The president of the ‘The Bridge’ Foundation: “Removing informed consent from the test, in the era of super therapies it is absurd to discover the disease too late”
“I carefully read” the report by the Coa (Aids Operations Center) of the Higher Institute of Health (ISS) on the new diagnoses of HIV infection and I believe that the most disconcerting data is “the numbers of AIDS, i.e. the numbers of people who do not know they have the infection and who go straight into illness. It is absurd to die of AIDS because no one has offered you a test in the era of super therapies, of U=U (undetectable = untransmittable, ‘equation’ according to which having the virus at undetectable levels is equivalent to not transmitting it, Ed)”. That’s the battle he wants to focus on now Rosaria Iardinopresident of ‘The Bridge’ Foundation and historic activist for the rights of people with HIV: “Remove written informed consent” to HIV testing “because it is now a barrier to access and work on the culture of having people tested as many people as possible”, he tells Adnkronos Salute.
The activist, who went down in history because in 1991, in the midst of the AIDS emergency, she was the protagonist of that iconic image of the kiss with the immunologist Fernando Aiuti – she is HIV positive, he is a pioneer in research and the fight against the virus – today believes this “cultural change” is necessary. In Parliament I will try to bring the issue to the attention of the Minister” of Health Orazio Schillaci, “opening a serious discussion, because the responsibility for these AIDS deaths is partly ours as well, and we are still to this informed consent, while the test must be done to everyone. We must intervene if we want to eradicate this disease, since at the moment there is no vaccine. We have the responsibility to make everyone aware of their serological condition”.
Iardino comments on the latest ISS data and in particular what shows that too many (63%) still discover the infection when it is in an advanced stage. Another significant figure: the share of people newly diagnosed with AIDS who were unaware of their HIV positivity and discovered it in the six months preceding the diagnosis increased in 2021 (83%) compared to 2020 (80.8%). More testing is key, according to Iardino. “We need to change our approach. These numbers are proven proof that we need a cultural change, that we need to adopt other tools to fight HIV infection. Probably many of those people who died of AIDS would not have died if they had become aware of their condition. For public health and the right of the individual and the community we must remove all the obstacles that prevent early diagnosis”.
Iardino underlines that it is not certain that everyone will think of having had a risky relationship. “Maybe it happened to someone, but they don’t consider it as such,” he reasons. “One evening you have a relationship with a beautiful man or woman who may not even know they have the virus, then goodbye and thank you, it ends there, forgotten”. And instead there was the contagion. “The logic needs to be changed. It is necessary to ensure that the HIV test is always in the battery of tests that doctors propose. It is also cheap, but in terms of human lives there is no scientific discussion. In the USA, for example, verbal consent to the test is valid. Let’s make HIV an important disease but ‘like other diseases’ here too”.
“After the innovation brought about by Covid, which led everyone to take the test to discover any positivity without problems, without anyone asking for anything or being surprised, we must grasp the wake. If these were the years of the swab, now let’s make it the year of the HIV test”, exhorts Iardino. The drop in diagnoses observed this year “comes a bit from afar”, from before Covid. “Today people are treated, there is less virus around, due to the U=U equation. Of course there was also less sexual activity in 2021, a factor which, together with the under-reporting of infections, distorted the data a bit” downwards but what we see is a trend that is confirmed”, analyzes Iardino. But what is interesting from the point of view of public policies is the figure of deaths from AIDS, of people who did not know they were sick. So let’s write it in large letters : no more written informed consent for HIV testing, which today is an obstacle to saving lives”.
A long time has passed since the kiss with Aiuti. And today, says Iardino, “we are on an injectable therapy every two months, which means 100% adherence. If they had told me 15 years ago I would have said: maybe. Pharmacological evolution has been so fast. Today we live as much as the general population, the therapies have refined. I was hoping for the vaccine, and I still believe in it, and I didn’t know if I would have enough years to be able to see it. I still believe in it but surely arriving in 2022 40 years after being infected with 97% effective drugs, with tolerable side effects that don’t even come close to those of the beginning of the HIV pandemic, being able to see another turning point coming soon, that of subcutaneous devices, means that in some way we have managed from the point of view pharmacological treatment of this disease. And then there are those who died of AIDS. And dying of AIDS today for not having been tested is absurd”.