Right to health: privilege for a few, utopia for many

Insight by Michela Grasso, SPAGHETTIPOLITICS

In May 2022, a bill proposal was presented to the Italian senate to have vulvodynia and pudendal neuropathy recognized as invalidating and chronic illnesses by the National Healthcare Services (SSN). These are "invisible" illness affecting hundreds of thousands of people. It is estimated that 16% of women suffer from pain associated to vulvodynia in the course of their life, a common illness, but unrecognized by the state. 

Suffering of vulvodynia means living closely with vulvar pain, struggling to fulfill everyday action, such as cycling or crossing the legs. Pudendal neuropathy, on the other hand, is a rare illness that affects 4% of the patients with pelvic pain, but it is extremely debilitating. Pudendal neuropathy can originate from an inflammation or the damage to the pudendal nerve. The pain is so intense that 70% of those who suffer from it struggle to stay seated, and are forced to spend most of their time laying down.

Recognizing these two illnesses as chronic and invalidating, would allow for the creation of guidelines for therapy, together with a specific formation to doctors, with the goal of reducing delayed diagnosis and guarantee a more serene life to the patients. 

«I think of the sick person, who has to live their physical indisposition in its complexity, without thinking about which excuses to invent to skip work, without having to worry about money or having to ask your own parents for economical help, because you are unable to self-manage due to a classist system. I think that any person that lives in a debilitated physical state should have the right to "serenity" and be protected. They should live their illness with the security of getting help». This explains Gloria Pallotta, 24, artist and activist, who recently underwent a surgery for endometriosis, one of the so-called "Invisible illnesses". 

The economical nature of an illness' recognition includes the possibility to ask for subsidies, assistance and to have one's own fiscal disability recognized more easily. «We spend our whole life asking for help, hearing doctors telling us that we have nothing. Some people live this invalidation even at home, at school or on the workplace. When I think of recognition I think about this: not suffering from psychological violence anyore. I myself have lived situations of invalidation of my illness, due to the people I have met in public and private hospitals».

Gloria is one of the 23 million women that suffer from endometriosis in Europe, an illness that affected more than 10% of women in fertile age in Italy. According to the San Raffaele hospital of Milano, «Endometriosis consists in the establishment and off-site growth of endometrial-like tissue, that is, the mucous membrane that lines the inner wall of the uterus and which flakes off during the menstrual cycle». In the case of Gloria, it all started with a small adenomyosis, or a growth of endometrial-like tissue inside the uterus.

Gloria's ordeal began at 16, with menstruation accompanied by unbearable pain, which increased after surgery on an ovarian cyst. «After four years of diagnostic research, I was told that I suffered from adenomyosis, for which I was prescribed a contraceptive pill that was supposed to improve the situation. Because of the pill I had a pulmonary emboly, I did not do any specific medical exam before prescribing it». Gloria is not the only person to have suffered a case of medical malpractice. Like her, million of people suffer from medical carelessness and invalidation every year. Flagged as exaggerated, crazy or hysterical, many women find themselves suffering without valid explanations. «Before receiving a serious diagnosis, I had to see a dozen doctors. Once I went to the hospital with severe bleeding and was discharged by the nurses who were laughing, telling me that I had nothing. After the pulmonary attack I had to start physiotherapy to resume walking, I was told to cure myself with yoga and acupuncture», adds Gloria.

A disease such as endometriosis causes 33 million days of work to be lost every year in Italy alone. But its impact is not limited to productive effort, suffering from a chronic and debilitating disease means having to give up social life, sport and, sometimes, even education. Yet despite its devastating impact on the daily lives of millions of women, it still takes on average 7 years to diagnose it. The patients have to go through years and years of invalidation and suffering before receiving an answer. Often, people rely on private visits for the urgency of their pain, spending thousands of euros every year. And not only, for those who live far from specialized centers - which are often not a guarantee -, the economic and physical costs of the trip must also be added.

Every year, one million Italians move from the area where they live to have access to health services not available in their place of residence. In Italy, there are three regions that dominate in regard to the offer of medical services to those coming from afar, Lombardia, Emilia Romagna, and Veneto. Lombardia is the Italian region with the lowest rate of admissions outside the region of residents out of the total admissions. The Italian region with the highest rate is Calabria, followed by Campania, Sicily, Puglia and Lazio.

Chiara Stefanetti is 37 years old, she lives in Lazio, in Monte Porzio Catone with her husband and their two daughters. «I used to like to shave my hair, wear it short. Now I don't do it anymore, when I tried it it seemed to me that my head was scalped by the pain of fibromyalgia», she says. Over the past ten years, Chiara has had to face a series of chronic and disabling diseases that have completely changed her life: endometriosis, adenomyosis, vulvodynia, fibromyalgia, and pudendal neuropathy. Her clinical path is long, filled with invalidation, pain and diagnostic delays. Chiara recently opened a fundraising of 10,000 euros to allow her to move to Pordenone for four months, where she would perform a sacral neuromodulation surgery. The operation is aimed at reactivating the physiological functions of the bladder and rectum, which were lost during a total hysterectomy due to adenomyosis. «I no longer want to be treated in Rome. Maybe other people here got along well, but I didn't, I have had traumatic experiences. Although there are specialists, they have never had an empathic relationship with me. One day I went for neuromodulation surgery. The procedure started with an infiltration of anesthetics. When I entered the operating room, they put a gown over my clothes and pulled my pants down, starting with the injections. No one explained to me what would happen next, they made me sit in the waiting room to wait for the anesthesia to take effect. When I sat down, probably due to the injections between my sacral vertebrae, a shock went through my body, and having difficulty with physiological functions, I peed on myself. I stayed like that for half an hour, sitting waiting for a doctor», she says.

After a diagnostic delay of seven years, and after several therapies and operations, Chiara's body is exhausted. She has been suffering from insomnia for years, due to the pains of fibromyalgia that keep her up all night. Chiara has a hard time sitting, and therefore has to spend most of her time lying down. For this reason, she has no job and cannot drive or leave the house. «My husband has been unemployed for three years, he had to leave his job to take care of me and the girls. We manage to survive on what the state passes through to us due to my disability and the help of my grandparents». For the intervention in Pordenone, Chiara will spend about 10,000 euros, and at the moment she cannot afford it. In recent years, in fact, she has had to pay around 20,000 euros for various specialist visits, travel and therapies related to her pathologies. Although the intervention is covered by the SNN, the months of residence in Pordenone, the travel and the assistance that she will have to receive at home are at her own expenses. For some time now, Chiara has been managing "E.M.M.A Odv", an organization that supports people with endometriosis and promotes a new approach to treating the disease. «For my 35 years my husband gifted me a camera. Photography has always been a great interest of mine. I used the camera for some time, when I was still able to go out. I also took a photography course during the lockdown to restore my dignity, but now I can't take it anymore. Often the fear of feeling pain is what holds me back and brings me down».

Edoardo Ostardo, head of the Neuro-Urology and rare neurological diseases department of the Santa Maria degli Angeli hospital in Pordenone is one of the few doctors in Italy who is specialized in the implantation of neuromodulators. Indeed, it is he who is in charge of Chiara's case. The operation consists in inserting an electrode that delivers impulses to relieve pain or to help the nerves during bladder and bowel functions, explains Ostardo in an interview with La Repubblica. The electrode is then adjusted by the patient, but it takes a few months before the treatment is deemed satisfactory and appropriate for the patient.

«I happened to say to some patients: it would have been better if you had had cancer, because then you would have had all the health facilities available to meet the need for tests, checks and therapies», Dr. Ostardo tells to Voice Over Foundation, «It is very difficult to admit the suffering of people when it comes to rare diseases».

Italy has been a pioneering country in terms of the recognition of rare diseases. In fact, in 2001, their own list was drawn up, even taken as an example by other European countries. Then, however, Italy did not update itself adequately, despite the creation of a new, more complete list by the European Union. When Ostardo talks about rare diseases, he focuses not only on the aspect of physical pain, but also on the devastating impact that a disease can have on the patient's psyche.

«The relationship between a doctor and his patient is also made up of pain and tears. It may happen that some of my colleagues take many things for granted when examining a patient but the truth is that nothing should be taken for granted. It is often easier to deal with a disease in a schematic sense, without looking at the set of domains and elements (muscular, psychological, etc.) that make up the picture of the situation», he explains, adding that one of the most urgent problems of the healthcare system is also the treatment of doctors, «There are more and more cases of burn-outs, we need to act on the level of humanization, but also on the trade union level. By giving the right remuneration to health workers for their effort». The issue of health in Italy is thorny, and its problems and solutions are wide-ranging and embrace various fields (trade unions, humanitarian, infrastructural, training, etc. ..).

The stories of Gloria and Chiara tell us how fundamental it is to bring at the center of the public debate the right to health and the right to have functioning health structures in one's own territory. But their voices also tell us how difficult and painful it is to live with a chronic and debilitating disease, not recognized as such by the state. Every day millions of people wake up, aware that they do not receive the same care and treatment that is given to other equally sick patients. "Imagining to live with a disease recognized by the state? I can't do it, it seems like a utopia to me", says Gloria.