Antonella Celano founded APMAR in 1984, which over the years became APMARR (Associazione Nazionale Persone con Malattie Reumatologiche e Rare) and in 2000 she became its president. APMARR strives daily to achieve greater investment in early diagnosis and treatment, the elimination of waiting lists, improvement in the quality of life of patients, and the limitation of personal and economic damage resulting from severe disabilities, which burden not only the individual but society as a whole. At the same time, we fight for equal access to treatment in all regions and to promote initiatives that are useful for the sustainability of the healthcare system, such as supporting adherence to treatment and appropriate prescribing, acting as the spokesperson for people suffering from rheumatological and rare diseases with the institutions.
WOULD YOU BE SO KIND AS TO INTRODUCE YOURSELF AND TELL US ABOUT APMARR’S ACTIVITIES?
I am Antonella Celano, president of the Associazione Nazionale Persona con Malattie Reumatologiche Rare. The association’s mission is to improve the lives of people affected by rare rheumatological diseases. All our actions revolve around protecting the right to health and the person.
We talk about people, not sick people, so much so that we have drawn up a consensus document to reach this conclusion with the support of an expert in narrative medicine and an anthropologist. In fact, we believe that the person lives a life made up of a series of facets, among which there is also illness, but we cannot identify the person with illness. It is not a companion, it is something that has unfortunately happened, but from which one defends oneself, one does not live with it.
Similarly, we do not talk about the patient as the focus of treatment. For us, the treatment pathway must be at the centre around which the various parties involved revolve: it is the pathway that must go towards the patient (and not the patient who goes towards the treatment pathway). We are for multidisciplinarity, we are for a total involvement of the patient not only from the perspective of empowerment.
APMARR’S GREATEST ACHIEVEMENT IN RECENT YEARS?
That of having been able to cover the national territory with our activities and to have acted with advocacy actions, so much so that APMARR has become what it is today: a national reality, considered an opinion leader in Italy.
WHAT IS THE DIFFERENCE IN THE DEFINITION OF EXPERT PATIENT BETWEEN THE ONE OF 10 YEARS AGO AND THE ONE OF TODAY?
The expert patient of 2010 is not what we talk about today. Ten years ago the expert patient was not the knowledgeable or empowered patient. Nowadays we consider the expert patient in the sense that he brings a life experience, of living with that particular pathology. He is an expert patient, aware that he knows all the facets of the pathology, he is empowered, he urges to be a protagonist in the treatment process, in the same way as the other actors involved and he is aware of the consequences he would suffer if he did not adhere to the therapy. This is why doctor-patient communication is important, because obviously good communication is not only part of the treatment process itself, but also serves in daily practice to improve adherence and quality of life.
From this point of view, the patient is also a resource for the national health system: if one knows one’s own pathology in depth, if one knows one’s own body and the signals it gives, one is able to self-manage (up to a certain point) the disease and not always go to the doctor. Today the expert patient is also the one who is trained in R&D and can also be involved in the design of clinical trials.
DO YOU THINK THAT STORYTELLING CAN BRING ADDED VALUE TO MEDICINE? WHAT ARE THE POSSIBLE ADDED VALUES THAT NARRATIVE BRINGS?
The person is not just a symptom, is not just a joint, is not segmented with respect to the disciplines/specialisations that take care of it. The person has to be considered in a holistic way. Narrative medicine is a discipline in its own right, which, when combined with evidence-based medicine, creates the opportunity to get to know facets of the person that one would not otherwise know: life projects, the context, whether the person works, the whole world of this person. A narrative interview, which can accompany or even anticipate the visit, helps to understand certain behaviours of the patient that would otherwise remain unknown. So, by combining the two disciplines, we can achieve comprehensive care.
THE RESULTS OF THE SPARE PROJECT SHOWED THAT PEOPLE COME TO EXPERT RHEUMATOLOGISTS TOO LATE, THAT THEY HAVE ALREADY VISITED MANY OTHER DOCTORS, THAT THEY LIVE WITH THIS VERY STRONG PAIN FOR WHICH THERE COULD BE TREATMENTS, THAT WOMEN IN PARTICULAR ARE NOT BELIEVED AND THAT DOCTORS OFTEN THINK IT IS ONLY A PSYCHOSOMATIC DISORDER. THEREFORE, THE THEME OF PREJUDICE ABOUT LISTENING TO WOMEN EMERGED (PERHAPS BECAUSE MEDICINE IS STUDIED ON MANUALS DESIGNED FOR MALE PATIENTS AND THEREFORE DOCTORS KNOW LITTLE ABOUT THE PHYSIOLOGY OF THE FEMALE WORLD?). HOW DO YOU THINK THE EDUCATION OF DOCTORS SHOULD BE CHANGED? AND WHAT CAN PEOPLE DO ABOUT IT?
You have to start by listening to your body and recognising what the alarm bells might be. In this way, when you go to the doctor, you can be more incisive. If you complain of what is interpreted as ‘a trivial backache’, you don’t go to the doctor to ascertain the type of pain.
I find, in this regard, an emblematic example of delay in diagnosis: a person who brought his experience during a press conference on the occasion of the world day of spondylitis – a pizza maker from Milan who was totally bent in two because for fifteen years he had endured back pain at night, then in the morning he could hardly get up and move, he went to work and so on. The doctors he went to associated his back pain with the hard work he did.
These are examples of how little consideration is given to pain, especially in diseases in which there is no immediate bodily change.
These are therefore also occupational diseases. People with rheumatological diseases are second in our country in terms of the number of working days lost. This is why we insist on early diagnosis, early treatment and adherence to therapy: when the drugs are prescribed and taken early and properly, following the doctor’s instructions, the disease goes into remission and you get back to taking your time, your work, your family, your social relationships.
WHY DO YOU THINK THE SPARE PROJECT HAS HIGHLIGHTED SUCH AN OBVIOUS GENDER ISSUE?
It used to be thought that spondylitis was a predominantly male disease, but today the numbers tell us otherwise.
We need to solve the problem of the time it takes to make a diagnosis and, as I said before, we need to inform people about the symptoms and the warning signs to look out for.
We can say that today almost all pathologies are underestimated, as if we did not realise that in order to reach a diagnosis it is necessary to start by investigating the symptoms.
WHAT CAN BE DONE FOR TERRITORIAL HEALTHCARE IN ORDER TO OBTAIN AN EARLY DIAGNOSIS AND BE AWARE OF THE CHARGE OF THIS DISEASE, WHICH IS ALSO AN EMPLOYMENTAL AND GENDER DISEASE? INFORMATION CAMPAIGNS? FROM SPARE, IT EMERGED THAT THE WEAK LINK IS THE TERRITORY…
Today the territory is suffering more than ever, as we have seen since the beginning of 2020!
Outpatient clinics are closed, visits are cancelled, surgeries are postponed, and diagnoses are delayed, the effects of which will be felt in the coming years in terms of increased social costs. With Covid, it seems as if everything else has disappeared; it seems as if chronic diseases no longer exist; everything revolves exclusively around Covid.
And if before, a person complaining of a symptom would wander from one specialist to another before arriving at the right one, in our case the rheumatologist, who would finally make a diagnosis, today this path is even more complex.
We need to improve services, infrastructures, invest in training and staff, reduce waiting lists to a minimum… In short, we need to adapt the supply to the demand for health. …
It is also necessary to focus on information, to provide tools not only to the patient but also to the doctor: information must be disseminated at all levels. Recognising the symptoms of a disease leads to early diagnosis and therefore early treatment, which totally changes the outcome of the disease. Obviously, citizens should not make a self-diagnosis, but should avoid turning to ‘Dr Google’ to get it; on the contrary, it should be the doctor who gives the right information and directs them to the right specialist.
TWO ASPECTS, THEREFORE, NEED TO BE IMPROVED: ONE OF THE SYSTEM, INCLUDING THE ENDLESS WAITING LISTS AND A SHORTAGE OF HEALTH PROFESSIONALS WHICH COVID HAS NOW ALSO ABSORBED; THE OTHER OF THE METHOD, WE MIGHT SAY, NAMELY THE DOCTOR’S ABILITY TO LISTEN.