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• W2111034148 abstract "The Global economic difficulties of the past five years have resulted in an increased focus on health economics, cost effectiveness analysis, cost benefit analysis and indicators examining the use of resources in health care. Health TechnologyAssessments (HTA) are the most widely used tool in Europe to measure the cost effectiveness of medical treatment. In the United States, Comparative Effectiveness Research (CER) is most often used. These trends are unlikely to change. I am sure that there will be increased scrutiny on the cost of healthcare, specific interventions and routine treatment for rare diseases into the future. Rare diseases are often more expensive to treat than conditions with a higher incidence. There will almost inevitably be more work done by HTA agencies and other Government bodies in examining the costs of care for rare disorders in the future. Patient organisations who represent those with rare diseases need to embrace this reality, engage positively with the process, understand the scientific data, collaborate in the production of treatment and outcome data and ensure that their voices are formally heard as an integral part of the process. The information in this chapter specifically relates to HTA’s in haemophilia. However, the approach taken, the focus on the data required in any given situation and the response required is an approach which can be taken by any patient organisation dealing with any condition and more specifically with any rare disease. People with haemophilia require lifelong treatment with clotting factor in order to manage frequent bleeding episodes and reduce the risk of joint damage requiring surgery and/or resulting in restricted mobility (as well as other potential organ damage). The prevention of bleeds with factor concentrate has become standard practice for the treatment of haemophilia. To date there have been few restrictions on funding and access to new treatments for haemophilia in developed countries. However, a climate change is occurring in haemophilia as new expensive products come to market, health care payers turns to questions of whether costs can be controlled without major detriment to patients. As a result, the areas of Health Technology Assessment (HTA) and evidence based medicine are increasing efforts to collect data on patient" @default.
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• W2111034148 date "2011-01-01" @default.
• W2111034148 modified "2023-09-26" @default.
• W2111034148 title "An introduction to key concepts in health economics for haemophilia organisations" @default.
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• W2111034148 doi "https://doi.org/10.3233/ppl-2011-0320" @default.
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