Hello, Members of the Association and their Families,
Our fate has brought us together in a difficult period of our lives when we not only suffer from a serious disease but also have to battle for treatment. This is what has encouraged the need for mutual understanding and assistance. So far, each one of us has gone their separate ways, which were not easy. What remains in the memory is pain, digestive tract disorders and other ambiguous symptoms. Then medical consultations began with tests, stays in hospital and more and more accurate diagnostic methods, which, sadly, would not lead to a proper diagnosis. There were many drugs, therapies and remedies, all ineffective.
Later came recurrences, more frequent and more severe each time. More tests. More therapeutic attempts. Months went by, then years, and the improperly treated disease progressed. If intestinal occlusion occurred, and during an operation it was feasible to remove the primary source, the battle was won. If the source could not be removed and liver metastases occurred, it was possible to surgically or by way of biopsy obtain material for histopathology and, finally, reach the diagnosis.
Carcinoid is generally known as a slowly progressing cancer, which, in some measure, can be treated. Resection is the most effective method. In those cases where surgery is not viable and metastases occur, it is necessary to resort to treatment by radioactive isotopes: Yttrium 90 and Lutetium, which connect with the receptors of cancer cells and have an effect that can be described as irradiation of the tumour interior. The follow-up treatment involves Sandostatin Lar, which not only decreases the hormonal activity of the tumour, but, in the opinion of many American oncologists, also decreases its blood supply and growth.
This is where our problems begin. Sandostatin and radioisotopes are very expensive, and they are not refunded by the National Health System. Moreover, modern carcinoid treatment methods are unknown to many doctors.
We all have our own bad experience in this case and this is what has become the stimulus to establish the Association of Carcinoid Patients.
Dr Alina Bielowicz-Hilgier
22.III.2005 First Founding Meeting
The managing board was summoned:
Dr Jarosław Ćwikła - President
Dr Andrzej Hilgier - Vice President
Alina Nadolska-Cegiełka - Secretary
Paweł Graniewski - Treasurer
Ewa Żochowska - President of the Scrutiny Committee
Marzanna Popiołek - member of the Scrutiny Committee
Krystyna Falska - member of the Scrutiny Committee
Other members: Jarosław Arkuszewski, Joanna Hilgier, Stanisław Popiołek, Norbert Gabarkiewicz
The members worked on the Statute of the Association and all the formal aspects of its founding.
The Association was registered by the Economic Section of the National Court Register.
Ul. Wołoska 137
tel. +4822 508 1330, tel./fax +4822 508 2457
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Many members of the Association took part in a lecture session on carcinoid treatment methods in Falenty, Warsaw . The lectures covered surgical, pharmacological and psychological aspects of treatment. Dr Jarosław Ćwikła described the radioisotope therapy.
In the Warsaw Hyatt hotel an educational session on neuroendocrine tumours was held for the members of the Association and media. Prof. B. Kos-Kudła and Dr Jarosław Ćwikła presented general information concerning carcinoid cancer and its therapy. Afterwards a press conference was organized during which Dr Ćwikła and Dr Hilgier were interviewed by two Polish daily papers. In the afternoon some members of the Association participated in the 1st Polish National Conference on neuroendocrine tumours where many outstanding specialists from Poland and other European countries gave interesting scientific presentations followed by discussion covering diagnosis, differentiation and treatment of the tumours.
The Association sent a letter to the Polish government directed to Deputy ¦piewak concerning difficulties in treating carcinoid cancer in Poland .
A meeting of the Association was held with participation of the Director of the Warsaw Hospital MSWiA and numerous doctors of various disciplines who are supposed to work as a team providing comprehensive therapy and examination of carcinoid patients.
The Association sent a letter to the Polish Ministry of Health on the refund of the medicines. Copies were sent to the National Health Fund and the Ombudsman.
The National Health Fund informed that the way of reviewing the applications to launch new drug programs was questioned by the Minister of Health and the analysis of the applications was suspended.
The Minister of Health informed about contracts with the National Health Fund and about the submission of the application to include Somatulin into the reimbursement list.
Letter of the Director of the Drug Policy Department at the Ministry of Health discussing the National Cancer Prevention Program. No mention of carcinoid treatment.
The Association got in contact with a similar patient organization GIST. Its president Stanisław Kulisz shared his experience in the development of the GIST Association and its campaign for treatment.
Meeting of the members of the Association during which Dr Ćwikła and Dr Hilgier summarised the achievements of the Association and its future plans. The goals include further petitioning of the government and promotion of knowledge about the disease.
The Association got in touch with American Carcinoid Cancer Foundation.
Yet another letter to the Director of the Health Policy Department at the Ministry of Health concerning difficulties in obtaining funds for carcinoid treatment. Copies were sent to the National Health Fund and the Ombudsman.