Were infected in the 80s, when there was nothing to combat a deadly virus, of which little was known and that led to dozens of friends. Managed to survive and today combed gray hair
Ferran Pujol remembers every detail of that day in 1986. You can still feel the fear, the despair, the anguish… the feeling that the future stopped existing in that precise moment. He was 27 years old and life is just. And the fault had only three letters: HIV.
If someone had told then that more than three decades later he would still be alive, active, thinking of the 60 candles that soon will blow, would have laughed in his face: “At that time, the only thing that you could think of is that you were going to die, because that was what was going on. There was No hope,” he recalls.
His own doctor had made it very clear a few days before: “why do you want to get the test? What you can find out if there is anything we can do?”.
As he, Ana Martin also received a death sentence in the form of a diagnosis in 87. With yours, Ramón Flaxseed calculated not to exceed the first years 90. And Sea Linares, very addicted to drugs, he could only think of one thing when, in 1989, gave him three months of life: “I Hope I die before you”. Because the aids, this disease that they barely knew anything, it was relentless, and did not stop to take to friends and acquaintances.
Against all odds, they all survived to “that indentation”, resisted both the lack of treatments and therapies highly toxic who came after them, fought against the stigma, and, after many years, have been planted in that future that you thought never could exist.
they Thought they would not be 30 and is coming to 60. And they are the first generation that reaches the mass of the retirement age, after sharing a lifetime with the aids virus.
In the query, it is possible to notice the change: almost half of the approximately 145.000 patients with HIV that exist today in Spain already have more than 50 years, according to epidemiological data. In 2030, will be 73%. But they faced a new challenge: the accelerated aging of the virus and the years of therapies toxic cause in your body.
The drugs I caused neuropathies so strong that I had to use crutches, I suffered cramps… My quality of life was affected very much, but I went ahead
Because if something is shared by the majority of these superVIHvientes, as they call themselves, is to have lived an authentic via crucis drug, a jump constant over years of treatment in treatment, with the hope of finding an effective alternative. “I participated in all protocols of research, I tried all the drugs that are testaban and I got to develop resistance to all available drugs,” recalls Ramón Flaxseed.
“it Was the only nail that she had to grab me. I knew that the only site where I could get something positive were the clinical studies, so I tried everything that came out”, stresses Ana Martin, which has dozens of the amount of tablets that passed through their hands.
From the other side of the query, Santiago Moreno, today chief of the Infectious Diseases service of the Hospital Ramon and Cajal of Madrid, lived with intensity those years in which all were uncertainties: “The first cases were detected in Spain at the end of the 81, and I started in 84. At the beginning we did not know practically nothing, or even that the causative agent was a retrovirus. Many patients were already terminal. Until the mid 90’s, came the highly active antiretroviral therapy (HAART), there was nothing really effective. But some patients who had been infected in the 80’s and that the infection progressed more slowly were able to arrive at that date, clawing months of life with some drugs that were tested, such as AZT. Those years were extremely hard for the patients. Not only for the effect of the medication, but by the rejection,” says Moreno. “Try that you operate on a patient with aids, was virtually impossible”.
The arrival of the combined therapies was a true “before and after” – “in the end, slowed down the extremely high mortality”-, continues the specialist, but some of the drugs they charged a high price for their effectiveness. So remember, Ferran Pujol: “I caused peripheral neuropathies so strong that I had to walk with crutches, lost weight excessively, suffering cramps nefríticos. My quality of life was affected a lot, but I kept going.”
“those years Were very complicated,” agrees Ana Martin. “In addition, the method of administration was crazy. At one time I had to take 12 drugs each day, some could not be mixed with certain foods, other only you could take them in the morning, one tablet was impossible to swallow, seemed to cement… And that with a few nasty side-effects”, such as lipodystrophy, leading to alterations in fat distribution and marked publicly to those affected. “I’ve always been upfront. And the truth is that not only not missed to those who were, but they were many more than expected”, says Ana Martin, who is retired after years of working as administrative.
Every day I would wake up and say: I am alive one more day. I saw so many people die alone, afraid,
The first effective medications saved the lives of those patients, but also changed his way of coming to the third age. What have revealed several studies, which clearly show that the people who have lived many years with HIV and have been subjected to the side effects of those drugs exhibit signs of aging about 10 or 15 years earlier than the general population.
“We are seeing a significant increase in cases of osteoporosis, cardiovascular disease, kidney problems or cognitive disorders,” explains Eugenia Negredo, the head of the line of Aging and Complications associated to HIV, Fight against aids Foundation and specialist of the Hospital Germans Trias i Pujol of Barcelona. The group who runs it is doing a follow-up to a cohort of 200 older people with HIV to assess both the differences with the ageing of the hiv-negative people as the approach that should be used in this particular case.
“we Tried to see what special needs presented by its aging, also taking into account things that are not asked in the query usual, they are undetected, as are aspects related to the mobility, the social sphere, quality of life or their state thrillsl”, adds Negredo.
Between antiretroviral therapy and other problems associated with this to premature aging, patients are taking so many drugs, “a real problem that is going to be even greater in the next decade,” said Ramon Morillo, the Spanish Society of Hospital Pharmacy. Next to the study Group GeSIDA, has co-ordinated a guide to optimize and control the extent possible the polypharmacy that are subjected to these patients.
“In general, it is necessary an approach that is more comprehensive for people with HIV who are aging,” says Miguel Vazquez, of the Working Group on Treatment of HIV-twg, which has produced a study on the living situation of the older of the collective.
Not only for the health dimension, particularly, that you must take into account in his case, he notes, but “for the complex reality of psychosocial and socio-economic faced by these patients.” And puts examples: many of these people agreed to pension for invalidity of a very low amount, given the fact that your life expectancy would be very short. But, for this reason, today live in a precarious financial situation, which in some cases is exacerbated by a higher level of insulation. Many also suffer from a pictures of anxiety and stress arising from the psychological scars that he has caused -and still causes some – to live with the virus.
I Participated in all protocols of research and I came to develop resistance to all drugs,
“The stigma continues to exist,” says S. J. J., who does not want to give your name or appear in photos of the story for fear of rejection and losing his job. “There remains a lot of discrimination and a lot of ignorance. Most don’t even know that when you’re in treatment and your viral load is undetectable can’t transmit the virus”.
“Me either, I’ve seen that change from which some speak”, corroborates Sea Linares, who is still watching the dentist program appointments at the last minute, “although that does not respond to any logic.”
behind them has known of any in the 30 years that he has been living with HIV. He was 27 years old when he was diagnosed with the infection and his first reaction was to want to die. But he did not. Is more, you do not know very well how to, but came to the mid-90’s without taking any medication.
effective therapy came to the time that he left completely the consumption of substances to return a life in which, however, was always death. “I landed in a partnership that was called Acting. And if one week there were 20, then the following week because it was just 18. So, every day, I woke up and said, I am alive for one more day. I saw so many people die alone, with fear. We embraced it because it was the only thing that we could do.” And so they were, until well into the turn of the century.
Today, Sea Linares, signer of the manifesto SuperVIHvientes, denounces “invisibility” that suffers from that first generation who contracted HIV in our country. “It seems that with HIV now everything is fixed, which that gives no problems, but the reality is that the system is not designed to care for us as patients as they get older,” he says. And slide a new fear: “sometimes I feel we are like at the beginning, when we didn’t know what was going to happen with us. What quality of life we will face what comes?”.
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