Heiko Jessen. The epidemic's contemporary

Doctor Heiko Jessen is one of the most famous HIV specialists in the world. He is the very doctor of the famous 'Berlin Patients' and he is probably the most well-known doctor working with the LGBT community in Berlin.

Heiko's clinic is situated in the green district at the centre of the German capital. This is where the main gay quarter of Europe can be found, extending from Nollendorfplatz to Viktoria-Luise-Platz. In the same building as the clinic is the gay cinema&cruise club, right opposite is a shop called Leather and Rubber. In the area there are rainbow flags and almost puritan-looking cafes.

It is here, including this street, that 30 years ago the most terrible epidemic of the late 20th century unfolded. Heiko's medical career is a contemporary of that epidemic. The centre's address has not changed in its entire history. Motzstraße, 19.

AIDS.CENTER spoke to the legendary doctor about the despair of the 80s, the hopes of the 90s, personal losses, miracle recoveries and humanity's chances of overcoming the disease once and for all.

— How did you decide to study HIV in the first place?

I initially studied at Kiel University in the north of Germany for two years — a general course, then I studied in Hamburg, then  at UCSF, San Francisco for a year It was the mid-80s, the height of the epidemic.

At that time we knew very little about the virus. We knew nothing about Africa. At first, in the West, they talked about pneumocystis pneumonia, about the 'mysterious plague of the gays', then the term AIDS appeared. In 1983, Gallo and Montagnier discovered the human immunodeficiency virus that causes this disease.

Many old specialists were afraid of the virus, they didn't know what to do with it. And in the end I decided that courageous people were needed in this field. In 1985. At that time the General Hospital, San Franscisco,  it was the biggest HIV centre in the world.

I now find it very painful and difficult to remember these days. There were practically no effective methods for treating the disease. We were powerless. Every morning, about one quarter of the young patients we, the students, were looking after would die. Every morning. Every fourth. And it was horrible to come face to face with death.

Long after returning to Germany, I was not sure if I actually wanted to be involved in something like that. Many people who lived through that time do not like to talk about the past. For them, it is traumatic

— You moved to Berlin.

Yes. This was a distinct era in the life of the city: the fall of the Berlin Wall, East and West reunited together. Loads of parties. It was a great time. We were very optimistic, we thought the world was going to change.

— But somehow you had to return to HIV...

Yes, my boyfriend Andrew contracted the disease. From another person, not from me. I remember we were staying in the States. There was a huge demonstration in Washington for gay rights. A lot of people, Hillary Clinton drove past the crowd in a black limousine, waving from the window like a queen. As a sign of our support. Andrew felt fatigued, something like a cold. And when we were back home, we did a the just developed PCR test and it came out positive.

I tried to help him meet with the support of all the HIV professionals I knew back then. But there was nothing that could heal him. The first medicine only appeared in 1996. And he went back to America.

— Why?

On one hand, the feeling of guilt... On the other, he left me in Berlin that should live my life.

— But this is how you returned to the profession?

Yes. This is the exact reason why I became involved in HIV again. And I am glad to be back. The despair of the 80s was replaced by the hope of the 90s. People stopped dying. In any case they stopped dying in developed countries.

Historically, HIV therapy has gone through three phases: I, as a veteran of HIV medicine, have passed through all of them.

At first, in the 80s, it involved only palliative care. We were not thinking about saving a life, but about preventing people from suffering. Our task was to manage the disease and take away the pain.

The second stage was when the first drugs appeared – effective drugs, but very aggressive: our attention was focused on the short- and long-term side effects of therapy.

People survived, but they suffered from dystrophy, neurological disorders, experienced terrible pain. It was about controlling the side effects of antiretroviral therapy.

And at that time there was always the question of when to start treatment. The drugs are toxic, they themselves harm the patient's organism. I was a supporter of starting early, but there were constant debates around this.

And now the third phase, the modern phase, where we have new drugs that are not so aggressive, and we are faced with new challenges: with resistance, with our patients' aging, their reintegration into normal life. It has become important to fight with depression, with stigma.

— It is well-known that from the very beginning you were working primarily with vulnerable groups.

I opened an medical office for gays. Back then my idea was to not separate the HIV-positive and HIV-negative patients. It was quite a novel idea at that time.

— By the way, in modern Europe, are gays still an 'at-risk group'?

Definitely yes.

— In Russia, for example, 54.4% of HIV-positive people are heterosexuals who contracted HIV through sex, 42.8% by sharing a needle, while only 2.1% are gay.

I do not believe in this number. It means only one thing: people are not telling the doctor the truth, they are afraid to admit that they're gay.

— I heard that in 1994, when you were just taking out a loan to open the centre, the papers read: 'it will be an office for men who have sex with men'. How did the clerk who received the documents react?

I expected it to be difficult, of course – it was 1993 – but everything turned out well. It even seemed to me that he was gay himself, though I'm not sure. Two banks had already denied me before that, but due to the lack of financial support. Even now it would be difficult to do this without money.

— And you opened your office at the address where you were living: Motzstraße, 19.

Yes. I allocated a part of my flat to be the office. At first, there were small rooms, then larger. Now my clinic occupies two floors with 750 sqmeters

When you are just starting a business, it's very convenient. You don't have to go far to work. And Motzstraße is the centre for LGBT culture in Berlin. All my clients are nearby. But two years after opening, people found out that I not only worked, but also lived there. They began ringing the doorbell at night, 24 hours a day, so I had to move out.

— Have you moved far?

Not far. To the next block, but people left me alone.

— Not long ago I was talking to a guy from a Russian province, from the Caucasus. He has HIV, in fact, AIDS already. But he doesn't take drugs on principle, though he has the option, because he blames himself... He believes that AIDS is punishment for being gay. 'It is bad to be gay'. And if he is bad, then he must die. What can you do with this?

It is a difficult question. He needs professional help. Psychological help. What he is doing is a form of suicide. Autoaggression. We have people like this in Germany too...

— Do you personally have many patients like him?

Internalized homophobia exists everywhere, all over the world. Most of us grew up in a non gay society.

But it is more common for people to refuse medical treatment for other reasons: HIV dissidents who are afraid to accept their diagnosis. 'If AIDS does not exist, then I do not have AIDS'. Or those who don't want to harm their bodies with 'toxic drugs', while they themselves are constantly hanging out at parties on drugs... It takes different forms.

— You are famous all over the world as the doctor who led the case of the 'Berlin Patient', the only person to be cured of AIDS.

Yes. But there is a little confusion. There were two 'Berlin Patients'. I treated the first, I had very little to do with the second.

— Tell us about the first.

The first came to me with an 'acute infection', the very 'fever' that appears two weeks after the virus first enters the body. As soon as its symptoms disappear, there is a latent period with no symptoms. I immediately figured out what was wrong and started the treatment very early.

In addition to HAART drugs, I included a very old medical drug, which had been used by oncologists for cancer chemotherapy since the 1960s, in the scheme, because a US collegue of mine had conducted lab experiments on deactivating CD4 cells using it. It was a very new idea.

At that time in Germany we could prescribe drugs for incurable diseases that were not officially approved that indication, here against HIV. Now everything has changed. But back then you could do whatever you wanted, if you could explain why.

It seemed that the scheme was working, but the guy had an acute hepatitis and he interrupted the treatment for a while. Then he resumed, but interrupted again after 3 months for a genital infection. It was his decision. But tests showed that even without drugs, his body somehow learned to control the virus.

The company BMS initiated a controlled study, but the combination of their antiviral drugs they wanted to be combined with this anti-cancer drug I used was too toxic. If I was administering it to patients in very small doses, they were starting with large doses right away, and I. left the study. Because I understood that it would not end well. In the end, something I was so afraid of happened. People started dying, the experiment was stopped. We still do not know how the guy managed to 'be cured'. Twenty years have passed since then, and we still have no explanation.

— Was the second patient 10 years after the first?

Yes, his name is Timothy Brown, he is American. He was diagnosed with HIV, but aside from HIV he also had leukaemia. This is a famous story. The leukaemia developed very quickly, so a young oncologist decided to perform a hematopoietic stem cell transplantation from a donor who was immune against HIV by nature. 0.5% percent of Europeans are. The transplantation is preceded by a harsh course of chemotherapy and radiation to destroy the old immune system. After the operation, the doctors took tests and no virus was found in Timothy Brown’s body anymore.

But all attempts to repeat this experiment were unsuccessful. As a result, the first Berlin patient received a functional cure, he was able to control the virus without drugs, the second one was actually a 'sterilizing cure', but in both cases we don’t know why exactly it worked.

— So it turns out that science was not improved at all, neither of these cases contributed anything to science?

They did. They influenced 20 years of follow-up research. We got a lot of information. Later, scientists tried to train the immune system so that it would learn to fight the virus on its own, alternating HAART with breaks in treatment. However, now we understand that this was a idea that led in to a blind alley. But nevertheless insights were important.

— By the way, that first patient, is he still alive?

Yes, he is alive. We see each other regularly. He is over forty.

— Unlike the American, he still hides his name...

Over the course of his entire life, he has only given two interviews: to the New York Times and a major German newspaper, Süddeutsche Zeitung. Both anonymously.

— Why? After all, he could have become an international celebrity!

Stigma. He is from a very conservative family... Maybe he's afraid of his colleagues.

— And what is his profession, could you tell me anything else about him at all?

He works as a librarian. There was a partly funny, partly sad story about this... He has a partner, a boyfriend. They have been together for quite a long time. And when I saw them together after a couple of years, it turned out that he hasn't even told him anything And the guy has heard of the 'Berlin Patient', read about him in the newspapers, but does not even suspect that he lives under the same roof as this very 'patient'.

— He hides it even from a boyfriend?

Yes. He hides it, but did not hide his HIV infection. And this is his decision.

— Your lecture at the conference which you came to Moscow for was dedicated to PrEP, i.e. preexposure profilaxis of HIV. You know, in Russia there is such prejudice that PrEP is for...

Yes, that was one of the question I was asked after the lecture here. 'Truvada Whore'. It seems like PrEP is only for whores.

Yes, there is such stigma in America, especially among the African American population, but not so much in Germany

— There is another reason why PrEP is criticized. Since many people 'prescribe' it to themselves, without even being tested first, there is a chance that we will end up with an epidemic of a resistant form of the virus.

In Germany, there is now an official program for preexposure prophylaxis. Truvada is prescribed only after the patient has been tested; moreover, everyone who has signed up is checked regularly, several times a year, for other sexually transmitted infections and kidney function.

Resistance really can develop if a person starts taking Pr when already infected with a virus. The amount of  drugs taken as a preventive measure is not enough to suppress the virus in a possible infection, giving it the opportunity to 'overcome the drug by mutation and become resistant.

This is not good. But still, it doesn't lead to the spread of a resistant form of the virus. You would need a multiresistant virus.

Statistically, this is very, very unlikely. In the medical literature, there is a description of four such cases, but this is across several hundred thousand PrEP-users! In addition, these referred publications are not completely reliable, since their data are based on the patients' own anecdotes. And you never know how true they are.

— At Humboldt University in Berlin, you teach a special course for medical students: 'How to inform patients about a bad diagnosis'.

I call it 'Breaking bad news'.

— Aren't you tired of giving bad news to patients?

No. In this whole medical routine, when you communicate with a patient, it makes sense. You create trust, future relationships. Yes, you bring bad news, but in the end, people will be grateful to you.

In this whole medical routine, when you communicate with a patient, it makes sense. You create trust, future relationships.

— By the way, we spoke with you about Andrew, your former partner. What happened to him after he left you? Did he survive in the end?

Yes. He is alive. I have not seen him for 20 years, I did not know anything about him, but at some point, he turned up again. We ocassionally see each other. But he definitely would not want to be written about in newspapers.

— In one of your interviews, you said that your career as a doctor began with the epidemic, and you would like it to end with the epidemic. When are you going to retire?

In terms of treating HIV, I think we will see big changes in the next ten to fifteen years. Antibody therapy, gene therapy, therapeutic and preventative vaccinations. There was a study with 16.000 participants in Thailand, where the vaccine worked in 30% of cases. It is not enough, but it's already very good. I am an optimist. With improved vacines and adjuvant we will get he. Studies are under way.

... However, if you are personally interested in my plans (laughs), then I am not planning to retire yet...

I remember the HIV conference in 1993 in Berlin. What despair and darkness reigned then. It was a time of disappointment. But three years later, in 1996 in Vancouver, after the first so called protease inhibitors for a triple combination were approved, I remember how optimistic we were. We were thinking such a treatment would cure people after a couple of years by making the virus disappear. That, of course, did not happen then. But I believe that someday it will happen.