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210907 r ||| eng |
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|a Ultra orphan drugs
|h Elektronische Ressource
|b London, November 2004
|c NICE Citizens Council
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|a London
|b National Institute for Clinical Excellence (Great Britain)
|c 2004, November 19, 2004
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|a 1 PDF file (36 pages)
|b illustrations, portrait
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|a United Kingdom
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|a Drug Costs / standards
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| 653 |
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|a Orphan Drug Production / economics
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|a State Medicine
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|a NICE Citizens Council
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|a National Institute for Clinical Excellence (Great Britain)
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|a eng
|2 ISO 639-2
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|b NCBI
|a National Center for Biotechnology Information
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|a Citizens Council reports
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|u https://www.ncbi.nlm.nih.gov/books/NBK401721
|3 Volltext
|n NLM Bookshelf Books
|3 Volltext
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|a 610
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|a 330
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|a The Citizens Council provides NICE with a public perspective on overarching moral and ethical issues that NICE should take into account when producing guidance. Made up of members of the public, broadly representative of the adult UK population, the Council operates through a "citizens' jury" style meeting, to explore and respond to a question set by NICE. The Citizens Council was asked to advise on whether or not the NHS should be prepared to pay premium prices for drugs to treat patients with very rare diseases. Twenty-seven members of the Citizens Council met to discuss this over the course of three days in November 2004. "Everyone approached this discussion from the point of view of wanting to do what's fair - but we have different ideas on fairness.
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|a The main criteria that the Citizens Council thinks the NHS should take into account when deciding to pay premium prices for ultra orphan drugs are, in descending order of importance: 1. The degree of severity of the disease2. If the treatment will provide health gain, rather than just stabilisation of the condition3. If the disease or condition is life-threateningThe second change is that, in order to see whether particular circumstances really are associated with such serious adverse outcomes as near misses or death, the Enquiries are now also starting to look at information from some patients who have had a good outcome. The Enquiries then compare the care received by patients who have had different outcomes in order to understand what effect care has on patients and identify "risk factors"
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|a Twenty of us have taken a decision that we should use a different way of assessing value - sixteen give a qualified yes with conditions when it comes to paying for ultra orphan drugs, and four think that there shouldn't be conditions attached. Seven of us feel that rare diseases should not have a different decision making process applied to them." In summary, our conclusions were as follows: Just over half (16) of Council members thought that, with certain conditions, the NHS should consider paying premium prices for drugs to treat patients with very rare diseases. A further four people thought that the NHS should pay whatever premium price is required for drugs to treat patients with very rare diseases. Seven of us concluded that the NHS should not consider paying premium prices for drugs to treat patients with very rare diseases, but should decide whether or not to provide ultra orphan drugs using the same clinical and cost effectiveness appraisals as any other treatment.
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