The streets were bursting. The crowd at the March on Washington for Gay, Lesbian, and Bi Equal Rights and Liberation became overwhelming. Dr. Heiko Jessen was finding it difficult to remain calm. Over a million people attended the rally. It was a sunny, mild day in April 1993. The cherry blossoms were at the end of their bloom, filling the mall with soft, pink and white blossoms. The flowers fell from the trees like a fragrant snow, filling the streets with beauty. Jessen needed a quiet spot to himself. He found a solitary bench far from the talks and demonstrations. As he sat, thousands of miles away from his home in Berlin, one circular train of thought occupied his mind: Andrew. While Andrew stood only a few hundred feet away in the crowd, emotionally he was distant. Their relationship was faltering. Andrew had cheated on him, yes, but Jessen forgave him because he loved him. Now Andrew was complaining of a cold.
For most people, a family member complaining of a cold is thoroughly normal. For physicians accustomed to easing the fears of their family and friends, a cold is certainly nothing to be worried about. But Jessen is not like most doctors. As Andrew complained of a sore throat, lethargy, a fever, and then a rash, Jessen became increasingly concerned. His thinking was guided by his experience in his small clinic in Berlin. Every day, he saw the same constellation of symptoms. He spoke to young men who were battling what appeared to be the flu. Yet, in the back of their minds was one event. A night spent with a partner they had just met, a party they couldn’t quite remember, a struggle to put on a condom. Many patients were highly specific, detailing their exposure, able to remember the day and hour they became infected. This is because an influenza virus didn’t cause their illness. It was often another, very different virus.
In medicine, a prodrome is a set of symptoms that heralds the beginning of a disease. These first symptoms are distinct from the disease itself, with traits shared among similar pathogens. Viruses, for example, share a common set of prodromal symptoms. Before we run a fever, get the chills, and become hopelessly nauseated, we usually get an achy, tired feeling. This feeling serves as a warning to our bodies, a signal that we’re about to get sick.
Some viruses, like shingles and other herpes, share similar beginnings as the virus begins to invade. The virus first goes through an incubation phase. Like an egg sitting in an incubator, the virus hides in our bodies, waiting until it’s ready to make its presence known. It is rapidly expanding during this time, madly replicating. Incubation can last anywhere from minutes to decades, depending on the disease and the individual nature of the person infected. This stage provides the virus’s chance to build itself up; it’s almost as if the virus is training for the fight of its life. By the time it’s ready to move to the next stage, revealing the first signs of disease, our immune system is already losing the fight.
HIV, like many other viruses, spends the short incubation period wisely. The virus makes millions of copies of itself, all before the body can properly identify it and mount a tailored attack. By the time acute infection begins, tens of millions of viruses have invaded, not only attacking our blood cells but entrenching itself in our tissues. The virus wipes out the immune system in the gut. It forms a long-lived reservoir in multiple organs, including lymph nodes and bone marrow. The virus hides out in “resting” immune cells, so called because they are no longer dividing. The virus integrates itself into the DNA of the cell and then goes dormant. When the cell wakes up again, years, even decades, in the future, the virus will wake up with it, insidiously using the cell to make more of itself.
These resting T cells are like rare gems in a mine of rocks. Despite their scarcity, HIV is able to discover them. In its isolated hiding place, HIV can remain undetected for decades, beyond the touch of antiviral drugs. The latent virus remains present but is not obvious, at least to the immune system or to our drugs. This is why we can’t fully remove the virus with the therapies we have today. No matter how good our drugs are at tackling the virus, they cannot reach the hidden reservoir of HIV in the resting immune cells. Bob Siliciano, a researcher at the Johns Hopkins University School of Medicine, describes the challenge simply: “You are stuck with the virus unless you get every last latently infected cell.” Even if an HIV-positive person has taken antiviral drugs for decades, even if they’ve eliminated all detectable virus in the blood, once they stop taking the antiviral therapy, the virus comes roaring back, returning to the same high levels it enjoyed before any drugs were taken.
In less than one year, the virus becomes a part of our cells and ourselves. By the time we begin to feel the first mild symptoms of the disease, the virus has enacted wide-scale irreversible damage on our bodies. Yet we remain unconcerned, naively believing that all we’re suffering from is the flu.
This is why Jessen was distressed to hear about Andrew’s cold. Combined with Andrew’s infidelity, the picture was worrisome. Jessen turned the facts over in his mind, doubting that he was right to be worried—was he just being overanxious about the man he loved? This is the problem with treating your loved ones, he thought. You can’t trust your own judgment. While it’s generally accepted that doctors shouldn’t treat their family members, they frequently do. In the United States, more than 80 percent of physicians have prescribed medications for a family member. While Jessen knew he was breaking the boundaries of the patient-doctor relationship, he couldn’t help himself. He knew it would alarm Andrew, but he had to speak openly with him. On the plane ride back to Berlin, he laid bare his fears. Andrew, nervous, agreed to an HIV test.
Jessen performed the test himself in his clinic in the gay neighborhood of Schöneberg, in the former West Berlin. The clinic took up the second floor of an ornate building built at the turn of the twentieth century in the opulent Beaux Arts style. The floor was divided into space for a clinic and an apartment where Jessen lived. Returning to medicine after German reunification in the early 1990s had not been easy. There were limited opportunities for doctors to establish their own practices. In a country with universal health care, the German government tightly regulates medical providers, including the opening of private clinics. Germany has since experienced a shortage of doctors, but in the early 1990s, there was a surplus, which made new clinics near impossible. Jessen managed to squeeze in his request just before the government temporarily shut down all new private clinic applications. Today, new clinics rarely open; instead they are handed off from one physician to the next.
For his practice, Jessen created his own medical training, outside the constraints of academia. He devised a combination of specialties that would cater to the specific health needs of gay men: primary care, infectious disease, and sports medicine. He was particularly interested in helping vulnerable gay teenagers with no place to turn, who could come to his practice for treatment, counseling, and understanding. Jessen had completed specialized training in infectious disease for obvious reasons. He included sports medicine because he knew gay men spend time at the gym and subsequently had sports injuries. He found like-minded doctors to join his new practice, including a counselor trained to attend to the psychological needs of his patients.
Renovating the old apartment into a new, fresh clinic with the modern aesthetic Jessen wanted proved to be a challenge. Ever the family doctor, Jessen made house calls in the neighborhood during the protracted renovation. Jessen’s parents, who lived on the family farm in Northern Germany, came down to help. It took three months of scraping, plastering, and painting to get the walls of the clinic ready. Jessen’s supportive family was always close by, one way or another. A few years later, Arne, Heiko’s brother, would come to work for him as a physician in the clinic.
Heiko Jessen had grown up on his family’s farm, working with cattle after school and summers. Because Jessen was the eldest son, his grandfather was adamant that he one day take over the farm himself. Their small village had even celebrated when Jessen was born, for his birth was seen as extreme good luck, a son to carry on the family tradition. Yet his father had other ideas. Since he had been pressured into becoming a farmer like his dad, he wanted his son Heiko to find his own path.
After Jessen finished his medical school studies in Berlin, he moved to San Francisco for his medical fellowship and to see what the United States had to offer. In much of the world, HIV was ending lives in rapidly growing numbers. This was especially evident in San Francisco in the late 1980s. Young male patients, desperately ill, overwhelmed hospitals, where no effective treatment could be given. The scenes were hopeless.
For Jessen, a young, gay physician, it was simply too much. It was the first time he had been exposed to the enormous impact of HIV in the gay community. In San Francisco, Jessen says, “gay life meant HIV.” He felt himself withdraw from medicine. The sight of so many young men destroyed by disease made him question why he wanted to practice medicine in the first place. One thing he was sure of: He had no future in treating HIV patients. He couldn’t handle it. He returned to the German countryside, feeling confused about his future. Should he take an easy path? He considered becoming a country doctor. The simplicity of being settled near his family’s farm was tempting.
This all changed in 1989, the moment he heard that the Berlin Wall had fallen. He immediately packed his bags. Part of this rush to return to Berlin was to take part in the enormous cultural experience and celebration of his city and country. For Jessen and others flocking to the city, Berlin had become “a big party; in the East everything fell apart, there were no rules, no rent. . . . It was the perfect escape from being a doctor.” When he was once again in Berlin, Jessen relaxed into the party scene. For six months, he stayed away from medicine, filling his days with friends and parties. Beneath a sea of celebration, he tried to numb his mind to the horrible cases he had seen in San Francisco. It seemed to be working. The young, ambitious, brilliant physician was able to pursue a life outside a hospital. Here was an urban gay culture that was far from the culture of fear and despair he’d found in San Francisco.
Eventually, he rented a small apartment in the Schöneberg neighborhood in the former West Berlin. The neighborhood was quiet compared to the raucous parties and the squatter apartments of what used to be East Berlin. The neighborhood was leafy green, full of tree-lined streets. Small neighborhood gardens sat nestled between old, ornate apartment buildings. The neighborhood still bore scars from World War II: delicately sculpted, Baroque-style buildings stood next to newly constructed monstrosities sporting ugly, flat facades, the result of speedy patch-up jobs following the end of the war.
One night, at yet another boisterous party, he met a young American. The party was held, as so many were, in a squatter’s apartment, which still held remnants of former occupants, former lives behind the Iron Curtain. As Jessen worked his way through the crowd, Andrew suddenly stood out. The American looked like a teenager in high school. His youthful complexion and bright eyes suggested a happy-go-lucky personality. The child of West Coast liberal parents, Andrew was charismatic, spontaneous, and adventurous. He embodied the complete opposite of Jessen’s measured personality. That night Jessen, as he describes it, met the love of his life. This one man would rouse Jessen to pursue an HIV therapy without precedent.
There’s no sign outside the door of Jessen’s clinic. Instead, a humble sign in the window lets you know there’s a medical clinic within. You enter the building through a dark, dirty vestibule. In front of you an aged staircase, dusty and winding, with no natural light, leads four flights up to the clinic entrance. The stairs serve as a fearful anteroom for patients expecting bad news. These were the steps Andrew climbed as he met Jessen at his clinic and home. They had returned from DC a few weeks earlier. The clinic was open seven days a week and didn’t close for holidays. Andrew always knew where to find Jessen. The wall that separated clinic from home was more a thin membrane; it was impossible to keep Jessen from his work.
Jessen broke the news to Andrew. He had given so many HIV diagnoses before, to so many young men like Andrew. He was gentle, as usual, but this was different. He was diagnosing his own boyfriend, his partner, the man he loved and trusted. They held each other in Jessen’s apartment, tears streaming down both their faces. It was 1993. Everyone with HIV died of AIDS. There was only one drug available to treat HIV—AZT (azidothymidine)—and it wasn’t able to keep people alive.
Jessen’s thoughts immediately raced to the researchers he knew and to an upcoming conference. He would do anything he could to keep Andrew alive. In the back of his mind, he considered his own risk. He’d had sex with a man who was HIV-positive. Intellectually, he knew he should get tested, but he pushed this thought down. He rationalized his reluctance by saying to himself that Andrew needed him right now. He would think about testing himself after he found a therapy for Andrew. Despite the fact that he was a physician, that he knew how deadly the virus was, he remained stuck in his denial.
Andrew felt lucky to have Heiko Jessen in his life. His friends, however, were not so trusting. They believed that Jessen was making up the diagnosis. They thought this doctor was manipulating the result in an effort to exert control over Andrew. Even after another physician confirmed the diagnosis, the friends remained paranoid. They tried to convince Andrew that it was a conspiracy, even going so far as to say that activists from ACT UP, the influential AIDS advocacy group, had infected him. Despite these influences, Andrew believed and trusted Heiko. He was HIV-positive. Since Jessen was going to push the boundaries of existing HIV medicine, that trust was about to get the ultimate test.
But Andrew was never to become one of the Berlin patients who are famous in research circles. He left both Jessen and Germany. Andrew’s gift was the passion he gave Jessen to pursue a novel and risky strategy against AIDS. Jessen’s experience with Andrew fueled his commitment to be a new kind of family doctor, one who had the courage, the audacity, the temerity to pursue a cure for HIV. This passion would lead him to treat two men who would change medical history and would, in the process, each receive a title befitting a mystery novel: the Berlin patient.