Orphan drugs
Total results in % based on votes of 227 people
| Policy | |
|---|---|
1 | Since resources are limited, there should be a limit and only cost effective drugs that benefit the greater number of patients should be reimbursed. If a drug purchaser has to choose between treating 10 patients with drug A or 1 with drug B for a rare disease, then the choice should always be to treat 10 with drug A. |
2 | Only cost effective drugs should be reimbursed, but the approach for orphan drugs should be different than for common diseases. If there is any doubt about the cost effectiveness of an orphan drug, it should be exceptionally reimbursed in certain cases. |
3 | Like position 2, but if there is any doubt about the cost effectiveness of an orphan drug, the benefit of doubt should be given to the patient and the drug should be reimbursed systematically. |
4 | Health is a priority for European citizens. Just as efforts to rescue people after an accident are not restricted, efforts to rescue a patient with a rare disease should not be limited. Cost effectiveness should not be the parameter on which to base reimbursement decisions. |
Overview of the new policies developed by players.
Sundhed har altid høj prioritet for europæiske borgere. Ligeså vel som alt skal gøres for at redde mennesker efter en ulykke, skal alt også gøres for at behandle en patient. Konceptet med økonomisk effektivitet virker ikke når det gælder OD og skal ikke have betydning for hvorvidt der gives tilskud eller ej.
Denmark, 26/02/2010
The most efficient treatment for the patient should be based on both medical and resebilitation. There should be regional equalitation, and it should be based both on the experiences and on the medical experience. On valittava potilaan kokonaishodon kannalta vaikuttavin hoito, joka on sekä lääketieteellinen että kuntoutuksellinen. Sen on toteuduttava alueellisesti yhdenvertaisesti, ja sen on perustuttava sekä kokemukseen että lääketieteelliseen asiantuntijuuteen.
Finland, 28/02/2010
Harvinaislääkkeiden kohdalla lähsetymistavan tulee poiketa tavallisista sairauksista. Jokaisella EU:n kansalaisella tulee olla yhdenvertainen oikeus saada korvattua hoitoa harvinaissairauksiin.
Finland, 28/02/2010
Everyone should have a subjective ritht to good treatment regardless of their residence on their deagnosis. Decisions of treatment on medicine for rare diseases must not be dependent of municipal economy or existence or absence of clinical and other expertise. Kaikilla tulee olla subjektiivinen oikeus hyvään hoitoon asuinpaikasta ja sairaudesta riippumatta. Harvinaishoudosta ja harvinaislääkkeistä päättäminen ei saa olla kiinni kunnan taloudellisesta tilanteesta eikä asiantuntemuksesta tai sen puutteesta.
Finland, 28/02/2010
Harvinaislääkkeiden tutkiminen ja kehittäminen voi johtaa hyötyihin myös yleisempien sairauksen hoidossa (= win-win). Ihmisarvoa ei saa alistaa pelkästään taloudellisille arvoille.
Finland, 28/02/2010
Kun økonomisk effektiv medicin skal have tilskud, men indgangsvinklen til OD skal være anderledes end til anden medicin. Økonomisk effektivitet re noget andet, når det handler om sjældne sygdomme
Denmark, 10/04/2010
Like Policy 3 if we introduced a policy where the government take on responsibility for adopting a fair trade policy surrounding the research development and production of orphan drugs
United Kingdom, 22/06/2010
Like position 2, but if there is any doubt about the cost effectiveness of an orphan drug, the benefit of doubt should be given to the patient and the drug should be reimbursed systematically according to a personal budget.
Hungary, 14/04/2010
Come accade per i certficati verdi nel settore economico ambientale, le ditte farmaceutiche dovrebbero reinvestire parte dei ricavi, in proporzione al fatturato, nella ricerca dei medicinali orfani, pena il pagamento di sanzioni stabilite dalla Comunità Europea.
Italy, 28/02/2011
Efficacy and necessity of drug should be defined better- if a drug is the only one available for a disease it should be reimbursed.
Netherlands, 12/05/2011
According to a published working document, Szell Kalman Plan proposes a European level risk management concerning Orphan drugs. Whatever the details of this recommendation, parallel to market authorisation, the factors directing patients' access to these drugs could also be tackled at a wider than regional or national levels. This would mean different things for different actors, for example, it may bring about a stricter Eu level control over member state budgetary issues, still Eu level solidarity would bring hope to many. A Széll Kálmán Terv intézkedés tervezetei közt szerepel az árva gyógyszerek esetében EU-s szintű kockázatvállalás. Bármi is legyen e javaslat pontos tartalma, a gyógyszerek fejlesztését, forgalomba hozatalát szabályozó kérdésekhez hasonlóan európai szintűvé lehetne tenni a hozzáférést meghatározó tényezőket is. Jelentse ez akár a nemzeti költségvetések szorosabb EU-s szintű kontrollját, a társadalombiztosítási kérdések európai szintű szoldiratásba emelése sokaknak adna reményt.
Hungary, 06/06/2011
To the proposal 4 we add that it should be considered to evaluate in the case of low budgets: the severity of the disease, how much it enhances the quality of life for the patient, and finally, it would be important to know how much people will benefit by having the Orphan drug.
Spain, 25/06/2011
It is essential that results of clinical trials that concern RD are shared at Europen level. Postmarketing assessment on the efficacy and safety of orphan drugs must be encouraged and effective drugs must be accessible for all patients and reimbursed. New procedures are needed to allocate funds to research and to avoid that the incentives to drug companies lead to the lack of competition
Italy, 27/05/2011
Health is a right for all citizens and the reimbursement and access to all effective drugs is also an ethical issue .The society should take on the economic burden even though a rationalization of the resources with a more active involvement of POs, is needed
Italy, 27/05/2011
The access to the best treatment available is a right as stated in the European Convention of Human Rights. Therapeutic research on RD should be supported at European level and common therapeutic protocols should be developed . Drug companies’ benefits must be confirmed based on post marketing evaluation of drug efficacy.
Italy, 27/05/2011
Efficacy of OD should be evaluated taking in consideration clinical aspects as well as quality of life. Once it has been assessed the drug should be accessible and reimbursed to all patients in the need. These criteria should be shared and applied at European level
Italy, 27/05/2011
Only cost effective drugs should be reimbursed but the approach for orphan drugs should be different to that for common diseases. But if there is any doubt about the cost effectiveness of an orphan drug, the benefit of the doubt should be given to the patient and the drug should be reimbursed according to clinically meaningful outcomes which are followed up and reassessed systematically.
Belgium, 17/08/2011
Denmark, 26/02/2010
The most efficient treatment for the patient should be based on both medical and resebilitation. There should be regional equalitation, and it should be based both on the experiences and on the medical experience. On valittava potilaan kokonaishodon kannalta vaikuttavin hoito, joka on sekä lääketieteellinen että kuntoutuksellinen. Sen on toteuduttava alueellisesti yhdenvertaisesti, ja sen on perustuttava sekä kokemukseen että lääketieteelliseen asiantuntijuuteen.
Finland, 28/02/2010
Harvinaislääkkeiden kohdalla lähsetymistavan tulee poiketa tavallisista sairauksista. Jokaisella EU:n kansalaisella tulee olla yhdenvertainen oikeus saada korvattua hoitoa harvinaissairauksiin.
Finland, 28/02/2010
Everyone should have a subjective ritht to good treatment regardless of their residence on their deagnosis. Decisions of treatment on medicine for rare diseases must not be dependent of municipal economy or existence or absence of clinical and other expertise. Kaikilla tulee olla subjektiivinen oikeus hyvään hoitoon asuinpaikasta ja sairaudesta riippumatta. Harvinaishoudosta ja harvinaislääkkeistä päättäminen ei saa olla kiinni kunnan taloudellisesta tilanteesta eikä asiantuntemuksesta tai sen puutteesta.
Finland, 28/02/2010
Harvinaislääkkeiden tutkiminen ja kehittäminen voi johtaa hyötyihin myös yleisempien sairauksen hoidossa (= win-win). Ihmisarvoa ei saa alistaa pelkästään taloudellisille arvoille.
Finland, 28/02/2010
Kun økonomisk effektiv medicin skal have tilskud, men indgangsvinklen til OD skal være anderledes end til anden medicin. Økonomisk effektivitet re noget andet, når det handler om sjældne sygdomme
Denmark, 10/04/2010
Like Policy 3 if we introduced a policy where the government take on responsibility for adopting a fair trade policy surrounding the research development and production of orphan drugs
United Kingdom, 22/06/2010
Like position 2, but if there is any doubt about the cost effectiveness of an orphan drug, the benefit of doubt should be given to the patient and the drug should be reimbursed systematically according to a personal budget.
Hungary, 14/04/2010
Come accade per i certficati verdi nel settore economico ambientale, le ditte farmaceutiche dovrebbero reinvestire parte dei ricavi, in proporzione al fatturato, nella ricerca dei medicinali orfani, pena il pagamento di sanzioni stabilite dalla Comunità Europea.
Italy, 28/02/2011
Efficacy and necessity of drug should be defined better- if a drug is the only one available for a disease it should be reimbursed.
Netherlands, 12/05/2011
According to a published working document, Szell Kalman Plan proposes a European level risk management concerning Orphan drugs. Whatever the details of this recommendation, parallel to market authorisation, the factors directing patients' access to these drugs could also be tackled at a wider than regional or national levels. This would mean different things for different actors, for example, it may bring about a stricter Eu level control over member state budgetary issues, still Eu level solidarity would bring hope to many. A Széll Kálmán Terv intézkedés tervezetei közt szerepel az árva gyógyszerek esetében EU-s szintű kockázatvállalás. Bármi is legyen e javaslat pontos tartalma, a gyógyszerek fejlesztését, forgalomba hozatalát szabályozó kérdésekhez hasonlóan európai szintűvé lehetne tenni a hozzáférést meghatározó tényezőket is. Jelentse ez akár a nemzeti költségvetések szorosabb EU-s szintű kontrollját, a társadalombiztosítási kérdések európai szintű szoldiratásba emelése sokaknak adna reményt.
Hungary, 06/06/2011
To the proposal 4 we add that it should be considered to evaluate in the case of low budgets: the severity of the disease, how much it enhances the quality of life for the patient, and finally, it would be important to know how much people will benefit by having the Orphan drug.
Spain, 25/06/2011
It is essential that results of clinical trials that concern RD are shared at Europen level. Postmarketing assessment on the efficacy and safety of orphan drugs must be encouraged and effective drugs must be accessible for all patients and reimbursed. New procedures are needed to allocate funds to research and to avoid that the incentives to drug companies lead to the lack of competition
Italy, 27/05/2011
Health is a right for all citizens and the reimbursement and access to all effective drugs is also an ethical issue .The society should take on the economic burden even though a rationalization of the resources with a more active involvement of POs, is needed
Italy, 27/05/2011
The access to the best treatment available is a right as stated in the European Convention of Human Rights. Therapeutic research on RD should be supported at European level and common therapeutic protocols should be developed . Drug companies’ benefits must be confirmed based on post marketing evaluation of drug efficacy.
Italy, 27/05/2011
Efficacy of OD should be evaluated taking in consideration clinical aspects as well as quality of life. Once it has been assessed the drug should be accessible and reimbursed to all patients in the need. These criteria should be shared and applied at European level
Italy, 27/05/2011
Only cost effective drugs should be reimbursed but the approach for orphan drugs should be different to that for common diseases. But if there is any doubt about the cost effectiveness of an orphan drug, the benefit of the doubt should be given to the patient and the drug should be reimbursed according to clinically meaningful outcomes which are followed up and reassessed systematically.
Belgium, 17/08/2011
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