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Partido Popular Party CDS-PP Parliamentary Group Assembly of the Republic-Palace of Saint Benedict-1249-068 Lisboa-Phone: 21 391 9233-Fax: 21 391 7456 Email: firstname.lastname@example.org DRAFT resolution nº 409/X/4th Recommends the Government to create the card for Special Protection of patients with rare disease.
Explanatory memorandum in accordance with decision No 1295/1999/EC of the European Parliament and of the Council of 29 April 1999 adopting a programme of Community action on rare diseases within the framework for action in the field of public health (1999-2003) "shall be understood as rare diseases, including those of genetic origin, diseases that constitute a threat to the life or a chronic disability and whose prevalence is so low that their treatment requires the Special combined efforts to try to avoid high rates of morbidity or perinatal mortality and precocious, as well as a decline in the quality of life and socio-economic potential of individuals ".
It is estimated that there are between 5000 and 8000 different rare diseases, affecting, as a whole, between 6 to 8% of the population, which means the existence, in Portugal, of 600 000 to 800 000 individuals with this type of diseases, including hemophilia, multiple sclerosis, lupus, diabetes insipid, Fabry disease or Gaucher disease.
The bearers of this kind of disease are faced with numerous problems because they are rare, many times there are no sufficient scientific and medical knowledge about the same for the diagnose, which brings to the patient, inevitably, difficulties in access to high-quality health care. There are other problems such as inequality in reimbursement of medicinal products; the absence of referral Centres; the lack of technical and human support; the frequent association with sensory impairments, motor, mental and sometimes physical changes; or the absence of legislation, just to enumerate some of these problems. All this brings to the bearer of rare disease a huge vulnerability to psychological, social, economic and cultural.
The 27 November 2007, was put up for public discussion the draft National Program for rare diseases which presented as general objectives: Improve national responses to unmet health needs of people with rare diseases and their families; improve the quality of health care provided to people with rare diseases. And as specific objectives: Create national network of reference centres for rare diseases; Improve the access of people with rare diseases to proper care; improve mechanisms of integrated management of rare diseases; Improve the knowledge and the production of research on rare diseases; Promote the therapeutic innovation in the field of medicinal products for orphan diseases; Ensuring the transnational cooperation within the European Union and the community of Portuguese-speaking countries.
This National Program for rare diseases only recently been adopted and care to remember that the joint decision in the field of rare diseases date of 1999, with countries such as Italy, France, Denmark, Belgium, Bulgaria, Spain, Sweden and Greece, already have official national policies for rare diseases implemented and have referral Centres in operation.
There is, thus, still much to be done in Portugal in which rare diseases concerned. When heading to an emergency room patients with rare disease are faced with serious difficulties because, most of the time, the emergency physician has no enough knowledge about the disease and, as such, does not know that medication may or may not administer to the sick. Often, the patient himself can't explain properly what the illness is and, even less, the usual medication. These situations are fairly common, even for the parents of patients with rare disease youngsters who, in distress to see the sick son, confuse the terminology of the medication.
The CDS-PP considers that it is therefore necessary for the existence of a card for Special Protection of rare disease, so that the carriers of these diseases may have greater quality and safety in health care to which they are provided.
This card, which will provide the rare disease differentiated access to emergency services and specialty consultations, contains a chip where would set out the following information: identification of the patient; pathology that suffers; usual medication; medication to administer in case of emergency and contact the doctor. The procedure should, obviously, be preceded by consultation and opinion of the National Commission for Data Protection.
Understand the CDS-PP, this is a practical, simple, but very effective to protect the rare disease and safeguard them as to possible cases of urgency, with that so often face.
Therefore, the Assembly of the Republic, in accordance with point (b)) of article 156 of the Constitution of the Portuguese Republic, decides to recommend to the Government that: 1-Create the card for Special Protection of patients with rare disease.
2-within the framework of the computerization of the health services, all health units should be provided with the necessary means for the reading of these cards.
3-must be previously heard the National Commission for Data Protection.
4-within a period not exceeding 1 year card for Special Protection of patients with rare disease will be in operation.
São Bento Palace, 4 December 2008 Meps,
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