Today is the World Day of Rare Diseases. This year’s theme is “Rare Diseases Without Borders.” In many countries there are no possibilities or knowledge for the correct diagnosis or treatments. According to experts, international cooperation is the only way that you can get to wherever a high level of access to care and medications.
What’s about Italy?
According to a recent report by the National Bioethics Committee rare diseases involve situations very burdensome for one million Italians who is officially affected, with perhaps two million people that are still waiting for a diagnosis.
All this happens not because of the disease itself, but for the decay of Italian NHS, fragmented in our Regional Health System, and the profound disinterest of politicians, institutions and medical associations.
According to the report, in fact, the problems of individuals and families of patients mainly concern:
1. difficulty or impossibility to access the correct diagnosis – due to the failure to identify a clinical reference center specialized in the disease in question – with the worsening state of health of the patient;
2. delay in diagnosis that adversely affects prognosis;
3. lack of scientific knowledge and information about both the disease, both on existing laws and rights;
4. lack of adequate medical care and rehabilitative or psychological therapy if necessary, taking into account the nature of most chronic and disabling of rare diseases and the disruption and destabilization that the experience of the disease involves the patient and family;
5. difficulty of access to treatment and care, which affects both the availability of new drug-availability, of high or very high cost, specific to a particular rare disease already on the market in Europe and, when there are no specific aetiological therapies , access to other possible treatments;
6. strong inequalities – at regional and local level – to access to diagnosis, treatment and innovative, more generally, health care and social services;
7. high costs of treatment, overall, and the lack of support measures that meet the needs of daily supervision and continuous determined by pathology, the contents of which falls almost entirely on the family, causing impoverishment and often expulsion from the world of work;
8. precarious conditions, often perceived as serious or very serious people with, even after getting the diagnosis;
9. heavy social consequences for the patient (stigmatization, isolation in school and in work activities, difficulties to build a network of social relations).
With all the money that Italy spent for rare diseases, this ‘bulletin of horrors’ ‘should ‘attract’ the attention, by time, of the Court of Auditors and the Order of Physicians, as well as civil society as a whole.
If we look to politial responsabilities, the game is won easily, because Rosy Bindi, actual president of the Democratic Party and former Minister of Health, was the one person that issued the disastrous laws we have on mental health, the health service, disability, disease rare. A planetary goal.
But it does not end now, it’s just the tip of the iceberg.
In fact, the report of the National Bioethics Committee does not tell that:
1. rare diseases included in the list of disabling diseases are only five, compared with more than 3,000 classified. It is crazy and uncorrect;
2. Italian State has accepted just formally the guidelines set by the World Health Organization, issued in 1992, about work and disability, which are based on the principle of the functional limitations and not on the classification of the diseases or the irreversible biological damages;
3. a lot of regional centers for rare diseases have not been established or have been outsourced on private facilities, usually Catholic;
4. orphan drugs are available only in some hospitals and are forbidden in private clinics;
5. coordination for biological samples or networking is non-existent but it was heavy financed;
6. management of any other disease does not occur as a function of the rare disease that the primary pathology and the law do not previde a coordination function for the centers;
7. a lot od patient, maybe all, have to undergo continuous therapy and routinely travels dozens of miles just for an infusion.
Even worse if we look at the situation of the Italian non-profit organization.
A reality estremely fragmented, often loyal just to a medical or research center, so that gets donations and means regardless of the effective qualitaty, but only on the basis of visibility that the association is able to obtain. Just get a sick who is a celebrity or influent member of the community to exalt a mediocre center and vice versa.
In addition, some of these associations absorb most of the donations to exist and the rest ends up ‘for search’ or ‘health center’ or ‘departments’. Excepted certain types of diseases for which is expected to accompany by public contribution, many organizations normally do not provide direct services to the sick: you are alone in the hospital, at home, in taxis or ambulances.
Indeed, some spread incorrect health informations, even among those ‘validate’ or publicized by the principal Italian Health Organizations.
Italy spent millions of euro for the information through physicians, associations and charities, but will perhaps thousands, at least, those spent to count the sicks and whether and why are not met.
Really inexplicable why this happens, if you do not want to count that we are in the Italian Cleptocracy.
A problem confirmed by the ‘Dossier on the subject of rare diseases of 2008-2010, edited by Cittadinanzattiva Tribunal for Patients’ Rights, National Coordination associations chronically ill, which indicates:
1. ‘difficulties’ to enjoy the benefits provided by law
2. strong differences that exist from region to region,
3. more than 40% of patients do not often have access to essential drugs.
A Dossier, by Cittadinanzattiva and the Court for the rights of the Sick, that forgets to tell us how many cases of medical malpractice are happened or the number of disputes initiated by patients. As it does not explain why these powerful associations do not give legal assistance to victims of medical malpractice nor protest for laws and in the courts, which take decades to sentence and repair the damage suffered by the patient, if alive …
Class Actions, allowed by law, not even to hear about it, while medical malpractice cases – registered by the companies that provide doctors and hospitals – would amount to one hundred thousand a year, let alone how many are those, minimum or glamorous, so there is resignation and they are not complaint.
According to Sole 24 ore “Health Focus” of 11 to 17 November 2008, inadequate health care and lack of access to rights, or ‘cost and inconvenience, would lead to the abandonment of care by 1 patient 4 to which must be added a 37% who abandons for bureaucratic obstacles’, which obviously are posed by different hospitals and local health authorities.
Other studies have found that:
1. 57.9% of patients are forced to bear the costs of personal care at an annual cost ranging from a minimum of 800 to a maximum of € 7,000 (2008 study of the Court of patients’ rights);
2. for many parents to meet the care needs means worse off work, if you do not stop (Pilot Study ISFOL13)
3. among families participating in the study many live in conditions very low income and almost 20% have been forced to resort to loans, to deal with the management of the disease.
Important to know that in Italy we all are obliged to the ‘right to compulsory the NHS’ – words used by the Ministry of Health, which does not specify how much it costs to each of us this ‘obligatory right’ and why, payed taxes for social security, workers can not contract insurances with the money that remains them. Supplementary insurances exist, but in private clinics orphan drugs are not allowed by the state. In a nutshell a sick rare Italian is forced to go to a public hospital. He has no choice.
It is therefore a euphemism about Medical malpractice when it has to do with a sick rare Italian. Should we talk about martyrs.
Questions those add other questions. As a pair, addressed to our physicians:
1. how can the Order of Doctors do not expect a clean sweep and when will do justice for the sicks, if 370,000 of the rare patients (37% of those known) does not want cares, owed for free, but unobtainable, because of the rules are inconclusive, inappropriate, inadequate? How can the Judiciary and the National Institute of Health not to intervent?
2. which is the degree of awareness of rare diseases, procedures and laws regarding health, by our doctors? Because they do not arise in defense of their patients because the Machine will make adequate laws and procedures? Are they the Machine?
As for the rest, it is useless to ask how much money we’ve thrown in the past ten years and in which pockets are finished.
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