Evan Hall (he/they)
Hemophiliacs: The Forgotten Ready-Made-Solution Outcasted by Medicine, A Generation Remembered.
After interviews over the phone and in-person, Kathy finally welcomed me into her home nestled in Macomb County. Her husband Bill cooked burgers on the back patio as she gave a tour of the house. As an ameturer artist, and a good one at that, Kathy found meaning through her art. As my head turned left, right, up, and down, I saw the art that framed Kathy and Bill’s lives, much of it relating back to themes throughout their lives. Or, if there wasn’t a good explanation behind a work, Kathy was sure to find one that suited her taste.
I first met Kathy and her husband at a cafe in Ann Arbor during the summer, where I was living at the time. With all of us being fully vaccinated against COVID-19, we felt comfortable to populate a nearly empty space inside. Kathy purchased an order of crepes - a decision she would circle back to often, as diet played an important role for her. She described that as she aged, gluten and dairy products were becoming estranged friends to her digestive system.
You can notice Kathy simply by her presence. Walking into the cafe outfitted in pink pants and a grey sweater, the liveliness she exuded made it easy to identify her even with a mask on.
Entering a space, you never know the kinds of reactions you’ll get for the energy you bring. In college, while taking a physics course, my up-beat and flamboyant energy was a chemical deterrence to my mostly slouching male counterparts. My classmates were put off by my enthusiasm. I was shut out of conversations, never being heard for the ideas I put forth. However, the opposite could be said about the numerous courses I have taken where my energy is praised by my peers and teachers. The courage to present your authentic self, publicly or in an intimate setting, is a challenge.
One thing I learned about Kathy during our time together was that she would not back down from a challenge.
Kathy’s personal and health challenges began early in life. Born in 1959, and growing up in the 1960s, Kathy first faced mortality in her early years and late teens. Doctors appointments and hospitals began to populate Kathy’s life. She felt indifferent to her ailments. How could one feel connected to their own body when a mysterious illness has taken over? Kathy was told at 5 years old that should die before 10. A sense of mortality was the shadow that coated Kathy’s thoughts. To shed light on her dim beginnings, she joined the local 4H club to bring life back to her. She translated the hands-on approach to learning from nature into invigorating the natural sense of self she lost.
It would be years later when a new mysterious illness would again challenge Kathy to seek inspiration for life again.
Living with her husband in her early twenties, Kathy remained close to her parents in Sterling Heights. Although other options of physical escape from the memories of childhood were plausible, knowing the financial hardships of the early 1980s, Kathy situated her new family close to her parent’s house. Then, as summer blossomed out of the difficult Michigan winters, full of long dark days accentuated by uncomfortably bitter temperature, Kathy once again walked along the tightrope of a healthy life, falling ill to something that could be described as “deady”. The year was 1984.
In the beginning of 1985, a hemophilia treatment center reached out to Kathy’s then-husband, Michael, to enroll their entire family in a national study. Micheal’s familiality with the healthcare system went beyond the hemophilia treatment center, including hospitals, doctors offices, and emergency rooms. The invisible glue of time that held Kathy and Michael together lurked in a childhood where mortality alluded to reality.
Hemophilia is generally described as uncontrolled bleeding within joints. Michael was born with hemophilia. He was young and greatly afflicted by Hemophilia, yet adapted quickly to his insurmountable odds. A scrape on the knee from a friendly soccer game in the backyard of a neighborhood could mean certain death. A papercut would be annoying for most with the shooting pain of its slice, but could be the lethal bullet to Michael’s youth. Deterred from risk, Michael became obsessed with reading. He constantly studied, gaining applicable knowledge to leverage himself beyond his condition.
Sitting across from Kathy, I felt like she was giving a toast to the man that earned a lifetime achievement award. Her potent emotion caused her to set down her utensils, which previously had been well at work on the crepe. Bill, Kathy’s current husband, looked over them with a smile. I saw the smile of a man burdened with knowledge of Kathy’s life. A contraction of muscles well practiced over the years for Bill, who had experienced his own rendering of life at its hardest. Now resting on the table, his cool crisp grey hat with two feathers tethered to the seams, a nod to his humor, juxtaposed a smile to Kathy that appeared to speak to the paradox of their lives. A life filled with immense joy and coded in the sorrows that clench our hearts at the movies.
I knew such a smile from my Grandma. She too grew up with the challenges of poverty at her feet, where her bareskin often brushed the ground because her family was too poor for new shoes. The agricultural nature of her small town in Southern Illinois paled in comparison to the grandiose nature of what lay in the north-- Chicago. My grandmother married my grandfather after sparking love over curiosity at a science academy in their late teens. However, the unpredictability of science would bring a new proposition for my grandma in marriage, which was the chemistry of love. Love that proved to be complex and deceiving. After years of marriage and two children, my grandma discovered an affair my grandpa tried to keep quiet for years. A true betrayal of trust that would encode my grandma’s thoughts to this day. I sat in the passenger seat when she told me this story. I was at an age when infinite love and desire were possible. When she turned her head toward me as she descended through the mountains in the Subaru outback, I smiled with her. I smiled with Bill that day, knowing the value it presented to Kathy, like my grandma.
The complexity of love couldn’t escape Kathy and Michael’s unity through marriage.
Back in 1985, Kathy knew that an entire family survey, including Michael and their newborn daughter, was strange. Kathy was not living with hemophilia, nor was their daughter. What use would non-hemophiliacs be in a place researching hemophiliacs? Although Kathy minimally protested against the thought of reliving blood draws and testings, she and Michael agreed there would be no harm in entering the study.
However, the commitment of “do no harm” in the Hippocratic Oath taken by all physicians was masked in the following events. Without knowledge of what the purpose of the study was, Kathy found herself utterly baffled by her husband’s behavior. Months after they all participated in the study, Michael appeared unconcerned about a lack of follow-up. Mostly confused by the framing of the study and her role, Kathy phoned the team of researchers at the hemophilia treatment center to seek clarity. Yet, as with most quests for answers, Kathy’s was delayed a day as the female staff over the phone urgently pressed Kathy and her family to “come into [the clinic] tomorrow”.
Armed with a demand to know more, Kathy and her daughter were brought into a separate room than her husband as they walked back into the medical corridor just beyond the doors of the waiting room.
Kathy held her daughter on her lap; being as young as she was, a bounce of the knee was all that was needed to keep Kathy’s daughter distracted from the dry feeling of the patient examination room and presence of ominous individuals in white coats. In total, seven medical staff stood before Kathy. The conversation began with the outline that there was “bad news” and good news. To Kathy’s ears, the words of “bad news” resonated back to her childhood, but still the phrase in this setting was full of anticipation.
Kathy was positive for HTLV-3. At the time, common circulation of the Human Immunodeficiency Virus or HIV was still in its heyday from 1983. Medical staff that day reassured Kathy that because the test was based on the presence of antibodies, there was good news in light of a gloomy result. In reality, the medical staff that day had no idea what was going on within Kathy’s immune system as HIV mounted its attack. The more direct good news was the negative test of Kathy’s daughter.
Today, the fact that Kathy’s daughter didn’t test positive for HIV would puzzle physicians. Starting when she was born in April of 1984, Kathy began breastfeeding her daughter, which is a highly discouraged practice today among mothers living with HIV. Breast milk is one of the few distinct fluids that can transmit HIV, primarily between a breastfeeding parent and their child.
The first knowledge of Kathy’s new diagnosis was littered with explanations by medical staff, but lacked valuable information to what would come next for not only Kathy, but her entire family. Before leaving the patient examination room with the door only slightly ajar, one of the medical staff turned slightly to deliver a message of confidence outlined with a sigh of despair, “Keep it a secret.” Kathy would keep that secret nestled in her heart for years, even as it withered away hope in her mind.
Kathy went on to schedule her and her daughter’s next appointment, which would continue to be every six months. It would take another five years of testing her daughter until medical staff reassured Kathy all was okay. Even with a blank check of security resting in the fate of medicine, Kathy felt there were a lot of unanswered questions.
Kathy said, “[Michael and I] must have been the only people in the world.” The weight of a diagnosis, especially one that falls under the umbrella of chronic illness, can isolate us. The same drab dry patient examination room framed my visit to the doctor’s, where I received a new diagnosis of Crohn’s disease. My tears puddled in my words. I apologized to the physicians in front of me. They said, “Take you time.” How much time was long enough? The dominoes fell in a chain of worst-case scenarios, and the only thing that stopped my emotional outpouring was a subtle nudge of physician punctuality.
From across the table in the cafe, I couldn’t see tears forming in Kathy’s eyes as she delivered her diagnosis to me. However, beyond the horizon of her iris, I noticed the crevasses formed from years of erosion in telling this same story to others. I felt the delivery of her words were no easier than before, but after years of practice Kathy had created a script to ease her burden.
In fact, Kathy was not alone at the time of her diagnosis. The prevalence study conducted at the hemophilia treatment center revealed that 95% of individuals tested were infected with HIV. The results of the study were never given to Kathy. In Kathy’s own words, the “shot getting shot”,”
The closeness both in attachment and proximity predisposed Kathy’s parents to discover the news of the test results. Her mom wouldn’t mention it. The exposition of denial began to seep into the storyline of Kathy’s life. Her wonderfully intelligent husband used, at the very least, ignorance to keep himself afloat. Kathy felt terrible about it all. There was blame to be given, but to who? With staccato punctuations from behind her teeth, Kathy told with the gesture of a hand that her husband was not to blame.
The pharmaceutical companies at the time possessed a technology known as deterneget washing, where the blood would have components removed not useful or perhaps harmful in transfer, including infectious material. Nevertheless, the existence of such a technology was at a cost to the pharmaceutical industry. Political power came to be a bad assessment of health outcomes. The bottom line was “too important” for these companies. Could only a few cents per liter of blood have prevented an entire generation of hemophiliacs from dissipating? We will not know, and Kathy could care less about a hypothetical answer. She sees the billions of dollars made of hemophiliacs as a paper trail of imminent betrayal at the hands of corporate greed.
The crepe was entirely gone in front of Kathy. The remnants of a light chocolate sauce and caramel syrup glossed in streaks the white plate. Her silverware rested upon the plate, signaling the end of an opus of calamity and confusion. As our stomachs settled from our meal, the digestion of Kathy’s story would slow not only our peristaltic contractions, but our own breath.
5 years went by. Kathy told me it took a great weight on her to remain secretive. Where that weight went over years since then as Kathy sat across from me, I would never know. She purposely kept away from society. It would take a meltdown in 1989 to mark an inflection point in Kathy’s life.
After obvious fear of losing housing and jobs because of her status, Kathy finally arrived back at the hemophilia treatment centers. Not to meet with her physician, but with a part-time social worker hired due to an increased demand from clients. Kathy went to talk to her in a small office, well-suited for those in the profession who enjoy close quarters. During the four hours with the social worker, Kathy cried and sobbed. She feared for her daughter. She outlines the difficulty of not being able to talk to someone about her status. The social worker listened and provided comfort to Kathy. With little in terms of resources or direction, the social worker asked Kathy if she would be interested in developing a support group.
Connecting with others in February of 1989, Kathy met women in the Detroit area who represented a spectrum of people with HIV. Those who were directly affected by the virus. Those who had husbands. Those who had children. There was a sense of safety for those in the support group to utter frustrations and feelings that had boiled over years earlier. For Kathy, it meant a world full of people navigating similar treacherous paths and the beginnings of a career in activism. By nature of the subject matter, husbands were forbidden to come. The husbands left out during these support groups felt that their wives gossiped to their friends about them; they saw these support groups not as productive but merely as superficial. However, as Kathy would attest, the emotions that fueled conversations were those of the unknown and everyday differences life had been like since diagnosis. At some, these husbands, in the stepwise fashion of jealousy, created their own support group. In a way, as Kathy pointed out, “there was good to come out of it.”
As Kathy positioned her body to a more relaxed position, she turned to her husband Bill, explaining how the support group continued to raise questions for her, including her marriage. Someone at the support group told Kathy to divorce her husband. Kathy’s eyes met with Bill as the conversation reached a cadence. They shared a bond too strong to break with any political rendition of what marriage should be. Kathy would never leave Michael, but the fears around confronting him linger in Kathy’s thoughts today.
At a national funding meeting in 1989, Kathy and members of the support group traveled to share their experiences to other physicians. The once loner women, who had been chained to silence behind closed doors, were finally making noise in a public format. Kathy knew how to identify a problem, and although she did not have every solution, she grasped a powerful ability to get one anyways. This was evident when a few crumbs landed in Bill’s beard at the cafe. While continuing to talk to me, Kathy inspected his beard and ensured his cleanliness was up to par. Such attention to detail and effective communication would land Kathy a position on an advising board of 30 individuals, including four HIV+ women, public health officials, doctors, and other activists for Clinton during the early 1990s. The committee demographics spoke to a national shift around HIV, where the problem didn’t lie in groups of people, but behaviors familiar to all.
What didn’t bode well for Kathy’s eager activism was the beauricatic hills and valleys of politics infused in medicine. My head began to perpetually nod as each one of her points echoed a similar story I had come across in the modern HIV epidemic. There are the disclosure problems for adolescents on their parent’s insurance who want to start PrEP. HIV medication remains a costly feat for individuals living with HIV, some who wager paying rent and living for another week. I felt the memories of Kathy banging her head on the wall to replay depictions of my activism work each week.
Kathy’s voice grew pointed on the topic of patient confidentiality. Wives of husbands who were hemophiliacs, most likely infected with HIV, described the hardships of supporting their husbands during these trying times. The irony that spoke to the heart of the problem was that the wives themselves had no clue their husbands had HIV. Meaning, they themselves would need sheer courage to get tested for HIV if they suspected something was wrong. Medical staff were not allowed to disclose an individual's HIV status to their partner. Kathy called this “total bullshit.”
The guidance of activism in spaces advocating for those living with HIV brought Kathy great joy, but the reality that Kathy herself continued to live, with a raging virus with no end, wore on her. The world was like “walking through a prison,” only Kathy’s body served as the prison’s cold textured walls and deep seated trauma with a mind of hope to one day break free. The chance to break free would inch its way closer for those living with HIV when a new cocktail of medication known as antiretroviral therapies opened on the market. The medications were highly toxic at first, however. An AIDS drug study at the time had Kathy’s body serving as a fine tuned flask, calibrating the correct dosage amount for a woman her size. Most trials of AIDS medication were tested only on white men who have sex with men (MSM). The study burdened Kathy with allergies and side effects that echo in her current health today.
The Phase I clinical trials meant Kathy was readily familiarized with the hospital, yet her daughter was “freaked” out to go to the hospital. The hospital for Kathy’s family served as a necessity to life, but also harkened an ominous tone of doom you could only hear when the silence of the corridors lasted into the night.
By the time Kathy’s activism reached full steam, Ryan White, a young boy from Indiana living with hemophilia, became a household name for the AIDS epidemic. Ryan would fight for better AIDS healthcare coverage until his death in 1990. Although the midwestern charm of this middle school aged child would bring more empathy into the epidemic, it remained only in the national spotlight, failing to trickle down to everyday individuals.
In Kathy’s support group, a mother of a 13 year old son who had AIDS expressed the immense trauma her child was going through. No school would allow her child to learn. The local playground with merry children and mothers all around would seemingly dissipate into thin air whenever they arrived. It was too much for Kathy to grasp. She decided to show her daughter the course of humanity by scheduling “play-dates” with him. This would bring the theme of mortality in Kathy’s daughter’s life in the shape of a friend, who died just years later. Kathy constantly thought about her daughter, planning only six months in advance. Kathy found communities coming together from her playbook of activism and support system that would carry the responsibility of raising her daughter when Kathy passed.
Kathy pointed her finger out at me, “Notice, I did not say if I died, but when.” The overbearing presence of mortality had weaved itself into the language of the future, and soon again would rear its ugly head.
It is April of 1982. The setting is an ordinary hospital. The characters, Kathy, Michael and Kathy’s daughter are situated in a semi-private hospital room, one they could barely afford. The prognosis was buried in the ticking of a distant clock. Michael, Kathy’s husband, had developed lymphoma, an end-stage diagnosis for AIDS patients. The viral load in Michael’s body was well beyond 2.5 million copies, and forthcoming advancements of antiretroviral therapy would never reach him. Michael died that day. Kathy said the “timing was in the night,” and with a heavy face she retracted her lips staring directly at me.
There is no question that mortality danced in the lives of Kathy and Michael. In this case, mortality had the leg up with Michael. After his death, the once striving trio turned into an uncertain mother daughter duet.
As someone who captured this story with Kathy, I could not settle into the emotions scattered throughout her story. My sense of mortality is a tangent to my everyday life, yet Kathy ushered my perspective into a whole new understanding.
The HIV/AIDS epidemic continues to affect marginalized communities, including people of color, and minoritized sexual & gender communities. However, with the ability to stop the problem of HIV virus transmission through the blood quickly and efficiently, medical discourse essentially stomped out cases among hemophiliacs and their families. What is left unsaid is that the stories of those who contracted HIV from this delivery live on today. Their stories are nuanced and concealed, many hiding in the shadows of stigma adjacent to those living with HIV today.
Kathy remarried her current husband Bill at age 40. By this time, Kathy was an international name in the activism community for women living with HIV. Kathy wanted to start something new, which prompted the creation of the Stitches Doll Project with a goal to share the voices of women living with HIV around the globe. She currently works as a full-time sociology professor, talking about women with HIV and the broad implications of mental health issues.
Kathy’s ultimate goal in each of her factions is to reach out to women. Few messages at the time were tailored to women, for which Kathy took it as a battle cry to ensure there would be many to come.
In my fleeting final glances toward Kathy and Bill, I noticed that the story she told me in the cafe that day is forever etched in her body. A virus that has occupied her immune system for nearly 36 years lives below the radar with Kathy’s highly active antiretroviral therapy (HAART). Her face is “wasting away”, a term used in the community to refer to calcium deterioration because of the harsh nature of HAART. The crescent ridges of her cheeks accentuated a smile as wide and deep as a canyon. Though her stature was small, Kathy rose with grace. Her goodbye was a subtle invitation to the next gathering we would enjoy.
Kathy is living with HIV, and we must continue to wonder the magnitude of her strength, for it is the arch of a doorway to a new perspective on life.