THIRD SECTOR & COMMUNITY
FreedomToDonate founder Ethan Spibey went against the flow to change the country’s out-dated blood donation policy for gay and bisexual men.
Earlier this month, FreedomToDonate, which has been at the forefront of a campaign to challenge stigma around gay blood donors, celebrated a win when the government announced a policy change. For years since the worst of the Aids crisis, the medical establishment upheld the prejudiced view that gay men’s blood is toxic, an outdated fact given the incredible advancements in HIV treatment and sexual health testing.
Ethan Spibey, a director at Purpose Union, a social purpose strategy firm that works with clients to develop campaigns around social impact, founded FreedomToDonate to drive policy change in gay blood donation. Five years since the group was founded, he is ecstatic about the government’s decision to revise its blood donation guidelines. “It’s huge. For the first time ever, gay and bi men are not singled out, or treated as an entirely risky group,” Ethan told Attitude. “Instead, everyone and anyone, regardless of sex or sexuality, is assessed on their individual risk.”
The new policy is for potential donors to be asked a series of questions about the number and nature of sexual partners they have had, and their risk and eligibility to donate will be based solely on that. “It’s a huge success for the campaign and the many LGBTQ+ charities that have worked so hard on this policy for years,” he adds. “There’s absolutely further to go, but for once, this is a monumental shift to a fairer, more equal policy and that’s a great thing.”
You were once turned away when you tried to give blood. How did that make you feel?
It was soon after my grandad had a major operation. At the time, I remember feeling guilt and shame. We were trying to donate as a family as a way to pay back that donor
Five years ago, Ethan Spibey founded FreedomToDonate, to fight the stigma around gay and bisexual men donating blood. With the government now reworking its policy on a more equal footing, we are saluting Spibey’s work by making him the leading light in our Third Sector & Community category
for the blood they donated, which saved his life. To think that I couldn’t make that simple yet powerful gesture, and do the same for someone else, made me feel pretty worthless. It harks back to a time when gay and bisexual men were seen as outsiders, and to be turning away willing donors seemed to be completely senseless.
How did you set up FreedomToDonate after that experience?
A few years after my grandad had the operation, I had finally figured out how to make something like a pressure group work. I had been volunteering before around the equal marriage debate and learning a lot about what was needed to make something like FreedomToDonate work. I set about getting people involved from the variety of backgrounds that were needed, from media to political lobbying, and at the outset there were four of us. Up to around 15 people, though, have been involved in various ways working behind the scenes with the campaign over the years — our success is testament to the passion and determination they all showed.
Are there any other changes you would like to see in government policy?
Absolutely. Now we have changed the course to move from a blanket approach to an individual risk-based policy, there’s an exciting possibility of improving and tailoring the policy even further. I’d like
to see more for those with PrEP, more innovation when you test clear at a sexual health clinic, and further tailoring of the risk profile so even more gay and bisexual men can safely donate. Things like this, unfortunately, take years and a huge amount of energy, effort and focus from the groups involved, but I’m convinced that, with the significant advancements we’ve made to date, we can go even further and continue to lead the world in a pioneering area of policy for gay and bisexual men.
More broadly, the LGBTQ+ [community] continues to suffer from a plethora of inequalities due to policy issues, from parenting to access to health and mental health services. It feels like it’s been a particularly difficult time for trans people, hounded in the media and excluded from key policy decisions. That has to change.
Did you ever feel you had to hide your identity at work?
Absolutely. Especially when I started my career in Westminster, there’s a lot of expectations of how you should be, or look, or act. So I hid it for a while, but thankfully found other companies to be extremely supportive and have been lucky enough to say, in my past few roles, I’ve felt entirely comfortable being open about my sexuality. I also know I’ve been very lucky. I’m male, white and gay — friends and colleagues, especially outside London, have had much more negative experiences, so I really do count my blessings.
Has your sexuality helped make you better in your career?
That’s interesting. For me, I think in the past few years, it’s definitely been an advantage in many ways. Diversity is an incredible asset for organisations, different views and life experiences bring a benefit to seeing things from different perspectives, so I hope I’ve helped bring some of that from my own experiences.
Has your sexuality ever been an obstacle ?
I struggled with it when I was a teenager, but I know I’ve also been extremely lucky, too, in many ways, such as the family around me and the opportunities I’ve had. For far too many people, being who they are leads to bullying, exclusion, isolation and loneliness and a whole range of inequalities, particularly when thinking about our trans siblings. I’ve had my own personal battles, but it’s nothing compared to so many in our community — it’s one of the things that drives me to want to make a change and try and campaign for things to be better for our community.
What would you say to young LGBTQ+ people seeking to help change legislation or push for greater equality?
Never give up. Change isn’t easy and it takes time and focus. It’s far too easy to get distracted by people attacking you for doing what you’re doing or even trying to bring you down when it’s you who has actually put your passion into practice and done something positive about the things you believe in. It’s easy to lose that, especially with how social media can be, so my advice would be to have the courage of your convictions, ask for help and stay positive. I passionately believe in what an individual can do, we’ve seen many examples of this in the last year with the power of personal stories, and the ability to build support from the public on deeply held beliefs. There is still a long, long way to go, so the more campaigners and activists who step up, the better. We need more people to get engaged, get involved and fight for change, now more than ever.
“The LGBTQ+ community continues to suffer from a plethora of inequalities”