LETTER TO THE MINISTRY OF HEALTH AND CONSUMPTION
MINISTRY OF HEALTH AND CONSUMER AFFAIRS
OFFICE OF INFORMATION AND CITIZEN SERVICES:
Paseo del Prado, nº 18-20, ground floor, corner with Calle Lope de Vega, 28014, Madrid
Telephone: 901 400 100
Fax: 915 96 44 80
For the attention of:
Ms. Elena Salgado
Minister for Health and Consumer Affairs
My name is Mª Antonia Pacheco Cumbre and I am writing to you as an endometriosis sufferer and President of the Association of Endometriosis Sufferers in Cadiz ADAEC, my personal details are not relevant as we are sadly a very large group and any name would be valid, since in Spain it is estimated that we are approximately 1,500,000 affected, being the first cause of infertility in women and in 50% of cases the disease is active and painful.
This is to indicate that last March, coinciding with the events of International Women’s Day, International Endometriosis Week was held worldwide, dedicated to raising awareness of this disease, essentially female, as frequent as unknown by most doctors and society in general and that as a disease recognized by the WHO and declared by the European Parliament as a “social disease” is far from the treatment I receive as a patient in Spain.
Although discovered at the end of the 19th century, this disease continues to be a mystery due to its unknown origin, its tendency to reappear, its chronicity and unpredictable evolution and the lack of effective cure therapy, since the treatments continue to be mostly ineffective, giving us indiscriminately brutal hormonal treatments that were created for prostate cancer and not for endometriosis, with devastating and sometimes irreparable side effects that have even been reported on numerous occasions to the F.D.A. in the United States.
Although it affects between 10% and 15% of the female population, many are unaware of it, due to the great symptomatic variety that this pathology produces, because diagnoses take an average of between 7 and 10 years due to the difficulty of seeing it in conventional medical tests, and due to the lack of specialists, which is why it is usually diagnosed late, when the process is already advanced and the possibilities of the foci infiltrating and destroying some organ due to the aggressive nature of the disease, which is very similar to cancer, increase. That is why in many cases when it is diagnosed it is too late, having to remove reproductive organs from women at very early ages and without having had children.
I would also like to comment on and remind you of some very important aspects that I hope you will consider:
1.- On June 27th 2006, the Congress of Deputies unanimously approved a non-legislative proposal, which urged your government to devote more resources to the fight against this chronic disease and to improve the conditions of affected women, for which you committed to create a commission made up of the Ministry of Health, specialists in endometriosis and representatives of the Endometriosis Spain Association, and the results of this commission would be presented to Congress in January 2007. We are now in April and this commission has not even begun its work.
2.- On the 22nd of March 2007, the Andalusian Parliament also unanimously approved another Proposal not of analogous Law promoted by the Association of Affected of Endometriosis in Cadiz (ADAEC) and on the 28th of March 2007 politicians, doctors and women with endometriosis from all over Europe were together in a seminar-lunch held in the European Parliament to become aware of the importance of this disease.
3. – Recently your government has approved the Equality Law, which according to you is one of the most ambitious social measures of the present legislature, not only because it is a measure that will affect 52% of the population of our country, but also because its contents incorporate economic, political, social and labour aspects, but which we consider an “insult”, since it turns its back on our collective, since a percentage of us cannot work, nor lead a “normal life”, in many cases from our childhood/adolescence, Some of us have been denied Occupational Disability Pensions because we have not contributed enough time to the Social Security and we have even been denied Non-Contributory Disability Pensions by the Social Security, because they do not consider this pathology to be disabling despite the fact that we do not have our own economic resources, are chronically ill with no cure and, with the aggravating factor that approximately 30% of us suffer from other comorbid and disabling pathologies, such as chronic fatigue syndrome, fibromyalgia, hypothyroidism, lupus erythematosus, Sjögren’s syndrome, arthritis, multiple sclerosis, asthma, etc. , and we even treat each other in Pain Units.
4. – In addition, and what we consider to be discrimination on the part of its government, it turns out that the Ministry of Defence includes “Endometriosis” among its exclusions for various State Security bodies and the Armed Forces, while its Ministry of Health and Consumer Affairs, on the other hand, lacks protocols for diagnosis and action, specialized multidisciplinary units, of which we have news that there are only three in the Public Health Service that treat cases of endometriosis in Madrid, Barcelona and Palma de Mallorca, of which the Public Health of the other Autonomous Communities “deny its existence” and referral, so most of us have to be treated by private endometriosis specialists in Madrid, Barcelona or Bilbao, to “improve” our quality of life, covering the costs of treatment and surgery out of our own pockets.
5.- Mrs. Minister, from our group of affected people we ask ourselves: Does the Ministry of Defence have privileged information that you do not? And also the Ministry of Labour and Social Affairs, since endometriosis does not appear in their catalogue of diseases to qualify for a handicap and/or disability?
I am totally perplexed by the lack of initiative on the part of your Ministry towards the lack of studies and research teams, economic aid for research and private initiatives, since I am currently aware that the only data and studies carried out in our country are those carried out by the Endometriosis Spain Association, which does not have any type of subsidy or public aid and is supported by the private contributions of its members and collaborators.
As an ordinary citizen who has no knowledge of medical protocols, who does not know about health organisation or economics, I am passing on to you all these doubts and information and I hope that you will take decisions in this regard, since we have at our disposal all these tests, medical reports, clinical histories, etc., and before bringing all this out into the public arena (which could create unnecessary social alarm), since various administrations have already been contacted and given notice of our situation, I would like you personally to be aware of this problem and to direct part of your efforts towards our group.
I attach the links to the pages of the Association of Affected Endometriosis Cadiz.