Sweat dripping down his face and back, Timothy Brown leaned against the brick wall. He was excited and out of breath, his heart pounding frantically in his chest. The deep beat of techno music seemed to pulse through the wall and pull him back into the packed club. In the 1990s, Tresor was a legendary underground techno club. It was the place to be in Berlin, with lines often stretching down the block. Located in the center of the former East Berlin, its name, tresor, roughly translates as “the vault.” This one, unlike the crypts once concealed in Gothic cathedrals, was located in the defunct bank vault of a gone-out-of-business department store.
Timothy loved Berlin; he loved the nightlife, his friends, his boyfriend. Life couldn’t seem to get better for him than it was in Berlin in 1995. The place was experiencing a rebirth as people from all over the world flocked to the reunified city. In Christopher Isherwood’s memoir, filled with his experiences in Berlin in the late 1920s and early 1930s, he writes, “Berlin meant boys.” Berlin in the 1990s was reminiscent of that earlier time of sexual liberation, before World War II. Timothy was experiencing that kind of freedom.
People who knew Timothy found him terribly charming. He reveled in being with his friends, flirting with everyone, and filling up small spaces with his staccato laughter. He was a student in Berlin, still unsure what he wanted to study. To pay the bills, he worked at Café Einstein, located right at the foot of Checkpoint Charlie. This famous Berlin Wall crossing point, where travel was once restricted between West and East Germany, was now a bustling tourist destination. The café was constantly packed with travelers.
Standing outside Tresor that summer night, Timothy thought about Marcus, an old boyfriend he’d dated for six months nearly two years earlier. Marcus had been constantly jealous, always imagining that Timothy was off chasing other men. They were traveling in Greece when Marcus abruptly broke up with him on the island of Mykonos. Timothy was miserable when Marcus left him. Now, waiting on Timothy’s answering machine was a message from the man he still thought about. Marcus wanted to see him.
In the face-to-face meeting, though, Timothy’s daydreams were shattered. Marcus wasted no time in getting to the point. “Hey, I got tested for HIV and I tested positive,” he said. “You need to get tested, too.” Timothy didn’t take the news lightly. This was the mid-1990s and he knew HIV was the leading cause of death in Americans age twenty-five to forty-four. The previous March, Timothy had said good-bye to a dear friend who had been diagnosed only a year earlier. Everyone who was diagnosed with the disease died, and Timothy had lost so many friends. HIV was a death sentence. There was no good treatment, and no cure.
Timothy knew that just because Marcus was positive for HIV didn’t mean he himself would be. In fact, Timothy was sure he wasn’t HIV-positive. He had been pretty careful. However, one night stood out in his mind. A night before he’d ever met Marcus. Usually, when he had sex, he asked his partner to not ejaculate inside him. It wasn’t a perfect solution, it couldn’t protect him from the diseases he knew were out there, but it was better than nothing. One man he had been with, Jeremy, had blatantly ignored that request. It was to this man that Timothy’s thoughts began to turn. He had seen him only once since that night. It was a casual meeting. As he spoke pleasantries, only one thought dominated his brain: You’re the guy that ejaculated inside me. Was it possible that Timothy had infected Marcus, that he himself was HIV-positive?
A few weeks after Marcus announced he was HIV-positive and that Timothy needed to get tested, Timothy sat in a small, clean clinic located in the Institute of Tropical Medicine of Charité hospital. It was 1995 and the first time Timothy was seeing a doctor since he’d moved to Berlin. A decade later, after he was diagnosed with cancer, he would come to know the hospital well, its rooms and walls becoming like a second home to him. But this was his first time here, and he had trouble finding his way in the labyrinth of halls. As he sat in the waiting room of the tropical medicine clinic deep within the belly of the hospital, he realized he was feeling the same anguish he’d felt in the clinic back in Seattle when he got his first HIV test years before. The waiting was terrible. It had taken weeks to get the results.
While the kind of test Heiko Jessen gave Christian Hahn is often used today to detect early HIV, in 1995 these tests were new and rarely used. Instead, the common test was the ELISA, or enzyme-linked immunosorbent assay. It determines whether or not our immune system is responding to the virus. That is, the ELISA detects the antibodies our body makes against the virus. Any pathogen that invades our body makes itself known to the immune system by showing little pieces of itself on the surface of the cell it has invaded. These pieces of a pathogen, called antigens, invoke a response from the immune system. Once the body detects the antigens, distinct for each virus and bacteria, it mounts an immune system attack.
The immune system attack comes in two waves. The first wave is from the innate immune system, which is composed of a farrago of deterrents. It includes cannibal-like cells that eat other infected cells, and inflammation that creates a physical barricade between the infection and the rest of the body. The innate immune system can be soldiered up quickly in response to a pathogen because it uses the tools already on the shelf.
However, the second wave of the immune system attack, from the acquired immune system, takes more time. The acquired system develops new weapons designed for the invading pathogen. To mount its attack, the acquired system uses the blood’s infection-fighting white blood cells, specifically lymphocytes, comprised of T cells and B cells. T cells are named for the location where they become differentiated from stem cells, in the thymus, and B cells for their differentiation in bone marrow. For HIV, this “custom-made” immune response takes time, from weeks to months. The average time is about 25 days.
If you come upon a nail and then invent a hammer so you can use the nail, you probably wouldn’t throw away the hammer after you use the nail. After all, you might find another nail. Just so, once the B cells make those antibodies for HIV—or any virus—the infected person’s immune system will always remember the virus and continue to make those same antibodies, just in case, for the rest of the person’s life.
To perform the ELISA test, we take a small amount of purified blood, which is called plasma and is a translucent yellow. We dilute it several hundredfold, and put the diluted plasma into the well of a so-called 96-well plate. This plate, made of clear plastic, is molded with 96 tiny dimples, or wells for holding liquid. The amount is tiny, the size of a few raindrops. Inside each well is an antigen, a piece of the virus just large enough to attract the attention of the still functional immune system contained in the well. If the immune cells immediately recognize the virus and attack it, the test is positive, indicating that the person from whom the blood was taken is infected with HIV.
But how do we know if the immune cells are attacking? We don’t need lab technicians to peer through a microscope at what is going on. In the case of a positive result, when the person’s antibodies bind to the foreign intruder, the fishing line is reeled in. The antibody is captured on the hook and a brilliant purple dye on the other end of the fishing pole is released. The well turns purple. The darker the color, the stronger the immune system response. If a person’s diluted blood plasma makes no antibodies to HIV, they have never seen the virus before and no purple dye is released. Go fish.
The ELISA is labor-intensive, requiring skilled technicians to prepare the materials, load them onto the microplate, carefully wash the plate, and read the results. It is a very sensitive test: It accurately diagnoses HIV in 99.9 percent of those infected. But there are two big weaknesses. As we’ve seen, it takes our bodies time to make antibodies against HIV, so a person can be infected for months and still be negative on an ELISA. For this reason, ELISAs aren’t typically given until at least six weeks after an exposure to HIV. The ELISA is very accurate if you’ve made antibodies to the virus, but not accurate at all if it’s too early after infection. The second weakness is the amount of time the test itself takes to run—about two weeks. These are two weeks full of torment. In 1995, the year Timothy tested positive, it was estimated that approximately one-third of patients who tested positive for HIV did not return for their results.
Today you can buy a rapid HIV test, called OraQuick, at a local pharmacy. This test is like holding an ELISA in the palm of your hand, but even better, since it requires no blood from you. Using a swab, you collect mucosal transudate from your mouth. Unlike saliva, which comes from a gland in the mouth, mucosal transudate resides in the cheeks. This clear fluid mixes with saliva in the mouth, the two indistinguishable. The transudate, however, as it comes from the cheeks, is enriched with antibodies. While there isn’t any measurable HIV in the mouth, the antibodies that every HIV-positive person makes are released into their tissues and blood. These are what the test is swabbing for. The swab is placed in a vial containing replica pieces of HIV. These replicas look like HIV but they can’t infect anyone. If they are present, antibodies attack them. This causes a color-changing enzyme to react. In about 20 minutes, a line will appear in a box on the device (much like on home pregnancy tests that so many women have inspected with emotions ranging from hope to fear). On the OraQuick test, if a second line appears, you are HIV-positive. The home test is very accurate although not quite as good as the laboratory version. Today, all this can be done in your living room, but in 1995, the long wait ended with a potentially life-changing visit to the doctor. Jessen worries about the downside of home HIV tests, though, saying, “It’s not news that anyone should have to deal with alone.” His opinion is shared by other physicians, particularly family doctors, who believe that counseling is an important component of an HIV diagnosis. It’s a difficult balance between making HIV testing convenient and making sure that patients receive the support they need. Apart from the emotionally traumatic aspects of an HIV-positive diagnosis, new testing technologies came at just the right time, making possible a critical step forward on the road to the cure of HIV.
The tropical medicine institute at Charité hospital was timeworn, with faded paint and old furniture. Patients describe the clinic as dark, with only a soft gray light filtering in from small upper windows. A poster on the wall read AIDS GEHT ALLE AN PROBLEM (“AIDS Is Everyone’s Problem”) and presented black-and-white photographs of men and women, their heads bowed as if in prayer. Timothy was called into a small room. He shook hands with a doctor who held his test results in his hand. Timothy’s lips trembled.
On hearing a diagnosis of HIV, some patients seem to know or suspect, some can give the exact time and place they were infected, and others are shocked and never saw it coming. The immediate impact of the diagnosis, whether a person falls apart or is brave for the medical staff, is like a snowflake, as unique as the person.
Timothy wanted to tell everyone he knew. He told his boss at the Café Einstein. He told his coworkers. He told his friends. He says, “I did not want to be quiet.” Over and over again, he spoke aloud those terrifying words he had heard from the doctor. He was HIV-positive. Among all those he told in the first few weeks, two people were notably absent. The first was his mother. His mom was ill with breast cancer. He felt he couldn’t add this burden to her life. If he told his mother, he knew she would be scared for his life.
When Timothy’s mother met his father, she was a teenager, captivated by an older man she barely knew. She was a Christian woman from a strict family, overcome by teenage hormones. She was shocked to learn that not only was she pregnant but the father of her unborn child was already married with children of his own. He left her. Timothy grew up without a father. Timothy’s relationship with his family was fragile. It seemed the family could absorb great pain, each person buckling under the weight but still holding on.
The second person he couldn’t tell was the man he believed infected him. Jeremy. Most physicians will tell their patients to alert all the partners who could possibly be infected and especially the person they believe infected them. This is a public health service, to keep those who are infected from unknowingly spreading the disease further. Timothy wasn’t sure where Jeremy was; he couldn’t even be sure he was the man who had infected him. He had seen him only once since that night some years before. Timothy could be fearless, but something about Jeremy made him recoil from finding him.
Of the many people he did tell, the first person was his boyfriend at the time. His boyfriend’s reaction was extreme. He immediately burst into tears of anger. “You’ll be dead in two years,” he said, pounding his fists on his legs. “Your life is over.”