Back in Italy after a decade abroad where I was diagnosed with LAC, I was denied blood thinners by Italian healthcare, and as a result I now suffer in my thirties of life-long incurable chronic pain. But I am happy.
At the beginning of 2023, I moved back to Italy, after a decade where I lived in several other Countries. When I was abroad, I had a blood clot, luckily without long-term consequences. After this event, I was diagnosed with a serious generic condition (antiphospholipid syndrom, or lupus anticoagulant, a.k.a. APS or LAC) that puts me at risk of unpleasant events such as blood clots (thrombosis), embolism, and ischaemia. I was told that to prevent the occurrence of such events I would have to take blood thinners (anticoagulants) for the rest of my life. I have been prescribed such drugs in all the Countries I lived since then.
Back in Italy, I go to my GP and I bring the results of the (5) positive LAC tests that I took abroad. The GP prescribes me to continue the treatment with blood thinners. When I am about to run of doses, I go to the pharmacy to get new ones. At the pharmacy they tell me the prescription has expired. I then go back to the GP, and she gives me a new prescription. I then go back to the pharmacy. They tell me that they cannot give me the blood thinners without a "treatment plan". I then ask them who should make this treatment plan. They tell me to ask the GP. I thus go back to the GP bringing the (5) positive LAC test results. She is on leave, so I speak with her substitute. She tells me that the treatment plan must be made by a specialist from a public hospital. I ask her which specialist I should see, she asks me which one I would like to see, and I tell her I was hoping she would tell me. At the end she prescribes me urgent visits with a rheumatologist, an angiologist, and a cardiologist.
I book these visits through the Public Healthcare Central Booking System, and they are assigned to me at the Sant'Orsola Hospital, the Maggiore Hospital, and in a Medical Clinic in San Lazzaro, respectively. I thus bring to the Sant'Orsola rheumatologist the (5) positive LAC test results, and she tells me that it's not her who produces the treatment plan, but the angiologists. I thus bring to the angiologist Alberto Martignani (at the time) at the Maggiore Hospital the (5) positive LAC test results, and he tells me that it's not him who produces the treatment plan, but the Center for Coagulation Diseases. I thus think: I am lucky to leave in a country where the procedures are clear, bureaucracy is streamlined.
He tells me that he will refer me to the Center for Coagulation Diseases should it be confirmed that I need to continue the treatment with blood thinners. I thus hand him the (5) positive LAC test results. He glances and the first line of the first page of the first test, and says---OK let's do the test again, let's do an echodoppler, and let's also do some bloodwork. He prescribes all these exams, makes me come back after a week in the same room for the echodoppler (which takes 2 minutes) and says---the ecodoppler is good, the bloodwork is good, it remains to see the LAC test results. As these are not available yet, he says---I won't make you book a new appointment, just come here on this day at this time bringing the test results. I do as I am told, he looks at the results and shrugs, saying---the test is negative, you do not need to take anticoagulants, just take an aspirin if you take a flight.
I therefore suspend treatment with blood thinners, and after a few months I have several blood clots (deep vein thrombosis) that cause permanent damage to the circulation in my right leg (scarring in the deep veins, loss of some valves). After this event, I go to the Sant'Orsola Hospital, and they say that perhaps I should take the blood thinners after all. They make me take again the LAC test, and in one of the reports the agiologist Alessia Libra writes about the (5) positive test results from abroad and the two tests made in Italy: "the patient had a previous isolated [sic] positive LAC test, not confirmed by two further follow-up tests". Since then I had 7 visits with different angiologists at the Sant'Orsola Hospital, including with the Director of Angiology Benilde Cosmi. In occasion of the latest visit, I asked the angiologist Roberta Bortolotti if it is true that the LAC test is not valid when performed, as it was done in my case in these last two tests in Italy, on a patient who is taking blood thinners, or during the acute phase of the thrombosis. She says that it is true. Indeed, the scientific article "Lupus Anticoagulant Detection in Anticoagulated Patients" conclude "Direct oral anticoagulants affect LA detection. Hence it is not recommended to attempt LA detection in those patients. [...] Overall, LA testing is not recommended during the acute phase" I then think: I am lucky to live in a country where doctors give to patients all the information concerning their health, even though only at the 10th visit and in response to a specific question, and where medical diagnoses are not made hurriedly, but only after having thoroughly considered the patient's medical history, the information available, and the relevant scientific literature.
She tells me that in any case in young patients, as they play sports, they try to suspend treatment with blood thinners, which increases the risk of bleeding. I thus think: I am lucky to live in a country where doctors care about youth's health, who is assumed without ever being asked to play sports that put them at risk of bleeding, unlike abroad where I had been treated for 7 years with a medium-low dose of blood thinners, in order to be protected from thrombosis, embolism, ischaemia, and other unpleasant occurrences, and at the same time I also had low bleeding risk. I am so lucky to be back in Italy, where they put an end to this folly, and suspended the treatment with blood thinners. The only donwside is that, due to the thrombotic event that followed, I am at higher risk of having other ones, and therefore now I am prescribed a higher does of blood thinners, which causes a higher bleeding risk. Not to mention the risk of other complications due to latest thrombotic event, such as variscose veins, chronic vein insufficiency, and ulcers, in addition to the chronic incurable it-will-only-get-worse-with-time pain in my right leg that I already have at 38 years of age, both day and night, both while moving and at rest. Indeed, the scientific article "Cessation of oral anticoagulants in antiphospholipid syndrome" concludes that "The risk of a new thrombotic event in APS patients who stopped their anticoagulation is high, even in those who showed a long lasting disappearance of antiphospholipid antibodies".
But I do not dwell on it, because I have the fortune to live in a country where medical decisions, all the more so those with outcomes that are potentially deadly or lead to permanent disability, are not taken lightly, but only after adequately weighting pros and cons, always respecting patients' rights, including the right to be informed, and I have the fortune to enjoy what this country is world famous for: its mountains, its sun, its cities, and most of all, its blood clots.
P.S.
I shared these observations with the Maggiore Hospital, the Sant'Orsola Hospital, the Bologna Medical Board, a patients' rights advocacy group (Tribunale della Salute), a lawyer specialised in medial malpractice, and r/Italia. Neither the Maggiore nor the Sant'Orsola Hospital admitted any wrongdoing. The Bologna Medical Board never replied. The advocacy group shared an anonymous report, based in turn on an anonymous specialist report, saying "while it is true that blood thinning treatment can interphere with the LAC test, however in this case the LAC test was also repeated afterwards, and the result was again negative". I then pointed out that the second LAC test that I took in Italy was also not valid, as pointed out above, but they never replied to me. The lawyer got back to me after several months, saying that they were not able to find any specialist available to give us a legal opinion, which is required to be able to ask for compensation. On Reddit, a doctor commented: "As a doctor, every line you wrote made my blood boil as never before. It goes to show how screwed up we are, I think only a chronically brainless physician would stop the treatment with blood thinners on a patient who tested positive for LAC and ALREADY HAD A BLOOD CLOT". I thus thought: I am lucky to live in a country whose medical institutions that care with such a dedication, passion, and honesty to the health of its people, a Country where you never have the impression of being taken for fool.