Association 'Women without Osteoporosis'
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Last updated on 05/09/2003
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Escape from Osteoporosis - National Osteoporosis Campaign starts in Bulgaria for WOD 2005
Sofia, October 13, 2005
The Ministry of Health presented the developed National Program for Limitation of Osteoporosis accenting on the prophylaxis of the disease
“Invest in your bones – move it lose it” - that is the message of the World Osteoporosis Day (October 20) announced by the International Osteoporosis Foundation - IOF. Bulgaria takes part in the initiative with the National Campaign “Escape from osteoporosis”.
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The IOF-Lilly Policy Grant winning project develops into a national awareness campaign for women
An awared winning project (IOF-Lilly grant during the World Wide Conference of Osteoporosis Patient Societies in Istanbul in 2003) was successfully carried out in 2004. Women from 10 regions of the country born in 1954 were notified by letter about the risks of progress of osteoporosis. This campaign is now being extended into a nationwide campaign to promote early detection of the disease in women around the age of 50. In July this year similar letters will be sent to women born in 1955 from the town of Plovdiv and the surrounding region. Plovdiv is the second most populated town in Bulgaria and the total number of women of 50 amounts to 5,567.
The project is fulfilled by the Program 2005 of the BULGARIAN FUND OF WOMEN after competition being won from Association “Women without Osteoporosis” with the Plovdiv Municipality as partner and with cooperation of the Central Administration “Citizen registration and administrative service”. The aim is that the women aged 50 to be timely informed about the risk period for progress of osteoporosis they enter, which is avoidable, if the reduced bone density has been diagnosed in time and steps to prophylaxis and treatment are taken. For this purpose, at the foyer of Plovdiv Municipality has been arranged an informative corner, where everyone can fill in the test and obtain the necessary information. Such corner operates also at two medical institutions in the town – at First Diagnostic & Consulting Center and at MBAL “St. Mina”.
The results expected from the realization of the project were presented at a press conference in Plovdiv Municipality on July 12, 11:00 a.m., with the participation of Dr. med. Rada Boyadjieva, Sector “Healthcare”, Mr. Bojko Dimov from the Office “Citizen registration and administrative service” – Plovdiv, Ms Kalinka Slivkova – coordinator of Program 2005 of Bulgarian Fund of Women, Dr. med. Valeria Slavova – chairwoman of Association “Women without Osteoporosis” - branch Plovdiv and Dr. med. Valentin Gorchev from the MBAL “St. Mina”.
BULGARIAN GOVERNMENT REINSTATES THE TREATMENT OF OSTEOPOROSIS BEFORE FRACTURE FOLLOWING PROTESTS BY THE NON-GOVERNMENTAL SECTOR
According to Regulation 38 of the Ministry of Health, published at the end of last year, the Health-Insurance Fund in Bulgaria would pay the medication for treatment of osteoporosis only after pathologic fracture (code I80). This decision was followed by a sharp reaction on the part of the non-governmental organizations in the country, supported by health specialists and broadly reflected in the media.
The meetings and discussions carried out by the Association “Women without Osteoporosis” with the policy-makers in the Ministry of Health initiated a fruitful dialogue. As a result, the Association provided the data collected from screening examinations of bone density within the framework of its three national projects: “One minute for health – health for all life”, “Early notice to women at 50 about the risk of osteoporosis” (a project which won an IOF grant at at the World Wide Conference of Osteoporosis Patient Societies in Istanbul, 2003) and “Osteoporosis at the working place” (inspired by the IOF report of the same name). These data give information on the still missing statistics for osteoporosis in Bulgaria, enabling to estimate the number of people with reduced bone density but without fractures, which are subject to treatment according to the standards of WHO. The results submitted have been commented in a letter to the Ministry of Health and before the media by Prof.Dr. Lidia Koeva – expert of the Association “Women without Osteoporosis”.
After the campaign was successfully carried out and a useful dialogue established, the government changed the Regulation 38 of the Ministry of Health. Beginning February 1, 2005, osteoporois will again be included in the list of diseases for which the Health-Insurance Fund will pay, in part, for medication to treat osteoporosis even without pathologic fracture (as defined by the international code I 81).
In a letter to the Association “Women without Osteoporosis” signed by Dr. Petko Salchev, Deputy Minister, states: “The Ministry of Health made a change in the Regulation 38/16.11.04 and foresees inclusion of the diagnosis “Osteoporosis without pathologic fractures”. Thank you for the good form and the joint efforts for optimal solution of the patient’s problems”.
Bulgarian government overlooks requirements of European Union for measures against osteoporosis - before the first fracture. Response of non-governmental organizations causes some change, but insufficient.
With the approval of Regulations Nr.38 and Nr.39 from Ministry of Health, Bulgaria actually overlooked the requirements of EU outlined in the report of experts’ group to the European Commission titled “Osteoporosis in EU – call for action” /2000/. There is said that “…the measures against osteoporosis should be undertaken before the first fracture”.
According to the Regulations Nr. 38 and Nr.39 of Ministry of Health published on December 3, 2004, the partial and full payment of the medicines for osteoporosis as well the dispensarization of this disease since January 1, 2005, will be done only after “pathological osteoporosis fracture available”. From the regulations is fallen away the former existed disease “Osteoporosis” remaining only “Osteoporosis with pathological fractures” to the International Code Ì80.
Both the regulations contradict the diagnostic criteria of WHO as well, according to which availability of osteoporosis is estimated on the basis of data for the bone density. From the next year on, WHO foresees to introduce also the clinical analyses as additional criterion. By the approval of Regulations Nr.38 and Nr.39 Ñ, in Bulgaria will be cured not the reason for osteoporosis – the reduced bone density, but its consequence – the fracture.
It Europe, in 2003, the total direct costs for treatment of hip fractures in the first year after the fracture amounted to EUR 17,4 MLD, and taking into account all the fractures - EUR 25 MLD. One of each 3 women and one of each 5 men over 50 has an osteoporosis fracture. If this statistics refers only to Bulgarians born in 1955, it is obtained that from the next year on we have to treat about 30 000 people with medicines to value over BGL 33 mill. Taking into account also the population over 50, this amount jumps.
The evidence available shows that it is reasonable to be foreseen means for equipments for estimation of the fracture risk, instead the occurred fractures to be treated. The examination of the bone density is the best way to determine fracture risk and the double-energy X-ray absorption (DXA) is acknowledged as the gold standard for measurement of this parameter. The norm for the so-called “osteometers for whole body” is 8 pcs. per one million population, while the technics in our country numbers just about 7 apparatuses available only in Sofia and Plovdiv.
It is evaluated that the screening of women over 65 combined with examination of bone density and clinical analyses can prevent 23% of all fractures in women for a 10-year period of time in case 25% of the subjects to treatment embraced. Bulgaria declines this resource accepting the osteoporosis fracture as criterion for treatment of this heavy and disabling disease. The rise of a fracture alone leads to the so-called “cascade effect” – increase of the fractures, if no treatment before the fracture undertaken. The rise of vertebral fracture, for example, increases the risk for new fractures from 2 to 5 times during the next year.
The main problem, not taken into account by the approval of Regulations Nr.38 and Nr.39 with respect to the criteria for treatment and dispensarization of the osteoporosis patients, is that a great part of the vertebral fractures (which are especially painful, disabling and drastically worsening the quality of life) become non-diagnosticated. It is established, in clinical investigations, that about 2 of each 3 vertebral fractures remain unnoticed by the physicians. Bearing in mind the insufficient diagnostic resources in Bulgaria, this statistics is probably much more disturbing. About 20-25% of women over 50 have already one or more vertebral fractures. An adequate medical treatment could prevent 50 to 60% of the following vertebral fractures so that the early diagnostics and treatment are of exclusive importance. Once the woman has endured the first vertebral fracture, a fivefold risk increase for new vertebral fracture exists, only within the frames of one year.
The hip fractures as result of osteoporosis have the heaviest consequences. In a year after having hip fracture, every 1 of each 4 patients dies, one of each 4 is not able to walk and 2 of each 4 are moving but very limitedly.
Association “Women without Osteoporosis” as patient non-governmental society and full member of the International Osteoporosis Foundation, for its 5-year existence, has obtained the right of public auditor in the field of osteoporosis in our country. The Association has at disposal an active membership mass and high-qualified expert, and contributes not only to increase of the public susceptibility about the problem osteoporosis, but provides also data to the responsible institutions outlining the volume of the disease propagation in the country. From this position, Association “Women without Osteoporosis” invokes the Ministry of Health to reconsider the Regulations Nr. 38 and Nr. 39 in respect with the criteria for treatment and dispensarization of osteoporosis conforming them to the contemporary requirements for treatment of osteoporosis before the rise of fractures.
Dec. 6, 2004
In response of the protests on the part of the non-governmental sector, the Ministry of Health published on December 8, 2004, supplements to Regulation 38 referring to full or partial payment of the medicines for home treatment, as follows:
“After a certain age, the progress of osteoporosis is connected with natural processes of ageing of the organism. The prophylaxis of the disease and the delay of these processes is connected not only and not mainly with medicine treatment, but with reduction of the risk factors for the disease (limited consumption of milk and milk products, smoking, etc.). The medicine treatment is strictly manifested when heavy morbid changes are available, such as bone fractures. Namely for this reason, the Ministry of Health has foreseen in Regulation 38 the treatment of this patient contingent, for which the Health-Insurance Fund will pay partially or completely the foreseen medicinal products.”
Published: December 8, 2004 in: www.government.mh.bg
These changes are not conformed to the contemporary formulations for treatment of the disease and doom the patients to sufferings, worsened quality of life loading with an additional financial burden the health insurance and the budgets of the families having osteoporosis patients.
The Association “Women without Osteoporosis” insists that to the patients of osteoporosis must be applied the modern and acknowledged in Europe standards for treatment of the disease.
Calcium breakfast for journalists
As 20 October 2004 was the day for prevention osteporosis in men - 'Women without Osteoporosis' invited the Chairman of the Health Commision in Bulgarian Parliament - d-r Atanas Shterev to be the host of its CALCIUM BREAKFAST FOR JOURNALISTS.
After the speeches, the Chairman tasted Bulgarian yogurt
Bulgaria: Hot News on the Eve of World Osteoporosis Day 2004
On October 13, Wednesday, the Association “Women without Osteoporosis” (WWO) was invited by the Ministry of Health (MH) to participate in a press conference on the occasion of WOD’04. The event was included in the schedule of the regular press conferences of the Ministry, which are carried out every Wednesday at eleven o’clock and are the main source of health information in media space of the country.
Press conference in the Ministry of Health. From left to the right: Dr. Masha Gavrailova, MD – head of department “Prophylaxis of the diseases and health promotion” at MH, Assoc. Prof. Philip Kumanov – endocrinologist, expert to the organized by the Association Public Center “Life without Osteoporosis” and Ms Maya Gesheva – executive director of WWO
The subject of the press conference was “The World ‘Fight against Osteoporosis’ Day”. Participants: Dr. Masha Gavrailova, MD – head of the department “Prophylaxis of diseases and health promotion” at MH, Assoc. Prof. Philip Kumanov – endocrinologist, expert to the organized by the Association Public Center “Life without Osteoporosis” and Ms Maya Gesheva – executive director of WWO. Submitted were the first results on the Project “Osteoporosis at the working place”, based on the IOF report of 2002 and realized by MH jointly with the WWO. Reported were data from the already complete Project “Early notice of women at 50 for the risk of osteoporosis”, with which the WWO won the “IOF Lilly Osteoporosis Policy Grant” at the World Wide Conference of Osteoporosis Patient Societies- Istanbul’03. The theme “Osteoporosis in Men” was presented by Assoc. Prof. Philip Kumanov, directed to the care for the bone health in men. The event received a wide media attention, including direct inclusion on the program “Horizon” of BNR.
At the same time – on October 13 at eleven o’clock - the Association WWO was invited as guest to the regular press conference of Hygiene Epidemiological Inspectorate (HEI) in the town of Plovdiv– the second largest city in Bulgaria. The World Day of fight against osteoporosis was presented by Ms Engiljan, MD – director of HEI-Plovdiv, and details about its organization in the town were reported by Dr. Simeon Pavlov, MD – head of section “Prophylaxis of the diseases and health promotion” at HEI. Dr. Ivan Goranov, MD – rheumatologist and Ms Aya Lilova – deputy chairwoman of WWO also took part in the press conference. Ms Lilova informed the media that WWO – in response to the call of the health authorities and representatives of the Parliament – officially undertakes the engagement for accurate payment of the health installments on the part of the members of WWO (not long ago, the Health-Insurance Fund announced a lack of means for reimbursement of the medicines because of problem with the payment of the health installments).
Poster “Symbol”, issued in Bulgarian was distributed in Sofia and another 28 towns in Bulgaria
In connection with WOD’04, in the beginning of October, the Association published in Bulgarian the posters of IOF “Annual 50+guy check up” and “Poster symbol”, translated in Bulgarian the One-Minute video clip of Prof. Ego Seaman and issued a special copy of newspaper “Osteoporosis” devoted to osteoporosis in men. These materials were sent to 24 towns in the country supporting the organization and preparation of WOD-04.
Minutes before the beginning “Meet the expert” session during the Third National Exhibition “Life without osteoporosis”
A main event in connection with noting WOD’04 in the country is the Third National Exhibition of foods, food additives, auxiliary and measurement means for prophylaxis and treatment of osteoporosis under the title “Life without osteoporosis”, which is traditionally organized by WWO in the National Center of Hygiene, Medical Ecology and Nutrition. The present exhibition is under the patronage of MH organized simultaneously in the towns of Sofia, Plovdiv, Varna, Stara Zagora and Shoumen. The visitors can be acquainted there with different products for healthy nutrition and check their bone density. At the official launch in Sofia were present many citizens, health specialists, students. The event was reflected by the central media: program “Horizon” of BNR made a direct inclusion, BTA transmitted also information about. WWO issued a poster and catalogue of the exhibition.
At the official launch an honorary diploma was handed to the journalist of BNR Ms Plamena Bachijska for the tolerant attitude in her transmissions to the patients of osteoporosis. She was announced as “Ambassador of good will” at the Public Center “Life without osteoporosis”.
Another exhibition – “The Movement against osteoporosis worldwide”, is going along with the Third National Exhibition “Life without osteoporosis”, presenting the activities of IOF societies on the occasion of WOD. During its official launch, on October 18, in the National Center of Hygiene, Medical Ecology and Nutrition, it was characterized by the visitors as an “unique kaleidoscope of the civil initiative for limitation of osteoporosis worldwide”. The exhibition is devoted to WOD’04 and will be opened till October 23, 2004.
In connection with the official noting of WOD’04 the Campaign“Life without osteoporosis” of the Public Center started as well. It is organized by WWO for determination of the personal risk for osteoporosis in men and screening of the bone density.
During the exhibition “Life without osteoporosis” (October 18-23) are offered special reductions for examination of the bone density to the men-visitors of the exhibition.
On the eve of WOD’04 was noted the 5th anniversary of the newspaper “Osteoporosis” – monthly manual for patients, where the events in the field of osteoporosis and information about the activities of IOF are published. The newspaper is followed by a series of specialists on osteoporosis in the country.
Wait for the next news about noting WOD’04 in the towns of Plovdiv, Varna, Stara Zagora and Shoumen.
The One-Minute Test of IOF was presented in a direct transmission on Bulgarian National Radio
Directly on air in program “Horizon” of Bulgarian National Radio – the most listened information program in Bulgaria – was presented The One-Minute Test of IOF from Dr. Masha Gavrailova, Head of Department “Prophylaxis of diseases and promotion of health” at the Ministry of Health.
Two hours and a half in the first hours of September 24, 2004, the listeners of “Night Horizon” were acquainted with osteoporosis and the ways for its prevention. The journalist Plamena Bachijska leading the transmission presented the theme in a popular and effective way, concerning very skillfully all the important moments about – from the prophylaxis by correct nutrition and sufficient physical activity to the possibilities for treatment and diagnostics. She pointed that Bulgaria is still very far from the necessary 8 DXA-devices per 1 million populations. Interlocutors in the studio of “Night Horizon” were Dr. Masha Gavrailova from the Ministry of Health and Dr. Anna Liksova – rheumatologist, expert to Association “Women without Osteoporosis”. Took part also Ms Aya Lilova, Deputy Chairwoman of Association “Women without Osteoporosis”, and Ms Olga Manolova – coordinator to the Association, who was included directly from the town of Shoumen. There was carrying out the Campaign for early information of the women at 50 about osteoporosis risks – part of the nominated by IOF and “Eli Lilly” (Istanbul’2003) project of Association “Women without Osteoporosis”.
The concrete reason for the transmission was the “Route of Health” organized by the Association “Women without Osteoporosis” on September 25, 2004, in the Hunting Park near Sofia - part of the global initiative “Move for Health” of WHO. As a result, the initiative of the Association was visited by many new followers of the active motion and transformed into a peculiar call for active ageing through motion and physical activity on the eve of October 1 – the Day of Aged People. The listeners of “Night Horizon” had the possibility also to be acquainted with the great numbers of events planned by the Association during October and devoted to the World Osteoporosis Day’ 2004.
January – March’2004
At a great public interest caused from the events in connection with WOD’2003, the screening examinations of bone density countrywide went on. The actions were preliminary announced by active participation of the local authorities, health services and media. Association “Women without Osteoporosis” organized reception-rooms where the citizens filled in the One-Minute Test for the personal risk of osteoporosis. An ultrasound densitometer was at disposal for examination of the bone density. The needy ones were directed for medical advice to the specialized consulting rooms at the settlement. The public efforts of Association “Women without Osteoporosis” also in this action received the strong support of the medical specialists all over the country. 1/3 of all the 40 private ultrasound devices in the country were provided for this screening measurement. The medical specialists left their stationary diagnostic-consulting centers and together with Association “Women without Osteoporosis” traveled all over hundreds kilometers in order to help a lot of people to establish their risk of osteoporosis and put the beginning of a timely prophylaxis and treatment. Moreover, within the framework of the campaign they were making examinations and measurements of bone density at preferential prices, which was very important for the poor Bulgarian with income of 100 EUR per month.
The database obtained will be given for statistical processing to the specialists of the National Center of Hygiene, Medical Ecology and Nutrition, and after that – to the health authorities and the Health-Insurance Fund. /At the present time, the reimbursement of the treatment for the disease in Bulgaria is based on the data of the ultrasound densitometers/.
Within the framework of the cycle public meetings – discussions, under the motto “The management of osteoporosis is in your hands”, at the Sofia branch of the Association was carried out a patient’s meeting with the lecture “Vitamins and nutrition”. Lecturer was Dr. Med. Nikolay Damianov. Lottery with awards provided the sponsor of the event - “Kendy” Ltd.
The office of the Center “First aid for the bones” continues the started previous year work with the patients on treatment with Fosamax providing information materials, direction to consultation with specialists or examination of bone density. The most interesting themes and common questions to the Center are published in the newspaper “Osteoporosis”.
Since the beginning of 2004 began the preparation for fulfillment of the project “Early advice the women at 50 about the risk of osteoporosis”, for which Association “Women without Osteoporosis” won Lilly-Grant during WWC’2003 in Istanbul. For this purpose, some working meetings with the management of the Central Direction “Citizen’s registration” were carried out (they agreed to give us the addresses of women being at 50). In connection with the recently approved “Law for protection of personal data” was involved sub-agent from the system of organizations authorized for work with the citizen’s personal data.
Aiming at extension the project’s range in more regions of the country, it was created an organization of work providing additional means by self-financing.
It is prepared, coordinated with the Bulgarian representation of “Ely Lilly” and printed the text of the brochure for the women at 50, as well as the envelopes with a special stamp.
On the grounds of IOF report “Osteoporosis at the working place” Association “Women without Osteoporosis” developed national project directed to advice of workers and employers about the damages, which osteoporosis causes on the working place and to collecting of data for assessment of the financial burden from this problem. In February, this project was submitted to the Ministry of Health.
April – July ’2004
The project “Osteoporosis at the working place” was officially submitted at the national meeting of departments “Prophylaxis of diseases and health promotion” from the regional structure of the Ministry of Health including 28 districts of the country, which was carried out on March 31 and April 1 in the village Chiflik. Partners for its realization are Ministry of Health with its regional HEIs and Association “Women without Osteoporosis”. Head of the project is Prof. Lidia Koeva, D.M.S., head of the Clinic for endocrinology and metabolite diseases at the University Hospital – Varna. She held a report on the subject containing her data from some enterprises of the region of Varna. Technical details on the project delivered the coordinator on the part of Association “Women without Osteoporosis” Dr. Med. Vania Stoenelova – rheumatologist leading MC “Health” in the town of Vidin. By means of media, an open letter to the employers was spread (its text separately published).
Mrs. Olga Manolova – coordinator of Association “Women without Osteoporosis” and Mrs. Vania Stoenelova, Dr.Med. – coordinator of the program “Osteoporosis at the working place”
Started the fulfillment of the project “Early advice the women at 50 about the risk of osteoporosis”. Simultaneously with sending letters, by support from the local authority, Association “Women without Osteoporosis” organized temporary reception-rooms according to the model accepted in the campaign WOD’2003. The women there can fill-in the One-Minute Test and examine their bone density. The interest to these reception-rooms speaks that the approach to qualified help for prophylaxis and treatment of osteoporosis is still difficult. From March to June, the project covered the regions of Vidin, Montana, Gabrovo, Lovech, Pleven, Vratza, Targovishte and Razgrad. We met great interest on the part of media and publics everywhere and a strong support from the local authority in the face of the town councils and the specialists of sections “Health” at the municipalities.
The submitted in the beginning of the year project of the Center “First aid for the bones” aiming at covering the more remote regions of the country with information materials and osteometric measurements by use of the devices of MSD Co. imported last year, as well as provision of specialists on osteoporosis where they are missing, did not receive the approval from the Bulgarian office of the company. That’s why, since the mid of April the office was closed. The Center continues its work on information service and consultation publishing in newspaper “Osteoporosis”, but at present without direct work with people. Undoubtedly, this is a step back and insufficient appreciation of the capacity of the patient societies in cooperation with the specialists on osteoporosis.
In May, a meeting with the Bulgarian office of PR-agency “Weber Shanwick” in the face of its leader Rositza Stefanova was carried out and plans for mutual work outlined.
Within the framework of the cycle public meetings – discussions “The management of osteoporosis is in your hands” was carried out patient’s meeting on theme “Osteoporosis and nutrition” with lecturer Lyudmila Ivanova, Assoc. Prof., head of laboratory “Nutrition” at the National Center of Hygiene, Medical Ecology and Nutrition. The theme caused lively discussions and many questions about how by nutrition to be supported the treatment and prophylaxis of osteoporosis under conditions of high prices of medicines and low reimbursement. Interest provoked also the second theme of the meeting – presentation of the products of Himalaya Co. made by Dr. Med. Marijan Ivanov, homoeopathist and phytotherapeutist.
The preparation of the project for National Program on osteoporosis is in its final stage. As member of the working team at Ministry of Health, the Association “Women without Osteoporosis” is active participator in this preparation. In the part of the project “Propagation of osteoporosis in Bulgaria” it participates with database for propagation of the risk factors among the population of the country, which includes 9 000 people. In accordance with the report “Osteoporosis in EU: Plan for action” it developed the part “Public support of the National Program”. By its initiative IOF provided the participation of the leader of the working group Prof. Michail Protich in the meeting of the European Parliament during November’04 in Brussels. Association “Women without Osteoporosis” at its own forces and expenses translated the report “Osteoporosis in EU: Plan for action” and submitted it to the Ministry of Health. Based on this report was developed a new variant of the project for National Program, which found broad support from the scientific medical societies on rheumatology, orthopedics and radiology and the Bulgarian association of sterility and reproductive health. It is forthcoming in July to take place the last meeting of the working team and the project to be submitted for approval.
In May, Bulgaria joined to the announced by WHO call for active longevity organizing a Week of the motion for health – traditional joint initiative of Association “Women without Osteoporosis” and the Capital HEI. In the start of the initiative in the Boris’s Garden took part members and sympathizers of the Association, media and companies offering healthy products. So was put the beginning of the so-called “Routes of health”, which gather together people of each age for a pleasant walk in the nature on the green paths of the mountain or the city parks. Responded also participants in the country: we received information from the town of Shoumen about Routes of Health including quite various participators – from children of kindergartens and schools to the pensioners. The second Route of Health was carried out on June 12 on the picturesque panoramic path between the villages Jeleznitza and Bistritza at the foot of the Vitosha Mountain. The participants were greeted from the mayor of the village of Jeleznitza Mrs. Selimka Stojanova. The walk completed with songs, gayety and very good spirits as a result of the motion in the nature. The supporting companies offering healthy additives and food on the market provided awards for the most active participants.
Despite the active actions taken by Association “Women without Osteoporosis” against reduction of the reimbursement for treatment of osteoporosis from 50 to 25%, this question remains still unsolved. According to our investigations, a significant part of patients, which have applied active medicamentous treatment till the end of 2003, after the unfavourable decision of the Health-Insurance Fund are already not under treatment. On our tentative assessment, at the present time only 5000 patients take treatments. According to data of Dr. Med. Pl.Popivanov and Dr. Med. M.Boyanov /“Epidemiology of osteoporosis in Bulgaria”, Journal “Osteoporosis” ¹ 1, 2001/ the women with risk of osteoporosis are 317 483 and these with risk of osteopenia - 504 558. Total 820 000 Bulgarian women have enhanced risk of osteoporosis fractures. That’s why, on July 2004, Association “Women without Osteoporosis” sent a new letter to Dr. Med. Ivan Bukarev, Director of the Health-Insurance Fund, demanding the recovery of 50% reimbursement for treatment of osteoporosis and full reimbursement for diagnostics of seriously-ill patients /having one or more fractures/. We have attached to the letter the following documents: European Plan for Action in the field of osteoporosis /November 2003, Brussels/; Project for National Program of Osteoporosis / July 2004/; Investigation of Association “Women without Osteoporosis” about the propagation of the risk factors for osteoporosis in the country /July 2004/
Ms Mel Read, MEP. - took the lead of the
First Bulgarian Women's Forum Against Osteoporosis
The final highlight of the WOD campaign in Bulgaria was the First Bulgarian Women's Forum Against Osteoporosis and the visit of Ms. Mel Read MEP...
Moments from First Bulgarian Women’s Forum against Osteoporosis: Mrs. Mel Read – M.E.P.(left) and representatives of International Women’s club of Sofia
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Osteoporosis awareness campaign in Bulgaria
devoted to World Osteoporosis Day 2003
Bearing in mind the tremendous public interest shown for World Osteoporosis Day during previous years, the Association "Women without Osteoporosis" announced October 2003 as the month dedicated to the fight against osteoporosis. It was launched in the Black Sea town of Varna on October 1 with a patient meeting - lecture organized by Association "Women without Osteoporosis" and Hygiene-Epidemiological Inspectorate (HEI) of the town, with the kind hospitality of the Varna Municipality. The big plenary hall of the Municipality was over-filled from the local public assembled to hear the welcoming speech of Dr. Zdravko Markov, Head of Direction "Health and Social Activities" at Varna Municipality, the lecture of the honourable Prof. Lidia Koeva, as well as the presentation of the Association made from its deputy-chairwoman Ms Tzanka Misheva, journalist of the Bulgarian National Radio. The meeting marked the start of the local section of the Association, which drew enormous interest on the part of the local media and many first-time members enrolled on the spot!
The Campaign was carried out in collaboration with the Hygiene-Epidemiological Inspectorates in more than 20 regions of the country, distributing by them the translated reports of IOF "Osteoporosis at working place" and "Life-style quality". In particular,transmission of the video clip "The Train" was offered by the local TV-channels in the whole country. Simultaneously, the "One-minute Test" for assessment of the osteoporosis risk was distributed.
The background of the Campaign were the osteometric examinations carried out in over 10 regions. For this purpose, the Association "Women without Osteoporosis" involved the local specialists working with osteometers and where they were missing - organized teams coming from other towns. The measurements were performed at the local HEIs achieving in this way excellent information coverage about the Campaign and an orderly organization.
As its well known, the osteometric examinations in Bulgaria have no reimbursement. For this reason, the Campaign was organized throughoutthe country at preferential rates (considerably lower than the common ones) . In about three weeks only, several thousands examinations have been made. And because of the numerous orders, the Campaign continues in November and December.
In the city of Sofia, from October 20 to October 24, an exhibition of foods, additives and measurement instruments for prevention and treatment of osteoporosis under the motto "Quality of life" was carried out. It was visited by over 2000 people. There, the members of the Corporative Council of the Association were represented with own stands – the pharmaceutical companies "Eli Lilly", “Merck, Sharp and Dohme" and “Novartis”, as well as firms-producers of foods and additives – “Schmidt-Í” and “Kendy”. During the exhibition, 8 mobile ultrasound apparatuses were working. At the same time, other devices made the round of women collectives in the Capital – schools, kindergartens, institutes, private firms.
This large program devoted to WOD-2003 was the final stage of the three-year Campaign of the Association "Women without Osteoporosis" called “One minute for health - health for all life". During the latter, in a period of 2 years, the "One-minute Test" for assessment of the risk factors for osteoporosis was distributed in more than 50 000 copies and thousands of people themselves estimated their personal risk of the disease. So, at the end of the Campaign they could examine also their bone density. After processing of the data obtained, they will serve as a stable basis for assessment of the risk factors for osteoporosis - a very important fact for the missing statistics in Bulgaria.
The culmination of the WOD campaign was the visit of Ms Mel Read M.E.P. - founder and Chairwoman of the Group on Osteoporosis at the European Parliament. She arrived in the country at the invitation of the Association "Women without Osteoporosis" and her first meeting was in the Parliament with Prof. Atanas Shterev – Head of the Parliament Health Commission.
The Bulgarian Women’s Forum against Osteoporosis was held at "Sheraton-Balkan" Hotel, Sofia, with participation of prestigious woman's non-governmental organizations like the International Ladies' Club-Sofia to which belong women-diplomats and ambassadors' wives, leading Bulgarian specialists in the fields of osteoporosis, representatives of scientific medical societies, ministries and departments, connected with the spheres of health. There was a strong interest to the event on the part of the journalists from the Capital media. The speech of Ms Mel Read-M.E.P. was very stimulating and met with excitement from the audience. The present elite ladies' public, representing the non-governmental sector, signed a document "Call for action" addressed to the governmental institutions of the country to undertake urgent measures for limitation of osteoporosis before the first fracture. At the end of the event was performed a fashion show of clothes for women with osteoporosis developed by the young designer Ms Veneta Atanassova to order of the Association "Women without Osteoporosis".
Activities during May-September, 2003
THE PROGRAM ‘URGENT AID FOR BONES’ COMPRISED THOUSAND BULGARIANS AFFECTED FROM OSTEOPOROSIS
The starting in February this year joint initiative of Association "Women without Osteoporosis" and the pharmaceutical company “Merck, Sharp & Dohme IDEA Inc.” titled "Urgent aid for bones" comprised a large part of Bulgarians, which effectively treat their disease osteoporosis. The reason for that was the provision of screening osteo-densitometric examinations at a preferential price, as well as the additive discounts in the price of treatment being fact after negotiations with the distributors and the wholesalers. Another important moment of the Program is that periodically and in different regions of the country there are organized public lectures - discussions, where the risks of the disease, the consequences of its progress, the personal and social burdens, as well as the efficient ways for prevention and treatment have been explained. These lectures-discussions constitute the main part of participation of Association "Women without Osteoporosis" in the Program being lead by outstanding specialists: in Sofia City – Dr.med. Plamen Popivanov, in the town of Plovdiv – Dr.med.Maya Nedeva, in the town of Stara Zagora - Dr.med. Stoyanka Vladeva. The good organization, the qualified assistance and the possibility for everyone to discuss his personal experience and problems with medical specialists increase the members and the followers of the Association and convert into an example for good collaboration between patients, medical specialists and a non-governmental organization.
SUBSCRIPTION IN BACKING DECLARATION FOR RIGHTS PROTECTION
OF OSTEOPOROSIS PATIENTS
After the press conference in Bulgarian Telegraph Agency (BTA) on April 15, 2003, where Association "Women without Osteoporosis" presented its Declaration for Rights Protection of Osteoporosis Patients, a subscription backing the Declaration started countrywide. The National Health-Insurance Fund several times updated the positive medicinal list, but there was no increase of the reimbursement of medicaments for treatment of osteoporosis (it remained on the level of 25% since February, 2003). That's why, Association "Women without Osteoporosis" took decision to introduce the collected till mid-June signatures to the Presidency, the Council of Ministers, the Parliamentarian Committee of Health, the National Health-Insurance Fund and the Ministry of Health. The official responses from these institutions received declare their readiness to be protected the rights of osteoporosis patients according to the budget of the National Health-Insurance Fund.
On the eve of WOD, it is forthcoming the introduction of the collected till end-September signatures backing the Declaration for Rights Protection of Osteoporosis Patients to the official institutions, just before the consideration of the new frame agreement about the health insurance.
TV spot draws huge public interest - New World Osteoporosis Day campaign planned.
The TV-spot "The train", was aired widely in Bulgaria in the first two weeks of June and has drawn broad public interest. The campaign will be repeated for World Osteoporosis Day 2003.
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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.
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.
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.
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.
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.
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:firstname.lastname@example.org
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"
WOD’02 in Bulgaria reached thousands of people and showed serious cases of undiagnosed osteoporosis
The Bulgarian association "Women without Osteoporosis" organized a series of events for the occasion of WOD'02, including a press conference, exhibition for the public, and fashion show.
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