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Association 'Women without Osteoporosis'

LIFE WITHOUT OSTEOPOROSIS

On December 14, 2002, Association "WOMEN WITHOUT OSTEOPOROSIS" opened its own reception office at the center of Sofia City. For its members and for all needing information, methodical aid and support, an office "Life without osteoporosis" began to work - thanks to the kind hospitality of the First Multiprofile Hospital for Active Treatment. Under the same name was carried out also a patient's meeting in the big hall of the hospital, where the visitors were acquainted with the damages of osteoporosis on the men through the lecture of Assoc.Prof. Philip Kumanov, endocrinologist, author of the book "Climacteric in men?". The event was organized by support of ORGANON Co. and reflected in the capital press. Further, the data exposed became a basis for a series of publications and transmissions in the health rubrics of the press and TV.


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In the beginning of January 2003, in Sofia, the Program "FIRST AID CENTER FOR THE BONES" of Association "WOMEN WITHOUT OSTEOPOROSIS" has been starting. According to this Program, all interested people obtain information on the disease and are directed to consulting room for osteometric examination and medical check up. The Program is supported by the pharmaceutical company “MERCK, SHARP & DOHME IDEA" Inc. The opening of sections of the Center "FIRST AID FOR THE BONES" in other towns of the country is coming.


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In February, 2003, was grounded the
CORPORATE ADVISORY COMMITTEE
of Association "WOMEN WITHOUT OSTEOPOROSIS", whose activity is directed for supporting the performance of the Association's annual program and display of the potential possibilities of the non-government organization in its efforts for limitation of osteoporosis in the civil society. First members - founders of the CORPORATE ADVISORY COMMITTEE - are the representations of the companies “MERCK, SHARP & DOHME IDEA" Inc., “ELI LILLY (SUISSE)” S.A. and “NOVARTIS PHARMA SERVICES” Inc. in Bulgaria. There is interest manifested to the activity of the new Committee on the part of the representatives of the dairying industry and the bottling of mineral water.



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On February 16, the National Health-Insurance Fund published a list of medicines, for which the reimbursement has been reduced from 50% to 25%. On this list are also the medicines for treatment of osteoporosis. After this reduction, the average salary for the country becomes almost equal to the price of the monthly treatment of osteoporosis (additionally weighted from accompanying diseases) , because of which Association "WOMEN WITHOUT OSTEOPOROSIS" spread in media a Declaration for protection of the rights of osteoporosis patients. The Declaration pays attention to the society and the health institutions that the reduction of the reimbursement will lead to termination of the effective treatment of a big part of the patients, which will cause àn increase of the fractures having much higher price for the state in financial and social plan by comparison with the expenses for partial payment of the treatment.


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On March 8, 2003, a patient's meeting of Association "WOMEN WITHOUT OSTEOPOROSIS" was held where the members of the Association received congratulations on the occasion of the Woman's Feast Day, and additionally thorough information about the Program of “Novartis Pharma “ Co. titled "Care for the patient". À lecture read Dr.Med. Rodina Nestorova, rheumatologist àt 25th Diagnostic and Consulting Center in Sofia, and the participators had the possibility to ask their questions and to share their personal experience in the fight against osteoporosis. The organizers, the lecturer and the audience remained very content with the useful hours spent together and the competent and very well-illustrated lecture.


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On April 15, 2003, Association "WOMEN WITHOUT OSTEOPOROSIS" by support of BTA called a press conference, at which held to the journalists alarming data about termination of the effective treatment of osteoporosis among the big part of the patients caused by the reduction of the reimbursement of the medicaments from 50% to 25%. At the press conference spoke Ms Maya Guesheva, executive director of the Association, Dr.Med. Rodina Nestorova, expert at the Association, and Ms Maria Terzieva, patient. The problem was widely reflected in media through interviews and reportages.
A second accent of the press conference, which attracted the attention of the journalists, was the first presentation in Bulgaria of the video clip of IOF "The Train" doubled in Bulgarian. At the moment, the preliminary negotiations are carrying on about its transmission on the national electronic media with the assistance of the representation of “McCann-Erickson Sofia” - the company-maker of the clip.



Association “Women without Osteoporosis”
1618 Sofia, POB 369 Tel. (+359 2) 963 4715
Fax (+359 2) 550 412 E-mail:aia@poshta.net

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DECLARATION

for protection of the rights of osteoporosis
patients on the occasion of the decreased
reimbursement of the medicaments from the
National Health-Insurance Fund (NHIF) -
in force since 16.02.2003




Association "Women without Osteoporosis", as patient society and full member of the International Osteoporosis Foundation (IOF), is greatly worried from the announced from the National Health-Insurance Fund decrease of the partial payment of the main medicaments for treatment of osteoporosis - from 50 to 25%. By this action, the results achieved last year have been compromised. [At 50% decrease of the treatment (whose complete value is about 120-130 levs), many people - men and women with diagnosed osteoporosis - got to effective treatment, because for the first time it fitted to their pocket]. Moreover, the successful attempt of some companies-producers by special social programs to give the patients additional discounts to the recipe with reimbursement from NHIF, was compromised, too. For example, the medicament raloxifen now costs ca. 90 levs (versus 60 levs at the 50% reimbursement before). The patients using salmon calcitonin by the program "Care for the patient" paid about 24 levs per phial, now the price of the medication jumps twice. The costs for treatment with alendronate by newly starting program "First aid for the bones" were 20 levs monthly, now they are over 40 levs, which is beyond the abilities for the patients, most of them very aged people.
The medicaments for hormonal therapy are still non-reimbursed for women over 45, and the men are excluded at all from the list of reimbursed hormonal preparations for treatment of osteoporosis.
The argument that the budget of NHIF is decreased in respect to diseases like osteoporosis will ricochet with more bigger expenses for its budget very soon, because the fractures, which are a direct consequence of the disease, bring a tremendous burden to the health not only in this country, but worldwide. That's why, osteoporosis is defined as socially important disease and already takes the second place by mortality after the cardiovascular diseases displacing the cancerous diseases.
The threatened from osteoporosis in Bulgaria are about 850 000, one or more fractures have 92 000 people and about 4 000 Bulgarians die yearly because of complications after femoral fractures. According to data of our physicians, the treatment of only one femoral fracture costs from 10 000 äî 30 000 levs.
Mrs. Valentina Ninova, from the town of Pleven, is disabled person 1st group as result of osteoporosis and, in a sense, is the face of osteoporosis in our country. Her story is among the ten stories worldwide, presented on the website of IOF illustrating the sufferings from the disease. With her disability pension she can not allow herself even examination of the bone density in order to understand (she and the treating her physicians) what is the effect of the treatment applied - one important stage more of the treatment of osteoporosis, on which NHIF has not taken even minimum steps for reimbursement.
The measures taken on the part of NHIF for decrease of the reimbursement of the basic medicaments for treatment of osteoporosis from 50 to 25% are in full contradiction with the recommendations of the Working Group to the European Council "for taking measures on the part of governments and state institutions for limitation of osteoporosis before the first fracture". As member of IOF, the Bulgarian patient Association "Women without Osteoporosis" has to inform - to its regret - that the achieved successes with the joint efforts of the state, non-governmental and corporate sector in the treatment of "the silent epidemic" are on the way to be compromised – a step, which will not bring positive image of our country in respect to the health service of the population on the way to Europe.
One serious obstacle more for assessment of the actual damages, which the non-treatment of osteoporosis causes on the health in our country, is the lack of official statistics. This makes the picture dim, but does not decrease the social price. Association "Women without Osteoporosis" appeals for the prompt approval of the already prepared working variant of the National Program on Osteoporosis, which will allow to make an objective assessment what is more effective: to treat the disease by acceptable prices or to pay for the consequences - the fractures, which are a suffering for the patient, for his relatives and for the social protection of health.


Board of Directors of Association
"Women without Osteoporosis"

09.05.2003


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