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Recommends The Government To Create The Card For Special Protection Of Patients With Rare Disease

Original Language Title: Recomenda ao Governo que crie o cartão para protecção especial dos portadores de doença rara

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People's Party CDS-PP

Parliamentary Group

Assembly of the Republic-Palace of S. Bento-1249-068 Lisbon-Phone: 21391 9233-Fax: 21391 7456 Email: gp_pp@pp.


It recommends the Government to create the Card for Special Protection of Rare Disease Porters.

Exhibition of Motives

In accordance with Decision No 1295 /1999/CE of the European Parliament and of the Council, 29 of

April 1999, which adopts a programme of community action on rare diseases

in the framework of action in the field of public health (1999-2003) " understand yourself as diseases

rare, including those of genetic origin, the diseases that constitute a threat to life

or a chronic disability and whose prevalence is so reduced that its treatment requires the

conjugation of special efforts to try to avoid high morbidity rates or

perinatal and early mortality, as well as a considerable decrease in the quality of

life or the socio-economic potential of individuals ".

It is estimated that there are between 5000 and 8000 different rare diseases, affecting, in their

set, between 6 a to 8% of the population, what will mean the existence, in Portugal, of 600000

to 800000 individuals with this type of pathologies, among which, hemophilia, sclerosis

multiple, lupus, insipid diabetes, Fabry disease, or Gaucher disease.

The bearers of this type of diseases encounter numerous problems because they are

rare, often there are not enough medical and scientific knowledge about the

same to diagnose them, which brings to the patient, inevitably, difficulties in accessing

the high quality health care. Add to other problems such as inequality in the

comparticipation of medications; the absence of Referral Centres; the scarcity of

technical and human supports; the frequent association to sensory impairments, motorists,

mental and sometimes physical alterations; or the non-existence of legislation, only to enumerate

some of these problems. All this brings to the holder of rare disease a huge

vulnerability at psychological, social, economic and cultural level.

On November 27, 2007, the public discussion draft of the National Rare Diseases Programme which presented as general objectives was put to the public discussion:

Improve national responses to the unmet health needs of people with rare diseases and their families;

Improving the quality of health care provided to people with rare diseases .

And as specific objectives:

To create the national network of rare disease reference centres;

Improve access for people with rare diseases to appropriate care;

To improve the mechanisms of integrated management of rare diseases;

Improve the knowledge and national production of research on rare diseases;

To promote therapeutic innovation in medicine for orphan diseases;

To ensure transnational cooperation within the framework of the European Union and the Community of Portuguese Official Language Countries .

This National Program for Rare Diseases has only recently been approved and matters

recalling that the joint decision on rare diseases dates to 1999, being that

countries such as Italy, France, Denmark, Belgium, Bulgaria, Spain, Sweden and Greece, already

they have official national policies for the rare diseases implemented and have Centres

of official Referencing in operation.

There is, thus, still a lot to do in Portugal in what rare diseases concern. When heading to an emergency service the rare disease carriers encounter with

serious difficulties as, most of the times, the emergency doctor has no knowledge

enough about the disease and, as such, do not know what medication may or may not administer to the

sick. Oftentimes, the patient himself fails to explain correctly which disease

of which it is porter and, less so, the usual medication. These situations are quite

common, including, for the parents of rarer rare disease carriers who, in the

an affliction of seeing the sick child, confuse the terminology of the medication.

The CDS-PP understands that it is thus necessary for the existence of a Card for Protection

Special of the Rare Disease Carriers, so that the carriers of these diseases can have

greater quality and safety in the health care provided to them.

This card, which will provide holders of rare disease with a differentiated access to the

emergency services and specialty consultations, contains a chip where would they build the

following data: identification of the patient; pathology of which he suffers; habitual medication;

medication to be administered in the event of urgency and the contact of the attending physician.

The procedure, obviously, should be preceded by consultation and opinion of the Commission

National Data Protection.

Understands the CDS-PP that this is a practical, simple but very effective way to protect the

carriers of rare disease and to safeguard them as to possible cases of urgency, with

that so many times encounter.

By the exposed, the Assembly of the Republic, pursuant to Article 156º (b) of the

Constitution of the Portuguese Republic, deliberating to recommend to the Government that:

1-Create the Carton for Special Protection of Rare Disease Porters.

2-Within the framework of the computerization of health services, all health units

should be equipped with the means necessary for the reading of these cards.

3-The National Data Protection Commission should be heard beforehand.

4-Within a time never exceeding 1 year the Card for Special Protection of Rare Disease Porters should be in operation.

Palace of Saint Benedict, December 4, 2008

The Deputies,