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Rare diseases, what we NOT do?

23 Mar

Where would we be if – instead of political as abstract rights – in recent years, about rare diseases (> 400,000 carrier in only Lazio), we had simply asked (officials, patients, associations and so on):

  • number of carrier for codes /groups, such as how many disfunctional at the 45- 66-74%, how many ‘active’ with high frequency (monthly or weekly) treatment and what low (2-3 times a year)
  • number of diagnosed by a certified center and how many actually in charge with specific protocol at a general hospital,
  • how many profiles have a medical emergency, those who have a first-aid reference
  • what are the secondary pathologies by macrosectors than the rare and congenital diseases and what are disabling or disfuntionalizing or degenerative etc.
  • how much percent of federal (USA) /national (UE) funds are welded by the ministry and in what time (3-6-9-12-18- more monthes)
  • how many carriers ha such checks are made so that they are not exempt prescribed medications related to other diseases … that should pay the Regions
  • where do active carriers statistically leave for exemption (social / insurance) code, jurisdiction of residence and healthcare center

As reported by those datas, we found out – investigating the reality instead of ipothize ‘rights’ – no small thing:

  • we have to create a health and welfare infrastructure and the mayors have a very important role in our style /quality of life,
  • healtcare bureaucrats must take their share of responsibility action ‘from above’ (infrastructure, standards, access, transparency, telematics, etc.)
  • without knowing who and what to treat – in the case of chronic sicks it is on arches than a decade – it is not a good idea to do business restructuring and personell competitions
  • knowing that the future is of rare diseases, for years e could to provide for more general clinic and minus cardiologists and gastroenterologists as hypertension and reflux are geriatrician and not serve whole departments and chairs for those
  • no case is individual and no anomaly has an end in itself: the emergency has not even finished it all until to we plan and implement a new better standard, learning from mistakes
  • new discoveries biomedicofarma made clear already 15-20 years ago that there would be only general hospitals and polifunctional nursing / clininics as GPs would need to associate with pediatricians, geriatricians, physiotherapists etc. to withstand the costs of buildings, certification and maintenance, clinic and telematics
  • a model were public offers only ‘big hospitals’ and ‘infinitesimally small clinics’ while the rest is outsourced to private or worse (welfare, welfare! ) a non-profit organization of very low level
  • not all doctors can be absorbed by the ‘very well payied’ healthcare system, but the quality of a doctor is not certified by his wealth as another worker: the medicians know this, the patients not as them …

And with those datas – which by the way Courts and Bureaus could also claim – we also will have solutions (rights and standards as costs and locations) at hand …

Original posted on demata