"The revolution in anti-HIV therapies contrasts with negative attitudes about people with the infection"
“I am very aware that if this had happened to me not so many years ago I would be dead today”. Miguel looks back at the reality of HIV in the 80s and 90s – “the day before yesterday actually” – and lets out a sigh.
He, who came to see the harshest side of the infection in his own body, feels lucky for the place in the world and the time in which he has lived; a space in which having the human immunodeficiency virus (HIV) has long ceased to be a death sentence.
Today, this 52-year-old Sevillian doesn't even feel sick. The only thing that reminds him of the virus is the pill he takes “without fail, every night” before going to sleep.
But he knows well what HIV is capable of. The damage that could be caused if antiretroviral therapy did not keep him on the ropes.
“I was diagnosed in 2013, when I was already very bad,” he recalls.. “In just over six months, I started to lose a lot of weight and some spots appeared on my body.. I was very weak. I looked in the mirror and what I saw was the same image I had seen in the movies.. Like the protagonist of 'Philadelpia'. I had a suspicion deep inside that I might have it, but at first I didn't want to admit it.. Until I started having a lot of difficulty breathing, I was choking and they had to admit me.. He had a very serious pneumonia and everything came out from there. “It was a blow.”
The analyses, which revealed that Miguel's defenses were “practically at zero”, also showed that it was most likely that this businessman had been living with the virus for approximately 10 years without knowing it.. “I was a late diagnosis. The infection appeared in 2013, in just a few months, but doctors estimated that he may have contracted it in 2003.. Fortunately I have had few relationships and I have always been very cautious, so I am calm because I know that in that time I have not transmitted it to anyone,” he says.
According to the latest report on the HIV situation in Europe, published just a few days ago jointly by the European Center for Disease Control (ECDC) and the European Office of the World Health Organization (WHO), almost half of The cases reported on the continent in 2022 were diagnosed late, which “represents a challenge” for the current fight against the epidemic, as Andrea Ammon, director of the ECDC, noted during the presentation of the document.
With the diagnosis, in 2013, came the medication and the improvement of all the health problems that Miguel suffered.. “I was admitted for a month for pneumonia at the Valme Hospital. They had to give me oxygen although luckily I did not need to be admitted to the ICU.. And immediately everything started to get better.”
At first, he was very scared, he admits. “Not only because of how bad I looked, because of how serious I became. Also for accepting the infection and what it could mean. Dr.'s words reassured me a lot.. Lozano, an entire institution in Seville and a person with a lot of humanity. He told me that I wasn't going to die from this.. that was going to move forward. And that gave me a lot of hope.”
“They even offered me psychological support, but I didn't need it.”. “I am a very believing person and that helped me, but I appreciate the offer, because I understand that it can be very important for other people,” he points out.
Currently, in addition to the medical check-ups he undergoes every six months, Miguel goes to the hospital pharmacy service at the Valme Hospital (Seville) every three months, which supplies him with the necessary medication and monitors his progress.
“They don't just give me the pills. They are interested in whether I have been sick, if I have had to take other medication and they always remind me that I can call them with any questions, so I don't hesitate to ask them.”
CMO Strategy
As in other Spanish centers, the Hospital Pharmacy service at Hospital de Valme follows the CMO strategy in the care of its patients with HIV.. Explains the details of the model Ramón Morillo, responsible for the service and member of the Spanish Society of Hospital Pharmacy (SEFH).
“Some time ago at the SEFH we did an analysis of the criteria to which we had to respond if we wanted HIV hospital pharmacy care to have added value.”. We saw that we had to respond to three things that patients demanded: care based on the needs of each patient, which went beyond merely pharmacotherapeutic needs; an integrated approach within multidisciplinary teams; and longitudinal follow-up, the possibility of permanent contact that was not limited solely to professional action at the time the patient came to the hospital.”. This became the CMO (Capacity, Motivation, Opportunity) care model that allows patients to be stratified based on their complexity and individualize their care; work comprehensively, focusing on patient motivation and establishing sustained contact with the patient, incorporating new technologies or telepharmacy in the approach.
“Different studies have evaluated the model and have confirmed that it offers better results, for example improving adherence to treatment. The SEFH has just published a guide with the methodology and experience of this way of working, which is already beginning to be replicated in other types of pathologies, such as oncohematological patients or immune-mediated diseases, among others,” explains Morillo.
Miguel has nothing but good words for the professionals who follow his case. “I feel very well treated and the monitoring they do gives me great peace of mind,” he emphasizes, remembering that his virus levels have remained undetectable for a long time.
“I know that to get to that it is essential that I not forget a single day of the treatment. For me it is a routine, always at night and I never neglect it. The first pills I took made me have very vivid dreams, I didn't know what movie I was going to find myself dreaming about every night.. Then, the other pills I have taken have not had any type of side effect. But I have always taken them, because I know that it is essential,” he points out.. Now, the Sevillian aspires to be a candidate to receive injectable therapy that allows him to forget about medication for two months.
“It is tremendous what progress has been made in these decades in HIV therapies. A true revolution,” he celebrates.
Unfortunately, what has barely changed in these years is the stigma, denounces Miguel, who does not want his last name to appear in this report or to be recognized in a photo for fear of the “rejection that continues to exist.”
“There is still a great lack of knowledge about HIV. In general, people do not know that if you have the undetectable virus in your body, you cannot transmit it.. That message has not penetrated,” he laments.
Furthermore, “there continue to be negative attitudes and assumptions about people with HIV. That's why many of us remain silent and have only told our closest circle,” he reflects.
“The other day an acquaintance told me about a case of a person with HIV that he had learned about. He told me alarmed, with fear. And I could only tell him not to worry, that nowadays if you are on medication you cannot transmit it.. But I didn't tell him that at that moment I was talking to another positive person.”
We need to move forward in that direction, claims Miguel. “We need more campaigns, a series, films that show the reality of HIV, that show that you can lead a normal life, that overthrow prejudices, that end misinformation. In bars, in restaurants, at the fair, at work…. People with HIV are everywhere. And we would like to not have to be silent.”