anyone gets even 5% of what it means’

However, Black communities continue to be seriously affected by a shortage of blood donations which is directly impacting those, like Bola, who rely on blood transfusion from ethnically matched donors.

Bola moved to the UK from Nigeria at the age of 18 and had experienced regular sickle cell disease pain crises, which can often lead to hospitalisation, as the number of sickled red blood cells rises to dangerously high levels.

Non-sickle cell sufferer red blood cells regenerate every 120 days naturally whilst a sickle-cell patient could begin to see the degeneration of their blood cells from as early as just seven days.

Bola told MyLondon: “When you are diagnosed with severe sickle cell disease you go through pain most of the time as well as being more susceptible to infections and you constantly feel tired and weak.

“‘It takes its toll on you as an individual.”

She had struggled to manage her SCD with pain killers and ‘top-up’ blood transfusions alone and it had a negative impact on her overall health, wellbeing and lifestyle.

After a near death experience four years ago, as a result of pneumonia, her doctor tried every treatment except the exchange blood transfusions, which have now become vital for Bola’s health.

As a result, every five to six weeks Bola now attends a hospital visit where she receives the vital treatment to maintain healthy levels of non-sickled red blood cells in her body.

Exchange blood transfusions differ from the more common ‘top-up’ transfusions as they directly remove sickled blood cells from the body and then use donated blood as a replacement.

Bola said: “The treatment lasts about four to five hours and the machine helps to separate what parts of the donor’s blood the doctors want to go in and what they don’t.

Whereas ‘top-up’ blood transfusions do not remove blood from the patient in the same targeted approach and so the patient receiving an exchange blood transfusion, also known as an automated transfusion must ensure their blood donor is a close ethnic match.

Bola said: “I started on automated transfusions four years ago after my episode with pneumonia and my doctor insisted I be put through exchange blood transfusion treatment.

“The only people they do this for are those who have a very very severe case.

“The main treatment helping patients is the exchange blood transfusion, but not everyone can receive it due to a short supply of blood.”

Since the new treatment began Bola has not experienced any acute sickle crisis and has not had to be admitted to hospital for over four years.

She says: “For me this was an answered prayer, God gave us a miracle.

“Hospital used to be my second home, without the mortgage, but now I have more energy and I can be there for my husband and my children.”

Those suffering from sickle cell disease (SCD) require blood transfusions from a donor with an ethnic match but barriers that alienate black Brits from the donation process are majorly impacting minority communities.

Campaigners have long lobbied for the criteria preventing those who have had sexual activity with people from parts of the world with high levels of HIV/AIDS to be removed from the blood donation requirements.

The changes to the blood donor eligibility form have now been made but MPs and campaigners have criticised the time taken for the changes to implemented.

Taken directly from the Blood Donor Selection Policy from the NHS, it has been clarified they have “removed a question to ask if you or your partner has had sexual contact in Sub-Saharan Africa” and also that those wishing to donate “will no longer be asked if you or your partner has had sex in a part of the world where HIV is common”.

Back in October the Labour MP for Vauxhall, Florence Eshalomi, along with MP Taiwo Owatemi worked alongside the Terrence Higgins Trust to enact changes to remove the question from the form.

Richard Angell, Campaigns Director at Terrence Higgins Trust, said at the end of December 2021: “Health minister Maria Caulfield said in October this discriminatory restriction would be removed by the end of 2021 at the latest. But the end of the year is here and its removal hasn’t been confirmed.

“The removal of the question is particularly important as it eliminates one of the key barriers which has until now played a role in preventing the recruitment of more donors from Black communities.

“The exclusionary rule affecting those who have had sexual contact with people from parts of Africa has undoubtedly impacted the amount of ethnically matched blood available to treat people with sickle cell, and we call on government to implement this vital change without any further delay.”

The Department for Health and Social Care clarified that the “question asking donors whether they have recently had sex with a partner who may ever have had sex in an area where HIV is endemic (including most of sub-Saharan Africa) was removed from the blood donor safety check on 21 ^st December 2021.”

A spokesperson from the Sickle Cell Society, where Bola works, said they believe “that an individualised, rather than blanket, approach to ensuring blood safety is vital in removing the barriers to blood donation.”

Richard Angell added: “Many people with sickle cell (most of whom are of black-heritage) rely on the availability of ethically matched blood to keep them alive and well and there is not enough people from black backgrounds coming forward to donate.”

Bola has been campaigning to raise awareness of the importance of blood donations from black communities in London and has worked with the Sickle Cell Society to debunk the misunderstandings surrounding giving blood.

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She said: “Another challenge we face is that people that have been raised in a Sahara region, or where there are mosquitos, cannot give blood or if you have been to African the past six months. there are also limitations.

“I’m a beneficiary of these donations, I go through regular treatment, obviously I want the Government to do the right thing with the right screenings to protect me from infections so I appreciate what they are trying to do but these limitations need to be reconsidered”.

Under current UK blood donation rules, those wishing to donate blood are asked whether they have had sex with a new partner or more than one partner in the last three months and also if they have participated in anal sex with a new partner they will not be able to donate blood.

The NHS states: “The latest update will help the UK blood services to recruit more Black donors to meet the needs of patients in the future.”

You can find out more about the Sickle Cell Society here.

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