Through leadership shown by colleagues and supporters, we successfully campaigned for the Government to change the rules that predominately impacted Black people of African heritage from donating blood and plasma.
The safety of the blood donation system has always been of the upmost importance but so too is the ability of people to donate blood without being unfairly discriminated against. For people to have trust in the blood donation system, they need to know that the eligibility criteria is driven and informed by the latest science.
Anything less than this not only perpetuates misinformation about HIV, it also limits the blood supply that can be a lifeline for people in their greatest need, in this case Black people of African heritage.
For the bulk of this year, we have been actively campaigning for the UK Government to scrap rules that disproportionately impacted Black people in England.
In October 2021, the Department for Health and Social Care finally ditched the rules and finally listened to the scientific advice, meaning the three month deferral for anyone who has ‘a partner who has, or you think may have been, sexually active in parts of the world where HIV/AIDS is very common’ such as ‘most countries in Africa’.
Here’s how we overturned this discriminatory rule
Over the past decade, there had been several changes to blood donation rules across the UK that have meant more people have been able to donate blood. However, many groups were still impacted by deferral periods (from when someone has sexual contact) which in effect were still bans on being able to donate.
To address this, the UK Standing Advisory Committee on the Safety of Blood, Tissues and Organs, established a group to review whether the blood donation system could more to a more individualised donor selection system. The FAIR (For the Assessment of Individualised Risk) steering group was set up and Medical Director, Dr Michael Brady, and our friends at National AIDS Trust were invited to be members.
The ‘gay blood ban’ was well known but rules relating to countries where there are higher rates of HIV transmission much less so. Glenda Bonde, Head of NHS Services and Co-Chair of the Racial Diversity Working Group, worked to tirelessly to keep this issue on the agenda, resulting in the charity taking this on as a priority policy campaign.
In June 2021, FAIR published its recommendations. These included removing the three month deferral period for some gay and bisexual men, and the removal of rules relating to countries where there are higher rates of HIV transmission.
The Scottish and Welsh governments fully implemented the recommended changes for both groups, but the UK Government only removed the rules relating to gay and bisexual men.
This inequality immediately became the organisation’s priority
In partnership with the One Voice Network and National AIDS Trust, we wrote to the then Health Secretary, urging him to rethink this rule and provide an equalities impact assessment on why the UK Government had chosen to deviate from the decision made in Scotland and Wales.
NEW. End all discrimination in blood donation.
Today changes to blood donation criteria come into force meaning far more gay & bisexual men can safely donate. But discriminatory restrictions remain which mainly impact Black communities.
This must urgently change @MattHancock👇 pic.twitter.com/T4C5fEGh9V
— Terrence Higgins Trust (@THTorguk) June 14, 2021
To our frustration, we did not receive a reply from this letter and our calls for a rethink went unanswered for months. But that did not stop us from redoubling our efforts to draw attention to this issue.
We worked with the Shadow Women and Equalities Minister, Taiwo Owatemi MP, and her then Health Select Committee colleague, Sarah Owen MP, to write an open letter to the new Health Secretary, urging him to look at this issue. Both MPs highlighted that Black donors are 10 times more likely – than white people – to have the Ro and B positive blood types urgently needed to treat the 15,000 people in the UK suffering from sickle cell disease.
The letter followed an extremely disappointing response from Health Minister, Maria Caulfield MP, to a written question by Florence Eshalomi MP, who said the current rule would be in place in order to ‘ensure the safety of these donating and those receiving blood and blood products...’.
Our Vice Chair @FloEshalomi has now had a response from @Mariacaulfield @DHSCgovuk on what plans they have to update 🩸donation criteria to remove the 3 month restriction on donating 🩸for anyone whose partner has had sex with someone from parts of 🌏 where HIV is very common. pic.twitter.com/x1CNvWhEZN
— APPG on HIV and AIDS (@APPG_HIV_AIDS) September 28, 2021
This again was despite FAIR presenting evidence showing there was no increased risk to the blood donation system by scrapping the three month deferral period in England.
We continued working alongside partners and our Racial Diversity Group, meeting with decision makers and civil servants behind the scenes to make our case.
Securing the campaign win
In mid-October, nearly four months since the FAIR recommendations were published, the Department for Health and Social Care finally announced it would be scrapping the rule relating to blood donors with partners who have had sex in parts of the where there are high rates of HIV. We finally got our campaign win.
We're changing the questions potential blood donors are asked to make it easier to #GiveBlood, particularly for Black African donors.
This will mean more opportunities for people to help save lives by donating rarer blood types 🩸
Find out more 👇@givebloodNHS @NHSBT
— Department of Health and Social Care (@DHSCgovuk) October 11, 2021
The Health Secretary, Sajid Javid MP, accepted the recommendations of FAIR and this means the donor selection question on partners from Sub-Saharan Africa will no longer have to be asked in England.
Today I’m making blood donation more inclusive by removing the question on sexual activity in Sub-Saharan Africa asked in the donor safety check.
This will reduce health disparities & save lives as more people will be able to donate.https://t.co/CD5PnPni9o
— Sajid Javid (@sajidjavid) October 11, 2021
Great news that @sajidjavid has finally agreed to end discriminatory blood donation rules, which for too long have stopped many black Britons from donating blood.
I've been very pleased to campaign for this change alongside @THTorguk & @NAT_AIDS_Trust✊🏿https://t.co/Osau6C5Kye
— Taiwo Owatemi MP (@TaiwoOwatemi) October 11, 2021
This win is a credit to colleagues who helped spearhead this issue, and the strength of working together with our partners, supporters and Parliamentary champions. While there is still lots of work to be done in order to address significant racial inequities in HIV and sexual health, this rule change is a step in the right direction and shows that change can happen.
Glenda Bonde is Head of NHS Services (England) and Liam Beattie is Public Affairs Officer at Terrence Higgins Trust.