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IOF-Lilly Policy Initiative Grants

Summary of Award-Winning Projects in 2001

Osteoporosis Australia

Judy Stenmark, Donato Agnusdei and Daniel Navid Judy Stenmark of Osteoporosis Australia is presented with the award by Lilly representative (right) Donato Agnusdei and Daniel Navid, IOF CEO (left).

Osteoporosis is fast becoming 'the disease of the Millennium' in Australia. Direct treatment costs are currently estimated at close to 1 billion dollars per year, and despite recent advances, many osteoporosis sufferers remain undiagnosed and untreated. Of the 1.56m women in Australia over the age of 60, 56% have had a fracture, yet only 25% of these have been treated for osteoporosis. As the Australian population ages, the number of osteoporotic fractures is expected to increase dramatically. By 2021, 20% of the population will be over 65.

Osteoporosis Australia proposes addressing this problem by lobbying to establish Osteoporosis as the 7th National Health Priority (NHP) in Australia. The NHP Areas initiative is Australia's response to a WHO global strategy to target diseases and conditions which place a high burden on society, where significant gains might be achieved. Six NHPs have already been identified. Establishing osteoporosis as the 7th will form the basis for all other government policy initiatives, and ultimately result in increased awareness, prevention, treatment and research. Specific elements for the campaign, 'Lobbying For Change', include:

  • Establishment of '1st Fracture' clinics in all teaching hospitals
  • Government review of Medicare rebates for bone density scans, leading to enlarged criteria
  • Government review of drugs available on the Pharmaceutical Benefits Scheme for prevention and treatment of osteoporosis
  • Research initiatives promoted by Osteoporosis Australia and the Australian government
  • An Osteoporosis Summit co-hosted by Osteoporosis Australia and the Australian government

Osteoporosis Society of Canada

Sue Berlove Sue Berlove of the Osteoporosis Society of Canada receives her award from Donato Agnusdei.

Across Canada there is tremendous provincial/territorial variation in the range of osteoporosis drugs available within our universal medical system. Quebec is the only province to have full coverage on all osteoporosis drugs. Many other provinces have criteria so restrictive that an individual either has to fracture first or be a non-responder to etidronate to be prescribed a newer osteoporosis drug. In addition, several provinces experience unacceptable waiting time for DXA's, while one province, Nova Scotia is significantly under resourced in DXA machines.

The Osteoporosis Society of Canada believes that a coordinated advocacy campaign, targeting voters, members, donors, the scientific community and women's groups, can influence decision makers and bring about policy change. The "No Fracture Is Acceptable" campaign, based on the premise that no one should be at risk of fracture due to lack of access to newer proven therapies, was piloted in Ontario in 2000, and resulted in the approval of four new drugs. The next phase of the campaign will target five provinces: British Columbia, Alberta, Ontario, New Brunswick, and Nova Scotia. The goal is to increase the range of available osteoporosis drug therapies and DXA's and to reduce the restrictive criteria for accessing newer therapies by promoting an understanding of osteoporosis and its effects among politicians and health care decision makers. An additional goal is the creation of a network of media trained osteoporosis spokespersons in each province, to carry out the "No Fracture is Acceptable" campaign and serve as a core group for future advocacy efforts. Each campaign will take a three-pronged approach, political, grassroots, and communication/public relations, and all activities will be coordinated with the national office.

Osteoporosis New Zealand

Margaret Austin Margaret Austin of Osteoporosis New Zealand receiving the award.

Though Ministry officials have acknowledged the incidence of osteoporosis in the population and the importance of diagnosis, level of public funding for bone density scans and medication remains limited.

The objective of the proposed campaign, "BoneMaking", is to prompt decision-makers to take action, by showing what can be achieved by a focused project to diagnose and treat osteoporosis in a general practice. As most New Zealand general practitioners belong to Independent Practitioners Associations (IPAs), "Bone Making" will solicit these Associations to apply for the use of funds, provided by the IOF-Lilly Award, to subsidize bone density scans, treatment or both. The subsidies would be available to relatively low-income patients, those requiring more than 12 GP visits per year, and those with demonstrated risk factors associated with osteoporosis. The winning IPA would then report on the findings to Osteoporosis New Zealand. The campaign is planned as a one-year pilot project. Details:

  • A widely advertised call for proposals for the allocation of funds for subsidized bone density scans and/or treatment for the identified group.
  • The establishment of an expert committee, drawn from the Science Advisory committee of Osteoporosis New Zealand, the Independent Practitioners Council, the Royal NZ College of General Practitioners, the Ministry of Health and Pharmac, to consider the proposals and select one.
  • The announcement of the selected proposal, with proposal details.
  • Results collated and published in appropriate journals.
  • Results used to lobby the Minister of Health and the Ministry in the lead up to the 2002 General Election, with the goal of securing a commitment from the political parties for greater public funding for the diagnosis and treatment of osteoporosis.

Association for Prevention of Osteoporosis in Romania (ASPOR)

Irene Nagy Irene Nagy of the Association for Prevention of Osteoporosis in Romania accepting the IOF-Lilly Policy Initiative Award

Though Romania supports the diagnosis and treatment of osteoporosis, access to measurement devices and drugs remains severely limited. There are very few ultrasound densitometers in Romania, and access to DEXA is even more restricted. Funds are also limited. Practitioners are given a very small budget covering all prescribed drugs, which often results in a reluctance to prescribe expensive antireorbtive drugs, if this means that they can't treat other diseases that are perceived as more serious. Most patients also have very little money. The medium income in Romania is about 100 USD, with pensions significantly lower, and it is difficult to convince a patient to spend 10-30% of her pension for antiresorbtiv drugs for a period of 1-3 years. This all too often results in inadequate treatment.

ASPOR's "Care for Your Bones" is a 5-year campaign that will address these problems through information gathering, education, and advocacy. Primary goals are 90% reimbursement for antiresorbtiv drugs for a period of at least 1 year, a medical community willing to prescribe these drugs for at least 1 year in well-justified cases, and a patient community willing to commit to treatment for 1-3 years. Details:

  • Measure DMO in different regions, using ASPOR's portable ultrasound densitometer, while at the same time explaining results, prevention and treatment options. All participants will also complete a questionnaire.
  • Prepare a report from this data, highlighting the cost effectiveness of preventive antiresorbtiv treatment.
  • Use this report to lobby the National and Regional Health Assurance and the Ministry of Health and Family to increase the reimbursement of antiresorbtiv drugs to 90% for one year, in the case of justified, well documented cases of osteoporosis.
  • Organize "Round Table" discussions in 8 regions, under the leadership of specialists from the Medical University, and with the participation of family doctors, specialists interested in osteoporosis, and delegates from the Regional Health Assurance Offices. ASPOR hopes these "Round Tables" will convince participants of the need to maintain antiresorbtiv treatment for at least one year, and will foster mutual trust and collaboration.
  • Explain via ASPOR's quarterly newsletter the importance of the duration of antiresorbtive treatments.

National Osteoporosis Foundation (South Africa)

Michele Wolman Michele Wolman of the National Osteoporosis Foundation of South Africa is presented with the award.

Despite convincing evidence that calcium supplementation has a modest, but important role to play in preventing fractures, especially in the young and in the very old, very few of the healthcare providers in South Africa are currently reimbursing calcium supplementation although HRT, bisphosphonates, nasal calcitonin etc. are readily reimbursed.

The National Osteoporosis Foundation's campaign, 'Calcium Supplementation – Convincing the Funders', will formally assess the current situation and lobby the medical establishment for an increase in the reimbursement of calcium supplements. Details of the campaign:

  • Assess what percentage of medical aid schemes in South Africa presently reimburse calcium supplementation for the prevention / treatment of osteoporosis.
  • Document reasons why calcium supplementation is not reimbursed.
  • Conduct an educational course for the medical advisors of all the medical aid schemes highlighting the importance of calcium supplementation in osteoporosis. This will be accomplished via personal interview, literature package, and consensus meeting with all the advisers.
  • Reassessment of the percentage of medical aid schemes who reimburse calcium / reasons why calcium is not reimbursed, approximately 6 months after the initial assessment.

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