Portal de Totana
www.portaldetotana.com
The delegate from ERDF Murcia, Juan Carrion Tudela, presented at the local office of the Association for Rare Diseases in the Region of Murcia (D'Genes) the first study of socio needs of rare diseases (Seriously) promoted by ERDF and a Box .
Affected by Rare Disorders (ER) feel isolated and in many cases outside the NHS.
The lack of information about these diseases difficult to diagnose, treatment and causes a long pilgrimage to the Spanish territory in search of answers and resources that often do not exist or are very difficult to find.
So far, the Spanish Federation for Rare Diseases (ERDF) could not do more than enunciate this view based on data collected through its Information and Guidance Service (WIS).
However, for the first time in the history of Spain, a pioneering study provides scientific data on the real situation they are facing everyday families suffering from a rare pathology.
First we talked Sociosanitary Needs Study of Spain (Seriously) Federer and Social Work have developed a box and put on the table a simple image, "the ER are affected by pilgrims, travelers looking for a permanent diagnosis and treatment.
These families suffer from a chronic form of the great difficulties of her illness, compounded by the lack of assistive devices, specific to their condition, "said Claudia Delgado, director of ERDF.
The study thus marks a milestone in collecting, for the first time, data regarding the diagnosis and geriatric care, support and assistance due to disability, social inclusion and employment of the group of people affected by rare diseases.
Although it seems a minority group that could think, who suffers from a rare disease, is actually composed of 3 million people who feel isolated and subjected to a continuous journey in search of answers.
Painful Pilgrimage: 1,500,000 travelers affected by the NHS
Specifically, the study Seriously says nearly half of those affected had to travel in the last two years outside the province because of his illness.
Of these, the report moves that about 40% have moved 5 or more times while 17% have not been able to do even if it's needed.
These families have been forced to travel more frequently did in Madrid and Barcelona, but also the movements were carried out to other provincial capitals such as Valencia, Córdoba, Alicante, Badajoz and Seville.
The consequence of this pilgrimage is immediate: "unacceptable delays diagnosis, misdiagnosis and treatment application, in some cases harmful, aggravated by the impoverishment that results in many trips, which in most cases should pay for themselves.
All this implies a strong impact on the family, psychological and economic. "
However, the lack of medical and scientific information on the ER for those affected makes such journeys are unavoidable, since the main reasons for them are getting a diagnosis, treatment or access to medication is needed.
Household impoverishment: 20% of family income is spent on disease
One of the main reasons for medical pilgrimage is to obtain adequate therapy.
And precisely in the access to this therapy is another major obstacle to Seriously Study reveals, "because the high cost of these drugs and not always covered by Social Security.
Thus, the report indicates that 36% of those affected coverage of medical devices by the Public Health is low or nil. "
"The lack of specific information on these diseases has caused are not or have reviewed the benefits of treatments included in the Portfolio of Services National Health System" signal from ERDF.
Specifically, within this portfolio does not include various types of therapeutic products, as well as technical aids, which are essential for monitoring and treatment of complications inherent in this type of disease (eg, protective skin creams, lotions, dressing , etc ...).
These medicines and medical aids do not apply in exceptional circumstances, but treatment of those affected are continuous or long-term in 85% of cases, the report said.
According to the director of Frederick, "the ER is heterogeneous disease mostly genetic and chronic diseases.
This causes the costs of treatments are permanent in most families.
To this, add the great threat posed to the health of those affected, as are diseases with risk of death or permanent disability and a high level of complexity. "
So, as a result of the above, according to the study seriously, the cost of diagnosis and treatment of disease is about 20% of the annual income of each family affected.
"In absolute terms, this means an average of more than 350 euros per family per month, a figure very representative of the high cost of care for rare diseases," continued the director of the organization.
Specifically, more detailed, to cover costs in most cases, are related to the procurement of medicines and other health products (indicated by 50% of respondents), medical treatment (rehabilitation, physiotherapy ... ) (43%), technical aids and orthopedic (30%), adapted transport (27%), personal care (23%) and adaptation of housing (9%).
Lack of access to treatments: only 6% of patients using Orphan Drugs
Access to treatment is another major challenge for families.
According to the study, one in four people is difficult or impossible to access the products you need.
Specifically, the main difficulties in obtaining them are the excessive price product (48%), lack of existence of the product (31%) or that he has to get in another country (23.30%).
Regarding Orphan Drug, the study shows that only 6% of patients using them, and from them 51% of households have difficulty accessing them.
These figures are a reflection of what happens in relation to these drugs.
"From ERDF, is to be noted that in Europe, of all designated drugs, only 43 have been approved for marketing.
It is therefore requested to guarantee accessibility in a timely manner of orphan drugs needed for treatment of ER throughout the national territory. "
Promote Centres, Services and Reference
These data provided by the Study Really do more than reflect the urgent need to develop Centres, Services and Reference (CSUR) for these diseases to have access to any patient, regardless of the Autonomous Community where you live.
The aim is "to provide people with an ER quality geriatric care and ensure access to such care regardless of where you live, taking into account the principle of equality and equity," added the president of ERDF.
That is why, since the organization have made submissions on the Draft National Strategy for Rare Disorders presented last April 23.
In particular, and to respond to the challenge with the ER, it is crucial that chapter Centres, Services and Reference (CSUR) Strategy prioritize the inclusion of representatives of those affected by the committee of experts who advise Designation Committee CSUR.
"It is very important to contemplate the need for patients to participate in the Nominating Committee of the Centres, and during the course of the same, as in other countries.
In the area of the ER, where knowledge is scarce and scattered, patients become real experts of their disease.
Moreover, we identify CSUR vital they are working on a voluntary basis, certify and provide them with tools to perform this task.
That would achieve the creation of quality reference units, certified, coordinated, and network at national and European level. "
Lack of information: One in 5 affected takes 10 years to be diagnosed
This lack of information, which highlights the urgency of the Focal Points, is reflected in the Studio notebooks Really addresses the issue of diagnosis.
In particular, according to the report, the estimated average time lag between the onset of symptoms to diagnosis is reaching almost 5 years, while for 20% of patients this delay exceeds even 10 years.
This diagnostic delay experienced by almost two thirds of those affected, assumed consequences of every type and severity.
The most common of these is not receiving any support or treatment (42% of cases), but also highlight the receiving inadequate treatment (27%) and worsening of the disease (28%).
The difficulties in obtaining the diagnosis and the time lag in this process are key to medical treatment received by the person, and the development of the disease.
Only 47% of people claim to have ER treatment they need, while 42% said no treatment is available or if available, considers it appropriate.
Rejection: 76% of patients have felt discriminated against because of his illness
But these are not the only consequences of this lack of information.
Over 45% of those affected have not been satisfied with the health care they receive and 55% of cases are due to professional ignorance towards it.
Affected the perception of the treatment of the disease goes a step further seriously.
In this way, a particularly significant fact is that 76.66% of those affected have experienced discrimination at least one occasion because of their disease.
Specifically, the areas have been in health care (32%), in the enjoyment of your leisure (32%) in education (30%) and activities of daily living (29%).
Support Needs: average dedication to caring for a sufferer is 5 hours
Assessing the degree of disability is another area addressed.
Over 70% of those affected have the certificate of disability, although 35% say they are dissatisfied with the extent known, usually because they feel that they are not made an adequate assessment for lack of knowledge about the disease.
However, although 70% have a certificate of disability, only one out of every 5 is recognized, of which only one out of 3 have already received benefits.
In relation to day care, people with rare diseases, generally, need support to develop basic and advanced activities of daily living, particularly in his domestic life (44%), travel (42%) or mobility (39 %).
Only 1 in 10 would not need any support.
According Really, the most common is that ongoing supports that are required to be dispensed by their own relatives living at home, mainly the parents (41%), but also brothers (17%), spouses (14%) or grandparents (10%).
The half-time in such care is about 5 hours a day, while 43% say they do not need daily personal support.
However, among those who need it, 42% needed more than 8 hours a day.
The intensity of support to be applied by the primary caregiver, has great impact on it, both in their social life, work and training.
Nearly all have less free time as a result of this, but 41% of cases were lost job opportunities, 37% have had to reduce working time and 37% were lost opportunities training.
In this situation, ERDF has made contributions around the Law Unit within the Commission CERMI rating.
Among the proposals highlighted the need to ensure that the Individual Care Plan (IAP) takes into account the real needs of the person tested and his family, and not reduced to mere information on the benefits or resources.
In addition, calls to ensure in all regions, an organ of consultation, participation and advice on the Act in which entities are represented and patient.
This and other measures referred to "avoid the specificity and lack of information in the ER difficult to evaluate the degree of dependency of people affected," claimed from the Organization.
National RE Strategy
For Federer, the study demonstrates the need Seriously known as the "Pact of All for Rare Diseases" which requested a final political commitment to promote a comprehensive strategy "multi" and "multi-territorial" that allows patients to achieve a true health integration , social, educational and labor.
In this vein, on 23 April the Ministry of Health presented the Draft National Strategy for Rare Disorders is developing.
However, although ERDF appreciated that the Strategy document is an important step in improving the performance of the ER, also appreciates the measures are generally insufficient and not specific enough in relation to expectations and needs affected "Really reflected through."
The Federation considers it as essential that all parties concerned should make an effort to achieve equity of patients and their families, so as to meet the specificities of this group and reach self-satisfaction of their needs, equal with other citizens, in accordance with Article 9 of the Constitution.
In this context, ERDF continue to stress the need to avoid this
Strategy ends up being a statement of good intentions and it highlights how necessary the inclusion of a number of proposals.
"First, from ERDF suggest improving the text of the Strategy, to include the key proposals of the Report of the Senate, responsible for analyzing the particular situation of those affected (23 February 2007), and the measures proposed by European Commission, where he urged Member States to 'before end of 2010 have been prepared and adopted comprehensive plans in ER.
Furthermore, we call defining priority actions in the Action Plan with specific objectives, clear deadlines and budget sufficient to ensure the implementation of the Strategy. "
In this context, ERDF proposal continues to regard as essential for the implementation of the Strategy, the promotion of a specific coordinating body of information for rare diseases.
This is one of the focal points for meeting the needs of patients.
ERDF appreciates that this coordination is essential to ensure fairness for families.
In short, rare diseases "we must take them very seriously."
Source: D´Genes. Foto: Murcia.com
Privacy policy
- Legal notice
- Cookies