Written by Gavin Johnston
Illustrated by Tony Rodriguez

Beyond the Disease

Three days a week, David wakes up, showers, dresses, and plunges a needle into a vein. He’s been doing this since he was a child. He does this three days a week, for fifteen minutes, because if he doesn’t, a fall or scrape can land him in the hospital. This needle is a reality he’s lived with all 22 years of his life and one he will carry with him until his final days. This ritual of the needle is a constant. It is, and always has been, a symbol of who he is. It has defined his life. He has hemophilia.

Practical anthropologist Gavin Johnston shares the story of a research project he conducted for a U.S. pharmaceutical company. The research and conclusions he and his team arrived at challenged their pre-conceptions about the lives and experiences of young men living with hemophilia, and led to an entirely new communication strategy that was more in tune with the needs of the individuals they were serving. This is how it happened.

Digital illustrator Tony Rodriguez infuses flat color with bold line to convey a sense of spontaneity and simplicity. Although the art is created digitally, it has the look of traditional pen and ink gestural and expressionistic drawings.

2,566 words

With only about 20,000 men in the United States who have hemophilia, a disease that is diagnosed early in life and has to be monitored and treated until someone’s lasts days on earth, it would seem on the surface that medication compliance would be a non-issue. But for our clients, the makers of blood clotting drugs used to treat the disease, it turns out that this very necessary element to living with hemophilia is not as simple as it seems. Quite simply, young men (women rarely suffer from hemophilia) are not as good about taking medication, even when that medication is essential to living a healthy life. Drop-off rates are high between the age of 18 and 22 and the results can be dangerous, even deadly. The resulting slowed sales and inconsistent use by patients is what prompted our client to ask our multidisciplinary team of anthropologists, designers, and digital strategists to explore what it means to live with this chronic, deadly condition and to develop tools and strategies to help increase compliance. By going beyond traditional means of data collection, to explore and engage with the lives of individuals with hemophilia, the hope was to find new paths of communication.

The royal disease

Hemophilia is not a common disease, nor is it one to be taken lightly. “The Royal Disease,” so called because of its prevalence among the royal houses of Europe in the 18th and 19th centuries due to their limited gene pool, is a bleeding disorder that slows the blood clotting process. People with this condition experience prolonged bleeding or oozing following an injury, surgery, or simply having a tooth pulled. This means that for someone with hemophilia, the simplest tasks can cause them to bleed to death or suffer a hemorrhage by, for example, cutting themselves while shaving, or bumping their knee, or, if the condition is severe enough, simply sitting down.

From the time they are children, these individuals have limitations imposed upon them. Playing with others is often curtailed, parents have a tendency to hover, and they grow up constantly under a watchful eye. As one of our participants, John, explained to us as we sat in the Seattle apartment he shared with a couple of fellow college students: “As a kid my mom and dad were everywhere, all the time. I get it, but it fucked with me a little, too. I couldn’t play sports until I was in high school. My mom controlled my infusion schedule and always checked to make sure I’d done it. So when I went to college, yeah, I kind of slacked off. I don’t think it was some sort of rebellion; I mean I wasn’t angry. But there’s a kind of freedom I’d never had before and you take advantage of that, I guess. People can’t imagine what it’s like to shove a needle into their body twice a week, every week, and spend fifteen minutes slowly pumping yourself full of your medicine. You’re used to it, but it still sucks.”

Initially, our client assumed the drop-off rates and issues with compliance were tied to education and so launched a campaign meant to inform these young men of the importance of continued, consistent disease maintenance. It had little impact. These young men have lived with hemophilia their whole lives. They have been using infusion treatments to manage their condition since they were children. And for the most part, they generally had fairly deep, long-lasting relationships with company reps and medical staff. They were, simply put, extremely well educated about hemophilia, treatment options, and disease management.

We hypothesized that rather than being an issue with disease management, the problem was rooted in behavioral and cultural patterns that come with growing up, and a person’s first taste of independence from home. The goal, then, was to understand what was preventing compliance and develop solutions to help by taking a deep look into the cultural and conceptual shifts that happen as people transition from childhood into adulthood.

“My mom controlled my infusion schedule and always checked to make sure I’d done it. So when I went to college, yeah, I kind of slacked off. I don’t think it was some sort of rebellion; I mean I wasn’t angry. But there’s a kind of freedom I’d never had before and you take advantage of that, I guess. People can’t imagine what it’s like to shove a needle into their body twice a week, every week, and spend fifteen minutes slowly pumping yourself full of your medicine. You’re used to it, but it still sucks.”—John

Into the field

The transition from adolescence into adulthood can be difficult, but when chronic illness is a central marker of identity, that transition becomes even harder. For individuals with hemophilia, taking care to infuse means being able to engage in any activity they choose to be involved in—but there are a host of reasons to let treatment slide: some functional, such as time management, and some symbolic, such as telling the disease to piss off.

Moving away from home and being part of a completely non-familial social network is both jarring and liberating. For the first time, a young man with hemophilia is utterly independent. He has control over his life in a way that he never had before, including how he chooses the world to see him. For the first time, we suspected, his identity and his projection of self can be free of his disease—he is simply “Steve,” not “Steve the hemophiliac.”

Based on these initial investigations, we chose to focus our fieldwork on the lives of our participants, not on hemophilia. We also decided to focus on young men in their first couple of years of college, as they tended to have the highest compliance drop-off rates. Our environmental research led to unexpected insights. First, the fieldwork noted that the role of shared space vs. private living space—which was often very limited—had an enormous impact on compliance. The first point of note was the role of the refrigerator. Because the medication needs to be kept cold until use, it has to be stored in the refrigerator. Having the medication on public display was embarrassing and inevitably led to questions from both roommates and visitors. That meant that the young man and his medical condition were suddenly thrust into the spotlight, focusing attention not on the total person, but the person as his illness. The second problem was that finding a place to infuse could be difficult. The process takes about 15 minutes and while it wasn’t hard to find time to do it, the patient needed to avoid interruptions and ensure some degree of privacy. Because this could be difficult, he might simply forego treatment.

As one participant put it, “Everyone’s in your shit. Fifteen minutes of infusing means an hour of jack-off jokes. No one is meaning to be a dick, it’s just how we act at this age, but it can make infusing a pain in the ass.”

House hygiene was another issue. When we entered one apartment, as might be expected, I had to search to find a space that was free of pizza boxes, clothes, or textbooks. Keeping infusion equipment clean, keeping the bathroom clean, keeping the refrigerator clean, etc. was often a point of contention. Because the young man with hemophilia is dependent on others to help keep a clean environment, and thus a clean place to keep equipment—something he had never had to cope with before—it was often simply easier to skip infusion than to confront or manage the living situation.

The environment was only one of the issues impacting these young men; social and psychological changes were also concerns. One of the first things that young men with hemophilia encounter is a degree of personal freedom that they have never experienced before. Whereas there are typically wide ranges of limitations placed on these young men growing up, they suddenly find themselves living a much less structured lifestyle. But the problem isn’t as simple as gaining freedom; it’s also a matter of learning how to handle it. As one participant, Brent, told us, “Hell yes I did stupid things. I had someone watching everything I’ve done for my whole life. So you can go a little bat-shit when you’re on your own.”

Going “bat-shit” might mean drunken wrestling, midnight rugby, or skateboarding without a helmet. In one instance, I had the dubious honor of “officiating” an arm wrestling contest that was fueled by shots of Fireball—needless to say, the drink is not known as something you drink when planning an evening of rich conversation. It, like other novelty drinks, is meant to drive rowdiness. And I watched as our participant had his hand driven into the table by a friend who was considerably larger. Under normal circumstances, this would have hurt. In this instance, had the participant not been infusing, it could have turned out very badly. Social and cultural bonding become more important than managing the disease, sometimes leading to a more exaggerated expression than you see with the typical 18-year-old man. And it often leads to less compliance as the young man finds himself expressing his identity in opposition to his illness.

Not taking the medication is dangerous, but it’s also empowering. One participant, Jason, lived with two other young men in a small apartment, strewn with the standard debris of college life. For him, this wasn’t just a matter of letting the housekeeping slide a bit, it was a way of demonstrating his sense of independence. And while his infusion tools were kept clean and away from the chaos of the apartment, there was the haphazard element to their storage that fit the overarching theme of making a break with the past. “I know it’s stupid, but at least I’m in control. Not my mom. Not the disease.”

Beyond the disease

Coming out of the field, we had amassed a tremendous amount of information. Now we needed to do something with it. Two themes had emerged again and again from our research: the idea of a positive rite of passage and the importance of control.

Rites of passage into adulthood are limited but necessary for everyone. They serve as a symbolic transition into a new state of being, with certain responsibilities, actions, benefits, and social roles. In other words, a rite of passage changes who we are psychologically and socially. In the case of non-compliant sufferers of hemophilia, that transition was almost always lacking. There is no ritual of separation as parents continue to call several times a day. There is no statement by either the person with the disease or the people who care for them acknowledging that they are now responsible for their own life—not just figuratively but literally. And so our participants created it for themselves. This process was entirely personal and the young men found themselves in an extended transitional state, searching for some sort of resolution. Until that resolution was found, the medication became a target for asserting a sense of growing personal control. The medication and the needle became the symbol on which to hang a new sense of control and identity.

Control over the physical, psychological, and cultural state that had dominated every element of their lives was central to our participants’ move to a new identity. Unfortunately, there is no cure for hemophilia, but, in gaining control over his identity and establishing himself as something “beyond the disease”, the young man is psychically “killing” the hold the disease has over his life. He is, in essence, reborn as someone “with hemophilia” rather than a ”hemophiliac.” He moved from being in a state of unending transition into a fully realized person, rather than being an extension of the disease.

Having finally identified our two major conceptual themes, we now had to do something with them. First we developed a new campaign for our clients centered on the passage into adulthood. Working with our creative team, we changed the conversation from one of vague rebellion to one of control. Taking control of your regimen is a symbolic rebirth. Taking control of infusion means leaving your past behind, not just following the same old pattern. The focus was on defining your future through medication and redefining being a “hemophiliac.” Treatment would be synonymous with stripping the disease of its power and ushering in a whole new world of possibilities defined by the person with the condition.

We also knew that a traditional campaign wouldn’t have legs if it didn’t have a digital extension, so we developed an entirely new web presence aimed at fostering a community. The community would be closed to anyone who didn’t have the condition or who hadn’t been invited into the conversation by someone with hemophilia. In other words, control is exclusive to people with hemophilia and they have the power to limit or extend their world as they see fit.

At a more concrete level, users would also gain control over payment, appoint-ments, and doctors through the website, through which they could gradually transition into managing their own care over time, with a series of guideposts, acknowledgments and reminders. Content could be assigned based on how long they had been out of their parents’ home, whether or not they were living alone, and whether or not they were working regularly with a medical team to address the disease. All of this provided tools to manage the transition to independence.

This website also provided these young men with an outlet for sharing their experiences and stories, moving them from a sense of isolation—it’s decidedly uncommon to find someone else with hemophilia in your circle of friends and acquaintances—to one of community. The upside of this was increased support, a sense of belonging, shared advice, and more sustained, expansive interaction. Not only did it help increase compliance, it also helped broaden the conversation to other young men with hemophilia who were using another medication to regulate the disease. Jacob, a 19-year-old electrician expressed it by saying, “There aren’t that many of us so when we’re talking with each other it’s believable, it’s real. It keeps you honest with infusing.” In other words, it built awareness of and consideration for our client’s medication. And it helped the young men to feel like they were more than their disease.

Control over the physical, psychological, and cultural state that had dominated every element of their lives was central to our participants’ move to a new identity. Unfortunately, there is no cure for hemophilia, but, in gaining control over his identity and establishing himself as something “beyond the disease”, the young man is psychically “killing” the hold the disease has over his life.

Telling a story

The pharmaceuticals industry is extremely conservative and generally fixated on data. Numbers rule the marketing landscape, and while they do hire people to do more exploratory work, there are always a large number of naysayers in the room, bent on discrediting the work because it isn’t quantitative. Add to that that this was the very first time our client had ever funded this type of research, and it is worth noting it was with some trepidation that we prepared to take the client team through the findings, recommendations, and marketing plans.

Because of this, we chose to set the stage by telling a story, taking the client through each individual’s description of living with hemophilia. We began with a short, four-minute video meant to give a vivid, up-close overview of the cultural and psychological processes that shape patient behavior. Next, we unveiled large storyboards with details about each participant, walking the client from one to the next and presenting our findings. We concluded with the requisite PowerPoint with mock-ups of how the emerging strategy and campaign would unfold. Finally, we distributed a video with the “full” story of the participants, each having a ten-minute chapter.

The response? In addition to giving the green light to all of our proposals, the client asked that we share the work throughout the company as a demonstration of the power of qualitative research. In the end, getting our heads out of the data and getting into the lives of these young men made all the difference.