Blood of the Paladin

by Richard Gorman

Jonathan Hill’s graphic novel, Blood of the Paladin, begins with the moment he nearly died. A young man vomits blood, loses consciousness, and hits the floor. A twenty-sided die shows a 1: a critical failure in gaming parlance. Blood of the Paladin is a memoir, based on Hill’s life with haemophilia and his experiences of contracting HIV/AIDs and hepatitis C through contaminated blood products – medicines which were supposed to help him manage his haemophilia.

Haemophilia is a rare genetic condition which affects the blood’s ability to clot. People with haemophilia are susceptible to spontaneous bleeding, as well as prolonged bleeding following injuries or surgery. Treating and preventing bleeding (both internal and external) is key to the management of the condition, primarily through the replacement of the missing blood clotting factors. Throughout the middle of the 20^th century, this was done through plasma transfusions, however, by the 1970s freeze-dried powdered concentrates also became available, revolutionising haemophilia care in allowing people with the condition to self-infuse their medication at home. However, these concentrates were produced through pooling the blood of up to 40,000 paid donors – many in high-risk groups – prior to routine HIV testing. Just one contaminated sample could infect an entire batch of medication. Ultimately, approximately half the people with haemophilia in the US were infected with HIV through contaminated blood products. Thousands died, decimating the bleeding disorders community, and leaving a legacy of hurt, injustice, and mistrust which continues to this day.

Hill dedicates Blood of the Paladin to the many members of his community lost in the wake of ‘the contamination crisis, the HIV/AIDS outbreak, liver disease, hepatitis, the opioid crisis and other challenges’ with the hope that the book might ‘preserve their memories and sacrifices so that we may never allow a tragedy like the contamination crisis and the decades of resulting crises to happen again’.

In his youth Hill found refuge in the popular roleplaying game Dungeons & Dragons (D&D) and these escapes into fantasy serve as a central theme narrating Blood of the Paladin, juxtaposing Hill’s lived experiences with haemophilia. Early on in the graphic novel Hill recalls a friend introducing him to D&D, noting: ‘You can be anything you want and do whatever you can imagine. In this world, there are no limits’. Hill makes his roleplaying character a paladin as ‘he looks invincible’. This is a stark contrast to the opening pages where we’re introduced to a young Hill struggling with joint pain, mobility, and self-infusion. He tells his friends, “I don’t want you guys to think I’m different, or weird, or weak…”. As someone with the condition myself, it’s an eminently relatable feeling. The psychosocial impacts of bleeding disorders remain under researched and under supported, particularly for young people. Blood of the Paladin traces Hill’s childhood with haemophilia, with birthdays and Christmases spent hospitalised and on bedrest, yet Hill shows how these periods of isolation allowed him to cultivate a love of reading and storytelling, demonstrating that resilience that can come through chronic illness.

Midway through the graphic novel, in 1984, a young Hill is told that he has tested positive for HIV having received contaminated haemophilia medication. The fear and outrage that the community faced is expressed by Hill’s father: ‘The factor concentrate was the cure. It allows Jon to live a normal life’. It’s a heart wrenching paradox: that a long-promised treatment revolution allowing people with haemophilia to lead more bleed-free and hospital-free lives became the source of new lethal disease. Hill’s fear that ‘everyone is going to hate me’ speaks to the stigma and rampant discrimination associated with HIV and AIDS.

Hill’s fears were likely well founded. 1984 was also the year that another young boy with haemophilia was also diagnosed with HIV, Ryan White. White was prevented from attending his school after parents and teachers campaigned to ban him as part of the widespread fear, panic, and ignorance surrounding AIDS. White became something of a national symbol for AIDS-related discrimination and public education about the disease, and US Congress’ Comprehensive AIDS Resources Emergency (CARE) Act is named after him.

Jon’s father’s assertation that ‘someone needs to answer for this’ is also poignant. Many people in the haemophilia community, both those infected and those affected, are still searching for justice. In the UK, 50 years later, the Infected Blood Inquiry is still ongoing at the time of this writing.

Despite these challenges and through his adventures roleplaying, Hill gains a mastery of public speaking. In the fantasy world, his D&D character comes to recognise that ‘By-Tor is a paladin and people are in danger. The order of the light requires him to act to protect the innocent’, a realisation that serves as a motivating resource for Hill to engage in outreach and educational efforts around HIV and safe sex, becoming a community advocate. Hill goes to the U.S. Congress to support the Ricky Ray Hemophilia Relief Fund Act, intended to support those affected by contaminated blood. Yet as the graphic novel reveals, it is the mantle and armour of Hill’s alter-ego that gives him the confidence to walk up the steps and speak his truth.

A particularly emotive moment in Blood of the Paladin comes as Hill opens up about his HIV status to his partner. He finds understanding and compassion, rather than the fear, anxiety, and rejection which media misunderstanding of HIV and AIDs have led him to expect. Unfortunately, a devastating part of the contaminated blood scandal was that many people with haemophilia – particularly those in the UK –  who had been infected with HIV and hepatitis viruses were not notified – despite in certain cases their medical teams being aware – leading many to unintentionally pass on viruses to partners. Similarly, medical historian Stephen Pemberton, in his book ‘The Bleeding Disease’, showcases how in the U.S. some physicians chose to ‘keep their patients in the dark about the realities of hepatitis, AIDs, and other transfusion-related infections’ where ‘the consensus among haemophilia specialists was to treat AIDS among patients as they had treated hepatitis B infections – on a need-to-know basis’. Pemberton quotes a healthcare professional who questioned ‘did we really have to inform the patients to the same degree and worry about them?’. Likewise, William Hubbert’s historical scholarship has traced how many US-based haematologists were ‘reluctant to admit to themselves just how many of their patients had already contracted the virus’ with such reticence leading many community members to not even realize that they were infected. Such led to what Pemberton describes as a ‘secondary epidemic of AIDS among the wives and girlfriends of HIV-infected hemophilic males’.

Hill’s attempts to seek a life where ‘hemophilia is nowhere to be seen’ initially appear to be proving successful, however, a rise in bleeding episodes leads to a change in his care regime and Hill is faced with a growing treatment burden. More infusions, referrals to a hepatologist to deal with the consequences of hepatitis C infection, demands that he carry documentation and wear a medic-alert bracelet. The graphic novel captures the tension that exists as people with chronic conditions attempt to minimise the intrusions of illness into their lives – much to the confusion of healthcare professionals who seem unable to grasp why their patients aren’t living every moment with risk minimisation and condition seriousness in mind. As Hill reflects, ‘I don’t need some bracelet broadcasting to the world that I’m different…’.

However, the graphic novel finally returns to its opening scene: Hill, hospitalised, severely ill after his bleeding and haemophilia status had gone unnoticed in an ICU with no haematology expertise. It’s a terrifying reminder of the vulnerability of a rare disease – the reliance on being able to voice your expertise in your own condition to acquire the relevant medical support. Hill’s resistance to wearing a medic alert bracelet is positioned as a factor that had led to his near demise. It is also revealed Hill’s hepatitis infection has led to him requiring a liver transplant, however, his insurance insists on this being done at a hospital with no haemophilia expertise. In the face of serious surgery, this is incredibly risky. Hill’s doctor shakes him out his passivity, and into advocacy. Self-advocacy is an important theme throughout the graphic novel, from Hill learning to self-infuse as a child, to campaigning for better sexual-health education and public understanding of HIV and AIDs, to challenging insurers unwilling to fund the specialised care that rare diseases require.

Hill’s quest for a new liver involves many further trials, interposed and narrated through his adventures in the worlds of Dungeons and Dragons. The fantastical provides Hill with a language and metaphor for resilience and finding approaches to manage his conditions, including tackling his (prescribed, but high) opioid use – required to manage the pain of chronic joint damage caused by haemophilia, but a barrier to a transplant. Research suggests that 32–50% of people with haemophilia report living with chronic pain (Khair, et al. 2021). There are few analgesic options for haemophilic arthropathy, and many in the haemophilia community report concern with the seemingly free manner in which healthcare professionals prescribe opioids (Khair, et al. 2021). At the same time, it is not a topic discussed openly – either by the patient community or health care professionals. Hill’s graphic novel is powerful here in beginning to normalise conversations about both pain, and addiction, amongst people living with haemophilia.

Personally, I was particularly touched by Hill’s recollections of the companionship that he received from his dog during moments of illness, and how this encouraged him to get up and move more. People with haemophilia have previously been discouraged from leading physically active lifestyles due to the risk of bleeding, and finding – particularly, non-medicalised – ways to encourage and promote physical activity is a key priority for researchers and healthcare professionals. Many could learn a lot from engaging with Hill’s graphic memoirs here. Too often, the idealised ‘life beyond haemophilia’ pictured in glossy pharmaceutical brochures features stock photos of people rock-climbing and engaging in competitive sport that appear well beyond reach for many with legacies of joint damage. Instead, Blood of the Paladin showcases more mundane moments of activity that spark joy: being in nature, walking a dog, socialising with friends.

The graphic novel closes with Hill speaking at the U.S. National Hemophilia Foundation’s Bleeding Disorder Conference in 2018. Hill’s close friend and fellow haemophilia advocate, Val Bias asks ‘have you ever considered writing about your journey, to share your experiences with others?’. Hill replies, ‘You really think my story can help people?’. Such is the promise of graphic medicine. The ability to inspire, encourage, and explore the shared histories and cultures of a condition.

Much about haemophilia has changed since Hill’s youth and many younger people with the condition might not recognise some of the challenges he has faced. Recombinant products were introduced in the 90s, reducing the risk of blood-borne infections; physical activity is now encouraged, rather than prohibited; treatment is now used prophylactically, rather than retrospectively in the face of bleeding, reducing the risk of extensive joint damage. These achievements are in part due to the work of people with haemophilia, like Hill, willing to advocate for the condition and speak out to healthcare professionals and policymakers alike. As Hill himself describes on Blood of the Paladin’s webpage, “I want young community members to see where we came from…”.

On this point, it’s also interesting to reflect on how the graphic novel itself was produced through a partnership with Believe Limited, a rare disease community-focused digital content agency founded by haemophilia community member Patrick James Lynch and filmmaker Ryan Gielen. Lynch and Gielen thought that Hill’s story would be an engaging way to teach critical rare disease history to young bleeding disorder community members and provide them with an accessible means of relating to the shared heritage and inheritance of advocacy that exists within haemophilia activism.

I think Hill, together with Lynch and Gielen, and artists Allison Conway and Shel Kahn, have created in Blood of the Paladin a powerful resource that captures the experiences of people affected by bleeding disorders at a time of great upheaval. Such narratives continue to have great resonance in the bleeding disorders community and in the wider public sphere, particularly, as in the UK, where issues of infected blood are once again major headlines. Blood of the Paladin is thus a fantastic read for anyone interested in empathetically relating to a horrendous chapter in healthcare history, and – as the infected blood inquiry has begun to do – unpacking the ethical lessons for future healthcare. At the same time, the graphic novel proves accessible to anyone interested in insight and understanding of the lived experience of haemophilia, a condition many have heard of, with it being the classic example often used in teaching the science of genetics and inheritance, though few understand.

Richard Gorman lives with severe haemophilia A. He works as a researcher at Brighton and Sussex Medical School.

^{Khair K, Kriukow J, Holland M. “It’s a way of life”: Results from the Perceptions of Pain in Haemophilia study. J Haem Pract 2021; 8(1): 145-153. doi: 10.2478/jhp-2021-0020}