A tube from the chemotherapy drip curls up Dean Eastmond’s arm, under his T-shirt, and into his chest. He sits in the bright, colourful young person’s cancer unit explaining what his illness means, his chances of surviving, and the choices taken away from him because of who he loves. His voice is soft; he smiles often – small, nervous smiles as if trying to reassure others that everything is going to be OK. Every few seconds the drip makes a clicking sound.
After diagnosing Eastmond with a rare bone cancer – Ewing’s sarcoma – doctors at Birmingham’s Queen Elizabeth Hospital told the 20-year-old student that the treatment is likely to cause infertility, and that therefore it would be wise for him to store a sample of his sperm.
But when Eastmond went to the sperm bank, the staff told him something else: If he died – and there is around a 50% likelihood of that – his partner, Adam Packer, would not be allowed to access the sample, to use with a surrogate mother. They would never be able to have children. However, if Eastmond's partner had been a woman, he explains, she would have been able to use the sample, and give birth to his child.
This legal loophole – the "discrimination" – was like an assault, a “slap in the face” at the worst point of his life, says Eastmond. But it sparked in him a determination to uncover the legal justification for this disparity: How could it be, with a raft of equality laws in place for years, that this area could have been left behind?
In turn, Eastmond's mission set off a chain of events that would expose the confusion surrounding the rules governing fertility treatment after death, and the impact on not only lesbian and gay couples, but also single and married people. And it would, ultimately, force Britain's governing body for fertility treatments to apologise to Eastmond and to issue a clarification on the equal rights of same-sex couples.
Eastmond did all this while undergoing chemotherapy. When BuzzFeed News goes to see him in hospital he is pale and thin – he’s lost 5kg (nearly a stone) in the last two weeks. He sits awkwardly, cross-legged, leaning forward. His hair fell out a few days ago, suddenly, in huge clumps. Packer, his boyfriend, helped shave the rest off – and as the story unfolds it becomes clear that he is entwined in everything. Eastmond says the fellow student, who is 21, already saved him long before the cancer diagnosis.
Something else emerges as the story twists in a series of startling directions: Eastmond did not speak out for himself, but for other LGBT people. He is convinced he will survive.
“Adam was here an hour ago,” says Eastmond, smiling. They met in April 2015. “He slept on the ward last night with me. They put a bed next to my bed.” It was the first day of the second round of chemo. During each round, four lots of drugs are pumped directly into a vein in Eastmond’s chest; it lasts 97 hours. He has a couple of weeks to recover and then he returns. He will have to do this 14 times.
It began with a pain in his ribs.
“In January we had a house party,” says Eastmond, referring to the flat he shares with other students from Birmingham University. “Everyone got really drunk and I woke up the next morning with the most excruciating pain in my side.” He gestures to his ribs on the right. He thought perhaps he had just bashed it while drunk, but he didn’t know and decided not to do anything. “I thought, I won’t make a fuss.” And in a couple of days the pain went.
But it returned the following month, and the month after. “One night I was writhing on the floor in pain. It was absolutely dreadful. But I thought it would pass.” By late May, he could no longer ignore it.
“In the space of two weeks I developed a massive lump,” he says. When he finally walked into the local A&E department, the lump had grown “to the size of a baked bean can”. It was, he says, 8cm by 6cm. “I could cup my hand around it. It felt like a broken rib, like something was pushing against the rib and forcing it to bend.”
But when the doctor in A&E saw the lump, it was clear that it was not a broken rib. Eastmond went for a scan.
“They told me I had a tumour,” he says. “I thought it would be benign, something they could take out.” The hospital took a biopsy and 10 days later Eastmond’s life changed. It was cancer.
Dean Eastmond, before chemotherapy, with his boyfriend, Adam Packer.
“I was numb,” he says. But those in the hospital with him were not. “Seeing Adam’s face and my mum and dad was…” his voice fades to nothing. “Adam had to go to the bathroom because he was feeling so sick.”
Ewing’s Sarcoma normally features malignant tumours in bones, but sometimes in soft tissue. It affects men and boys more than women and girls and is predominantly a cancer found in children and young people – most commonly with a tumour in the pelvis, but rib tumours are not unusual.
Only a couple of dozen cases are diagnosed each year in Britain. In line with current research into patients aged 15-19, Eastmond was told his survival chances are 56%. The causes are unknown.
As soon as the diagnosis was given, says Eastmond, “Life wasn’t the life I had been living in the past couple of years. It was suddenly cancer cancer cancer cancer.”
Before the chemo began, Eastmond went to the sperm bank. He had barely considered having children before, he says, not only because he is still so young but also because he had grown up knowing he was gay and not imagining it was a possibility.
But faced with the prospect of it being an impossibility, Eastmond arrived for the appointment at the sperm bank, where, he says, a member of staff started explaining the consent forms for storing such a sample, either for use later in life or, in the event of death or mental incapacity, for a partner using it. Currently, men and women in Eastmond's situation can bank either sperm or eggs, which could, if desired, later be accessed for surrogacy or re-insemination.
“I brought up in conversation – because I’m not one to shy away from it – the fact that I’m gay, and she lifted an eyebrow and said, ‘Oh, this applies for straight people.'" he says. "Being told that if I died a male partner would not be able to use it [the sperm sample] when a female partner could felt like another slap in the face, another systematic discrimination against you as a gay person. The fact that an LGBT family or family-to-be out there would be in that position and wouldn’t be able to [have children in this way] is absolutely horrendous.”
After the appointment, having stored his sample, Eastmond contacted the Human Fertilisation and Embryology Authority, the NHS body responsible for overseeing this area, and made a Freedom of Information request to access the policies behind this apparent discrepancy.
The HFEA sent Eastmond details of the complex, lengthy rules governing sperm and egg storage (which he forwarded to BuzzFeed News), along with an email confirming that it is “not possible to donate sperm to your male partner to create embryos. This is due to the fact that your partner’s sperm will not be used to create the embryos nor would he be directly undergoing the fertility treatment”. The authority also advised Eastmond to seek legal advice.
“It sounds so hurtful for the partner involved – not being able to have a baby,” says Eastmond. It comes down to a question of choice, he says; a choice, it seems, removed from same-sex couples.
“One day when I’m economically stable enough it’d be amazing to have a child,” he says, aware that now he will have to survive for that to happen. Although he would want his partner to have the option to use his sperm in the future, if he died, for Eastmond, it is the principle, and how that would affect other LGBT couples, that concerns him most.
“I’m hoping this law will never apply to me, but to have that brick wall there, while the highway is open for straight people? The discrimination out there is rooted in everything, and if it’s rooted in healthcare it’s another stop sign that says, ‘You’re different; you’re not part of this system.’ There should be something there for same-sex couples that [enables them to] consent to the partner [using the sample]. LGBT people are just as entitled to a family as anyone else.”
Eastmond is only grateful he realised at this stage; for those who only learn this after their partner dies, it is unthinkable, he says. “To imagine that you’re planning to have a child with this person, losing them must be hard enough, but then to come across the ramifications of these laws must be so distressing.”
The week after the chemo began, as Eastmond began to digest the news about the sperm sample and adjust to a new world of treatment, he went to his parents’ house in Devon to rest. It was the worst period so far, he says, as his body struggled to cope with the toxic effects of the treatment. But then Packer arrived.
“Within three days I went from not doing anything to walking along the cliffs," says Eastmond. "He used the last bit of money in his bank account just to come down and see me."
When Eastmond’s hair fell out, Packer shaved the remaining patches that Eastmond could not reach. What does he see in the mirror now?
“Someone I really wish I wasn’t,” he says. “But someone I’m not going to be forever.”
Several times, as Eastmond speaks of the difficulties facing him, he adds the same phrase at the end of a sentence: “It’s all temporary, isn’t it?”
He says this when talking about the chemo, the grim side effects of it – fatigue, infections, heartburn so bad he has to take liquid morphine, memory loss – and about the surgery planned for later this year, which will likely remove at least one rib and possibly part of a lung.
But so far the chemotherapy has had some visible effect – the tumour that had been protruding through his side has shrunk so that there is at least no external sign of it. But there are other visible signs: the hair loss, the weight loss.
“Walking down the street and getting looks for looking like a cancer patient is…” Rather than finish the sentence, Eastmond adds, “No one knows what to say.”
For people younger than him, CLIC Sargent, the cancer charity, has stepped in to help explain. “They gave my little brother, who’s 9, a book entitled, ‘My brother has a tumour.’”
When Eastmond learned he would not be able to consent to Packer using his sperm if he died, he made a vow. “I thought, I’m going to change this; I’m not going to let this happen.” And so, after writing to the HFEA, he contacted BuzzFeed News.
The day after the interview, BuzzFeed News contacted both the Department of Health – a spokesperson for whom said the HFEA was best placed to respond – and the HFEA itself to ask why same-sex couples were unable to access their partners' samples, and for the authority to provide some legal clarity on this.
When a spokesman for the HFEA responded, he admitted that after investigating further, the authority realised that its advice to Eastmond had not been entirely correct, that Eastmond's case had triggered internal discussions about the rights involved for same-sex couples, in order that the authority was correctly interpreting the law. The same day, the HFEA emailed Eastmond. His case, said the email, "led us to go back and review the response" they originally gave him and "after further discussions" they could provide a "more detailed and accurate response".
The email continued that "contrary to what we said in our original reply, you should be able to donate to your partner so that he can use your sperm".
However, the email sets out the legal hoops through which he and Packer would need to jump to have even a hope of enabling Packer to use the sample in the event of Eastmond’s death.
It advises that Eastmond would need to "seek legal advice" in order to correctly word a statement of consent to accompany his sperm sample, explaining for whom and for what it could be used after his death. Even then, it continued, "Your partner will not become the ‘owner’ of your sperm on your death and he will not be able to say what may or may not happen with your sperm. This is something you must do, it is a legal requirement."
Packer would also need legal advice in order to ensure that he would have parental rights, it explained. But even then, the HFEA explained, if Packer were single this might prove difficult in the event of using a surrogate mother, because if she is married, her rights to the child would trump Packer's, therefore preventing him from becoming the legal father, as surrogacy laws favour couples over single people.
BuzzFeed News asked the HFEA one further question, however: How does this differ – if at all – from what a heterosexual person would have to do? In a telephone call, a spokesman for the HFEA confirmed, finally, the single piece of clarification that Eastmond had sought all along – for him and his partner, but principally for all same-sex couples facing their predicament.
The HFEA, said the spokesman, is clear: A same-sex couple does not have to do anything differently to a heterosexual couple; there is, in the end, no distinction on the grounds of sexual orientation, or indeed gender. A person who might die can stipulate, with legal help, who can use their eggs or sperm. The discrimination exists at the point of surrogacy: A biological mother's rights cannot be extinguished by a single person: male, female, gay or straight.
In the end, although it is technically feasible, practical difficulties remain, as conceded in the HFEA's email to Eastmond: "It may indeed be possible for you to donate your sperm for use in someone else’s treatment with your partner, but, as you see, doing so is not without considerable legal complexity."
But for Eastmond, it is a victory: The principle of equality has been clarified and stated publicly. Still in hospital attached to his chemotherapy drip, he sent BuzzFeed News an email about this development:
“It's encouraging to know that there are legal ways around the system to help LGBT families. It's still upsetting to hear that the laws behind surrogacy and co-parenting are complicated, especially as cases similar to my own are already so stressful and exhausting in the first place. The HFEA's apology for originally providing differing information is no fault of their own and articulates how confusing fertility laws are for gay and bi men and women. Though I'm not planning on having children for quite some while, it's good to hear that there's help in place for people in similar situations.”
The same day, something else happened, and he sent another email explaining that his hospital might be sending him to the USA for proton beam therapy – a different form of radiotherapy – which, according to NHS England, uses "a high energy beam of protons rather than high energy X-rays to deliver a dose of radiotherapy" and "works best on some very rare cancers" and which "can be a more effective form of therapy because it directs the all-important radiation treatment to precisely where it is needed with minimal damage to surrounding tissue."
“It’ll really help me beat this," he wrote. "I’m hopefully one of the lucky ones and find out in two weeks!”
Eastmond has started blogging about his experiences of cancer. It keeps him going, he says, while hopefully helping others feel less alone. Although still facing at least a year more of treatment, after finding success in clarifying the rights of those in his situation, he wants to keep championing the rights of LGBT people's healthcare more generally. Above all, he wants to focus on the future.
“I can’t wait to graduate,” he says. “To continue my freelancing, to move to London – and to be with Adam.”
The NHS trust responsible for the sperm bank did not respond to BuzzFeed News' request for comment prior to publication.