It was almost Christmas. Christian made his way home to the small town he grew up in, in the German countryside. He was excited to go home and see his family. Christmas was always special in his house. He was close to his parents and sister and missed them, living hours away in Berlin. Christian’s mom greeted her son with a tender embrace. She worried for him, her only son, who harbored a deadly disease.
Arriving at home, Christian found the house was decorated in the familiar way he remembered from his childhood. His mother had begun baking weeks before Christmas, filling the house with cookies and sweets. Garlands twisted their way around the house, and everywhere lights and candles softly glowed. On Christmas Eve, they decorated the big spruce tree with lights and ornaments, filling the room with the scent of evergreen. They ate sausages and potato salad on Christmas Eve, a simple menu compared to the feast coming the next day. On Christmas Day, they ate a large turkey, the extended family all coming to Christian’s parents’ house, which was filled with delicacies. All year, Christian craved the green salad they would eat on Christmas Day. Christian’s uncle grew the endive himself, bringing the salad to the feast fresh from his farm. “Of course you can buy the salad, but it isn’t as special,” says Christian, remembering how precious the tradition felt that particular year.
As he sat at home that vacation, he felt different, more confident. On the snowy day in November, he had felt clean, pure, purged of the virus, and yet he hadn’t had the courage to completely stop taking the drugs. Off and on he had taken them, unsure of what he should do. He had refilled his antiviral drugs before coming home for the holiday. Now here they sat in his childhood home, seemingly challenging his inner self. If he really believed he was free of virus, he reasoned, then he could stop altogether, be free of the drugs.
A shy man who usually did exactly as he was told by his doctor, he had developed a new confidence in himself. He was ready to go against Jessen’s prescriptions even though he trusted his doctor completely.
The final moment of his decision to stop taking the medication came just a few days after Christmas. Christian stood in the doorway of his childhood room in his parents’ home as his mother stopped by, nonchalantly asking him about taking his medication and how it was going. Leaning against the wooden door frame, Christian told her simply, “I can’t continue.” He said no more; he couldn’t quite bring himself to give her the full details of his own powerful feelings of recovery. Although worried, she trusted her son to make his own decisions. He had spoken only a single sentence, but somehow saying it out loud made it feel real. Christian felt committed by his statement to his mother. It empowered him to make the final decision for himself. From that day on, he no longer worried about schedules and when he needed to take his medication. He was free. He would never again take antiviral drugs. As Christian contemplated his new freedom, Jessen stood miles away in his clinic in Berlin. The clinic stayed open on Christmas Day and Jessen was working.
At the end of 1996, Jessen nervously called Julianna Lisziewicz. He had known Lisziewicz for only a few years, but they had become close friends. He had met her while training in Rob Gallo’s lab at the NIH. Lisziewicz loved talking to Jessen about Germany, where she had gotten her PhD at the Max Planck Institute in Goettingen before joining Gallo’s lab for her postdoc. In the 1990s, Gallo’s lab was where every young scientist interested in viruses wanted to be. It was “likely the largest laboratory in the world,” says Lisziewicz, remembering the fast-paced energy.
Lisziewicz, far ahead of her time, was interested in a gene therapy approach to treating HIV. She devised a clever idea based on basic cell biology. Genes are expressed in cells by tiny single-stranded pieces of RNA called messenger RNA, or mRNA. It’s called a messenger because it carries the blueprints of the cell copied from the DNA of the cell’s nucleus to the construction plant, where that message directs the proteins the cells need. Lisziewicz’s idea was to make small pieces of DNA complementary to the mRNA that HIV uses to direct its genes. Those little bits of DNA could bind up the viral RNA, thus stopping the ability of the virus to make more of itself. These small bits of gene-stopping DNA are called antisense oligonucleotides. Lisziewicz’s results looked beautiful in cell culture, and the project was quickly moved to clinical trials.
In six months, Lisziewicz had gone from quietly doing a side project that she knew Gallo wouldn’t approve of, to being appointed head of the antiviral unit. In that position, her contacts and influence grew. Lisziewicz could both conduct successful research and raise money. In 1994, it seemed that the right time to leave the NIH had arrived, and she started a nonprofit company, the Research Institute for Genetic and Human Therapy (RIGHT), with Franco Lori, a colleague from Gallo’s lab.
All through these changes, Lisziewicz stayed close friends with Jessen. In 1993, when he was desperate for some kind of experimental therapy to give his boyfriend, Andrew, she was there, providing a drug that no one else had yet used for HIV. When Jessen decided he wanted to perform a small trial of the drug at his clinic, Lisziewicz was excited. Jessen was in a perfect position to conduct such a trial. His clinic was, and still is, unique because of the large number of patients who are diagnosed soon after they are infected with HIV. Jessen’s patients, because they trust him, will come to him early with their fears and possible risk. For a clinical trial, the setup is near perfect. In fact, Lisziewicz says that at the time, “no one else in the world could have done this trial.”
Not only did Jessen have the right patients, he was intensely interested in early intervention for HIV, inspired by his own personal experience with Andrew. In only a few months, Jessen had enrolled 13–14 patients handpicked to ensure that each patient was started on the experimental drug, hydroxyurea, soon after they became infected and was responsible enough to adhere to the drug regimen. With such a small number of patients, each one was essential to the trial. That’s why Jessen was nervous as he called Lisziewicz at the end of December. One patient had gone awry: Christian.
Jessen related what Christian had told him. Over Christmas, he had decided he would no longer take the medication. Coming back to Berlin after Christmas, he laid the still-full pill bottles on Jessen’s desk, turning in his weapon against HIV. Lisziewicz was upset. “He can’t!” she cried. There was no way the virus could be eradicated from his body after only six months. Additionally, the six months had been fragmented; he’d already had to stop taking the drugs a few times, resulting in the virus rebounding throughout his body. Jessen agreed with everything Lisziewicz said, and he told her he had tried to convince Christian already, but it was no use.
Jessen was never one to pressure his patients. He believed that the most he could do was give his opinion; it was up to the patient to decide what he wanted after that. While speaking with Christian, he was surprised at his conviction. Christian was shy and mild-mannered. He had followed Jessen’s instructions closely at the beginning. To see him so sure of his decision to end therapy made Jessen consider his own position. He could ask Christian to restart therapy, even explain the danger if he didn’t, but he wouldn’t pressure him into it. Instead, he would calmly ask him to keep coming back. He explained that it was important to keep testing for the virus so they could restart therapy when the virus began coming back. Christian agreed but intuitively knew that the virus was gone. He wasn’t worried about Jessen’s warnings; after all, the drugs had already worked, at least in his mind, and he was glad to leave the clinic with only minimal chiding.
Lisziewicz respected Jessen; he was an excellent doctor. She knew Jessen would always be a doctor first and scientist second. So she expressed her disappointment and they moved on, making new plans for the rest of their patients.