The Lisbon Patient: Meet the man living with HIV who's about to turn 100
Published Monday, December 17, 2018 10:00PM EST
Miguel walks with poise, sometimes leaning on a cane as he steadily moves down the hallway of a busy urban hospital outside Lisbon, Portugal. But other than the walking aid and some vision and hearing loss -- nothing surprising for a man who will be 100 this spring -- on the surface, he is the picture of perfect geriatric health. Miguel, however, has spent at least a quarter of a century living with HIV.
Referred to in a soon-to-be published case study as “The Lisbon Patient,” Miguel -- which is not his real name -- is also the oldest documented person with HIV in the world.
“I feel happy,” the soft-spoken senior told CTV News, speaking through a translator at the Portuguese hospital. “I've spent these years without hardship and without troubles.”
With sparkling grey-blue eyes set against a kind, clean-shaven face, Miguel comes across as a polite, proper gentleman in his brown blazer and cardigan. The Lisbon Patient, however, does not see himself as a “special case” -- but others certainly do.
“Of course 100 years is something special!” HIV specialist Dr. Giovanni Guaraldi told CTV News from his office in Modena, Italy. “This guy (is) like an icon of hope for people living with HIV.”
When Guaraldi first heard of The Lisbon Patient through one of Miguel’s Portuguese doctors, who had been training at Guaraldi’s innovative geriatric HIV clinic in Modena, he knew that he had to share his story with the world.
“We need to make people know,” Guaraldi said. “There (are) still a lot of people living with HIV that consider their disease something dreadful while actually… regardless (of) experiencing and living with a chronic disease, you still can experience healthy ageing.”
THE LISBON PATIENT
In 2004, when Miguel first arrived at the hospital near Lisbon, he was suffering from rare forms of lymphoma and colitis as well as a dangerously low CD4 count, which are white blood cells that play a significant role in our immune systems. Miguel’s medical team would soon learn that these were all the result of AIDS: the deadly final stage of an HIV infection.
“If he did not begin the treatment… other infections, other malignancies, other complications (could have appeared),” Dr. Henrique Santos, Miguel’s primary physician, told CTV News.
Miguel underwent several brutal rounds of chemotherapy. Once he had stabilized, doctors then attacked his HIV infection with an aggressive and toxic combination of eight antiretroviral drugs. At first, even Santos had misgivings.
“When this patient came to me at this age, I had some doubts that he should be treated,” Santos recalled. “Everything went well, but it could have gone wrong. There could have been signs of toxicity. He could have not been able to bear the treatment. He could have missed the treatment. We had to consider those scenarios.”
It is unknown exactly when and how Miguel contracted HIV -- he has been loath to speak about it -- but his medical team estimates that he was living with the virus for about a decade before being diagnosed at age 84. Unprotected heterosexual contact, they believe, was the most likely culprit.
After being on the brink of death 15 years ago, today Miguel has a strong CD4 cell count and an undetectable viral load, meaning that he has almost no virus in his blood and cannot transmit HIV. In other words, The Lisbon Patient is as healthy as a 99-year-old could be. Almost completely independent, he even lives alone and receives only minimal assistance in his day-to-day life from a family member who resides in the same apartment building.
“I still feel well enough that I don’t bother other people that much,” Miguel said. “I feel fit enough, too, to take care of all my routines, to get dressed, to put my shoes on, to go to bed. I do all of that at home alone.”
A key to the success of Miguel’s treatment, his medical team says, is that he religiously takes his antiretroviral medication.
Dr. Inês Pintassilgo is a medical resident who works alongside Santos and has been part of Miguel’s treatment team for the past three years. She is also the doctor that brought Miguel to the attention of Guaraldi in Italy.
“I was like, ‘Oh my God -- I never met someone with HIV that's old!’” Pintassilgo said of first meeting Miguel.
“The only reason he got here is because the medication is doing its job right -- the medication is keeping the virus under control… If he wouldn’t take his medication, of course he would be ill and he wouldn't be like this.”
His healthy lifestyle and genetics likely round out that picture, Pintassilgo added.
“It was one of the things that took me to the conclusion that HIV itself, it's not enough to tell you how you are going to live or if you're going to be a survivor or not -- it takes all of the other things,” she explained. “He had a very active life, he worked until late and he never drank, he never smoked… His parents also lived until near 100. So I think the message here for me was that if HIV is controlled, all the other factors are the important ones.”
Pintassilgo describes Miguel as a “survivor” in “very good” health. Today, his treatment regimen simply consists of two nightly antiretroviral pills, but Miguel attributes his amazing longevity -- far exceeding the life expectancy for healthy adults in any developed country -- to something much simpler.
“The reason why I have reached such a long age is because every day when I go to bed I make a cup of lemon tea,” he explained. “The good slice of lemon with the rind and the pulp and everything. It would boil for five minutes and in the end I would add a good teaspoon of honey.”
Despite being a potential symbol of hope for the estimated 36.9 million people who are living with HIV-AIDS worldwide, Miguel’s family, however, asked CTV News not to show his face or use his real name in this story.
“Not so big as 10 years or 20 years ago, but there is still stigma,” Santos said. “Because the way people can get an infection by sex, by drugs, the stigma still exists.”
Still, both Santos and Pintassilgo believe it is important to share Miguel’s story, which they will be further elucidating in a soon-to-be published case study they are co-authoring with Guaraldi in Italy as well as other colleagues.
“He may appear as a symbol that everyone who has the infection must believe that nowadays that doesn’t mean death,” Santos said. “If people take the medication, they can live as other people and so well as other people and that’s the main conclusion, I think.”
“I think that’s what he teaches us, that you can live with HIV as long as you have all the other background and living lifestyle and comorbidities under control,” Pintassilgo added. “I would say, of course, HIV maybe plays a little role in this, but if it's well-managed and well-controlled it will not be that big issue.”
FROM ‘DEATH SENTENCE’ TO ‘NORMAL LIFE’
Recent advancements in HIV treatment are what make The Lisbon Patient’s story possible.
Dr. Anthony Fauci is an American immunologist who has been involved in HIV-AIDS research and treatment through the U.S. National Institutes of Health (NIH) since 1981, the dawn of the HIV-AIDS epidemic, when stories first emerged about a mysterious, deadly and then-unnamed disease that was ravaging the immune systems of young, gay men in America.
“When I was taking care of patients… in the beginning of the epidemic, a person would come in with advance disease and the median survival would be about a year,” Fauci told CTV News from Washington, D.C., where he still works. “I had a prescient feeling that this was going to explode. Unfortunately, I was correct.”
- For more on the history of HIV-AIDS, see this timeline here.
“You could be out dancing on Saturday night and by Sunday morning feel like you’d partied too much and then by Monday felt like you had a bad cold, by Wednesday having trouble breathing, find yourself in the hospital by Friday and you could be dead before the end of the weekend -- it could move that quickly,” Tim McCaskell, a Toronto-based activist who co-founded the group AIDS ACTION NOW! in the 1980s, told CTV News. “It’s like being a soldier in a war and having your buddies cut down on either side of you and wondering when the bullet’s going to hit you.”
But today, Fauci says, thanks to “breathtaking advances in the science of HIV,” people with new HIV infections can reasonably expect to live an additional 50 years after being diagnosed.
“They can have almost a normal life expectancy,” he said.
The most significant breakthrough came in 1996 with the introduction of combination antiretroviral therapy: a treatment that uses two or more drugs to suppress viral replication, essentially keeping the HIV virus at bay and stopping it from ravaging a person’s immune system.
“(When) you drop the virus to a below-detectable level, you make it essentially impossible for that person to transmit the virus to anybody else,” Fauci added.
In the years since, such drugs have become less toxic, more effective and in most cases, can simply be taken in just one or two daily pills.
- Fauci believes that we “could essentially end the (HIV-AIDS) epidemic tomorrow.” There are, however, some significant obstacles. To learn more about what still needs to be done to eradicate HIV-AIDS, see this story.
“It’s not eradication of the disease, but it’s taking a death sentence and transforming it into a chronic, manageable condition,” explains Dr. Neil Rau, an Ontario-based infectious disease specialist who oversees the care of some 200 people with HIV. “Now, I’m telling a lot of my patients… ‘You’re going to die with this disease, but not from it.’”
McCaskell the activist is now 67 and has been living with HIV for nearly four decades. The advent of combination therapy, he says, “signified for many of us that the crisis was over.”
“People stopped dying, they just literally stopped dying,” McCaskell explained. “After 15 years of this decimation of our community… suddenly there was a possibility of living a normal life again.”
TOWARDS A GERIATRIC HIV POPULATION
Due to rapid advancements in antiretroviral therapy, the case of the nearly 100-year-old Lisbon Patient, Fauci says, “is unusual, but not surprising.”
Experts, moreover, anticipate that if there are not others like Miguel already out there, there will be many more in the years to come. Miguel, they say, is the face of an emerging trend: the geriatric HIV patient.
“The average age of people living with HIV in Canada now is more than 50,” Dr. Sharon Walmsley, an HIV specialist and senior scientist at the Toronto General Hospital Research Institute, told CTV News.
Those numbers are similar across the developed world, and thanks to combination antiretroviral therapy, that average age is expected to continue rising in the years to come.
“There hasn’t been a cohort of patients who have aged with HIV,” Walmsley added. “And the big question is, is aging (for them) different than that of the general population?”
That’s why Fauci and his team of NIH researchers in the U.S. are studying comorbidities: the presence of one or more additional conditions that occur simultaneously with a primary disorder, which in this case is HIV.
“Because we are making them live longer with our drugs, they then wind up developing other diseases that we never would have realized that they were going to get years ago because they never lived long enough,” Fauci explained. “They have a higher rate of cardiovascular disease, a higher rate of liver disease, a higher rate of kidney disease. They have aging characteristics in their tissue that make their body physiologically look like it’s aging sooner than their stated years. So we’re doing a lot of studies to try and find out what are the special issues associated with people who’ve been infected for 30 and 40 years.”
In a similar vein, Walmsley is also currently putting together a study group of 750 Canadians over the age of 65 who are living with HIV to see how they age and help provide the growing geriatric HIV-positive population with better healthcare. She is also setting up a clinic for such people in Toronto.
“We have geriatricians on our team because we haven’t had to face geriatric HIV before,” she explained. “The other issue that we’ve never had to face is that as patients age with HIV, they’re also going to be looking at the need for long-term care and our long-term care facilities are not equipped to deal with HIV.”
It’s also largely unknown, Walmsey added, how HIV medications interact with other drugs.
Dr. Sean Rourke is neuropsychologist at Toronto's St. Michael's Hospital who specializes in the neurobehavioral complications of HIV. People with HIV, he says, experience “accelerated aging” of the brain.
“It’s a tsunami waiting to happen,” he said of the aging HIV demographic and our unprepared health-care system. “The HIV sector (was) built when people (were) dying. It needs to be redesigned to help people live and thrive.”
Yet another project like this is already underway in Modena, Italy. Called the Modena HIV Metabolic Clinic, this one-stop shop for geriatric HIV patients is being run by Guaraldi, the Italian HIV specialist, and staffed by other experts like nephrologists, dieticians and geriatricians.
“I believe that the message is not to give more years to life, but to give more life to years -- this is what we want for the future for our patients ,” said Guaraldi, who also works as an associate professor of infectious disease at the University of Modena. “I believe that the Lisbon patient is a sign of hope for people living with HIV to say you still have the capacity not just to live longer but to live in health, to experience healthy aging… He is a proof of principle for us researchers and doctors to say we can provide better care to people.”
Given The Lisbon Patient’s good condition at an age when others experience a weakened immune system, Guaraldi believes that he may hold clues on how to age healthily with the HIV virus. That is why he is now analyzing Miguel’s blood and comparing it with that of other centenarians.
“I believe that The Lisbon Patient will inform us a lot about how HIV people are aging from an immunological standpoint,” Guaraldi said. “This patient is the tip of an iceberg.”