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IOF-Lilly Policy Initiative Grants

Summary of Award-Winning Projects in 2003

In September 2003 at the IOF World Wide Conference of Osteoporosis Patient Societies held in Istanbul, five societies were awarded the IOF-Lilly Osteoporosis Policy Initiative Grant for their policy-oriented projects aimed at reducing the burden of osteoporosis in their countries. The projects are described briefly below:

Bulgaria: Association "Women Without Osteoporosis"
"We'll Overcome Osteoporosis Together"

Aya Lilova and collegues
Aya Lilova of "Women without Osteoporosis" Bulgaria, standing with colleagues, holds the award certificate.

The present project is the concluding stage of successful three-year campaign "One Minute for Health – Health of All Life" organized by the Association "Women without Osteoporosis".

There are two main goals. The first is to change public opinion about osteoporosis – which is perceived as a disease that only affects elderly women – and show that it is a serious problem affecting younger women. Concrete statistical data gathered in the earlier part of the project shows that an alarming number of women in their 50s have osteoporosis or osteopenia. These women are economically active, but often do not take care of their health and cannot afford prophylaxis and treatment of osteoporosis. At the same time there is a trend toward a decrease of reimbursement for diagnosis and treatment, with no reimbursement at all for prophylactic care.

The previous statistical investigation will be extended, analyzed and compared to the data gathered for EC countries and other Eastern European countries. The Association will also develop proposals for prevention of the first fracture among women at an active age, and will print, promote and distribute a book which contains the data to parliament, government and Health Insurance Fund ministers. This will support the project's second goal: the organization of a National Public Conference which will bring together representatives of parliament, government officials, and the National Health Insurance Fund. It is hoped that the project will lead to the development of a national program for prevention and reimbursement of diagnosis and treatment of osteoporosis.

Chile: Fundacion Chilena de Osteoporosi
Osteoporosis must be included in Chile's health reform

Dr. Marina Arriagada and Dr. Roberto Arinoviche

Dr. Marina Arriagada of the Fundacion Chilena de Osteoporosis and Dr. Roberto Arinoviche of the Fundacion Chilena de Osteoporosis.

Chile is about to undergo the most extensive health reform in its history. Part of the reform will include the "Auge Plan" which guarantees the right to improved and equitable access to treatment for the 56 health problems that have the most impact on the quality of life of Chileans. The plan is expected to meet government approval by the end of 2003.

Although osteoporosis is a significant and growing disease in Chile, it is not on the list of priority diseases. This is despite the fact that a recent census shows that Chile's population is ageing and that a growing number of households (33%)are now led by women – the gender most affected by osteoporosis. Even previous government-sponsored studies have shown the growing impact of musculoskeletal diseases. A 1995 government study listed musculoskeletal diseases, including osteoporosis, as 13th in hospital morbidity, an increase of over 76% since 1975. Also, musculoskeletal diseases were listed as the tenth most significant diseases affecting quality of life in the population.

So why is osteoporosis being omitted from the Auge Plan? There is a lack of information and knowledge about osteoporosis among public health authorities and no awareness of the benefits that would be gained in prevention of fractures in the ageing population. Doctors, especially regional health professionals, have a low level of awareness, and even less access to diagnostic and therapeutic possibilities. The public too lacks awareness and, without this awareness, does not have the necessary tools to demand their rights as patients.

The primary target of the Fundacion's project is to correct this situation and to lobby the public authorities to ensure that osteoporosis is included within the list of priority diseases. A full-scale media, information and education campaign will be carried out. This includes lectures and seminars on osteoporosis which would raise consciousness of osteoporosis not only among doctors, but also among the principal health-care decision makers in the country. A TV commercial will be produced and aired with the help of McCann Erickson in order to make public opinion sensitive to osteoporosis. This will be supported by widely-circulated information pamphlets. The press campaign may also include a press workshop to teach journalists about osteoporosis. The society is also carrying out bone densitometries at a rate of ca. 30 per day in order to gather statistics about the prevalence of osteoporosis.

If this campaign is successful in getting osteoporosis included in the "Auge Plan" it will be of immense importance – not just to those who are now suffering from osteoporosis and who will, for the first time, have access to therapy. With the general improvement in availability of diagnostic technology and preventive measures, thousands of people can be diagnosed early and thereby avoid fractures. And, if the public health-care system leads, the private health care system will be compelled to follow suit.

Lebanon: Lebanese Osteoporosis Prevention Society
Fracture Registry in Lebanon

Dr. Ghassan Maalouf, Helene Andrea and Layal Shoucair
From left: Dr. Ghassan Maalouf, Helene Andrea, and Layal Shoucair of the Lebanese Osteoporosis Prevention Society.

A data bank for the registry of fractures in Lebanon will collect information on hip and vertebral fractures occurring across the country. It will be the first of its kind in Lebanon and in the Arab region. LOPS will prepare computer software necessary for the registration of hip and vertebral factures and will work in conjunction with the WHO and Ministry of Health over a one-year implementation phase. With the assistance of the Lebanese Ministry of Health and the World Health Organization (and the statistics acquired from previous LOPS studies) LOPS would then be able to evaluate the prevalence rate of fractures and collaborate more closely with the Ministry to develop policies on prevention and treatment of osteoporosis.

This new project follows on other achievements made by LOPS since its launch in 1994. Extensive awareness and media campaigns as well as conferences and lectures for health professionals were conducted over the years. These campaigns have awakened public and professional perception of the disease and this, in turn, has led to demands on the authorities to include osteoporosis in public health programs. LOPS achievements include having 85% of the cost of DXA testing reimbursed as well as some medications; insurance companies introducing osteoporosis into their client's policies and referring patients to LOPS and other screening centers for DXA testing; and osteoporosis being made a part of the National Non-Communicable Diseases Program recently launched by the Ministry of Health. In addition, LOPS has established good working relations with the WHO, the Ministry of Health, and the National Council of Scientific Research and has carried out or assisted in many studies to determine, for the first time, the incidence of osteoporosis, hip fractures and national BMD levels.

The national fracture registry will be a further and important step in Lebanon's campaign against osteoporotic fractures.

Mexico: Comité Mexicano para la Prevención de la Osteoporosis A.C. (COMOP)
Bone Health Education in the National Primary School Curriculum

Sondra McQueary, Leonor de Villafranca and Daniel Navid

From left: Sondra McQueary of Eli Lilly, Leonor de Villafranca of the Comite Mexicano para la Prevencion de la Osteoporosis A.C. (COMOP), and IOF CEO Daniel Navid.

COMOP's strategy to prevent the first fracture focuses on educating children about the importance of nutrition, particularly calcium, and exercise. These are the essential factors that help children achieve optimum peak bone mass – primary prevention against osteoporosis later in life. This is especially relevant in Mexico where almost 30% of the population (around 30 million people) is between 12 and 24 years of age. As a secondary benefit of the school education program, awareness of bone health will be raised among teachers, parents and grandparents.

The objectives are to lobby the Health and Education authorities to include Bone Health as a topic in the National Primary School Curriculum and to lobby health authorities for calcium supplementation for children in grades 3-6 (ages 9-11, when they benefit most from calcium) and to have calcium intake assessed in children who go to clinics for growth assessment. This will involve the preparation of a statement indicating the magnitude of osteoporosis in Mexico and the need for primary prevention to help prevent the first fracture. Interviews must be held with key officials in the Ministries, and educational material and practical guidelines for teachers, based on a pilot education program conducted in a private school in 2002, must be developed and presented.

The timing is right. The Ministries of Health and Education have together launched a program called "Healthy schools" which would be an opportunity to include health issues in the national primary school curriculum. The Ministry of Health is currently reviewing the contents of the school books related to health – books which are distributed free of charge to all first to sixth grade children in Mexico.

Poland: Healthy Bone Enthusiasts Society- STENKO
kNOw MORE about OSTEOPOROSIS

Sondra McQueary, Dr. Waldemar Misiorowski, Dr. Iwona Drozdowska-Rusinowicz and Daniel Navid

From left: Sondra McQueary of Eli Lilly, Dr. Waldemar Misiorowski and Dr. Iwona Drozdowska-Rusinowicz of the Healthy Bone Enthusiasts Society (STENKO), IOF CEO Daniel Navid.

In Poland, osteoporosis is generally an unrecognized and underestimated disease.

Yet with a population of 38.5 million and growing life expectancy, it is estimated that approximately 8 million people may be affected by osteoporosis. Data indicates that of 400,000 people diagnosed with osteoporosis, only 100,000 are receiving some form of treatment. Access to bone densitometry is a problem and the tests are reimbursed only to a very limited degree. Only partial coverage for medication, restricted to daily alendronate, limits accessibility to treatment. Patients must pay for their own calcium/vitamin D preparations and for active drugs like once-a-week alendronate, risedronate or raloxifene.

Before other problems can be tackled, the root of the problem – namely lack of awareness – must be solved. Knowledge about osteoporosis among general practitioners is scanty and awareness of the disease among the public is very low. STENKO, a patient society based in Warsaw, will carry out a country-wide osteoporosis education program addressed to family doctors and patients. The aim is to increase people's motivation to look after their bone health and to give solid evidence from research studies about the clinically appropriate and cost-effective use of diagnostic and therapeutic options for the medical community. In this campaign, STENKO will work with the support of the National Centre for Osteoporosis and in cooperation other organizations, including the, the Third Age University, the Polish college of Family Medicine, the Polish Endocrine Society and the Polish Menopause and Andropause Society.

With an increase in osteoporosis awareness, the first step will be taken to effect stronger public pressure upon government policy, insurances and the health care system for better availability and access to bone densitometry and proven therapeutic agents.

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