Background
Methods
- Has your organisation ever taken action about the pricing/and or the payment allowance for a drug?
(e.g. by contacting other organisations or groups, submitting complaints, taking legal steps)
|
- In the case of which drug(s) did your organisation take action? |
- For which reason(s) did your organisation take action? |
- What form did the action(s) take?
(please also refer to the authorities or bodies at which the action was aimed)
|
- What did your organisation wish to achieve with the action? |
- Did your organisation achieve its goal? |
- Did your organisation take action alone or jointly with others? |
- Which action(s) did your organisation undertake with others? |
- With whom did your organisation undertake the action(s)? |
- Who took the initiative to act jointly? |
- With hindsight, how does your organisation evaluate its role in the process (according to level of satisfaction)? Please give your reasons for the answer. |
- Which recommendations would your organisation give to other patient organisations? (please indicate what you would advise and what you would advise against)
|
- Does your organisation have a policy (protocol) on collaboration with the pharmaceutical industry? Please indicate the key points of your organisation's policy (or protocol). |
So far your organisation has taken no action in respect of the pricing or payment allowance for drugs. In that case please answer the questions below. |
- Has your organisation ever been approached with a view to taking action in respect of pricing and/or the payment allowance for drugs? |
- Has your organisation ever considered taking action? |
- By whom was your organisation approached? |
- Why did you not take this up/take any action? |
Results
Responding patient organisations:
|
- Vlaamse Vereniging van Cushing Addison, Belgium |
- Astma en Allergiekoepel, Belgium |
- Vlaamse Diabetes Vereniging, Belgium |
- Nationale Belgische Multiple Sclerose Liga, Belgium |
- Belgian Heart League, Belgium |
- Dansk Parkinsonforening, Denmark |
- Heart Foundation, Denmark |
- Finnish Heart Association, Finland |
- Allergia-ja Astmaliitto, Finland |
- HyperSupers TDAH (ADHD), France |
- Diabetes Federation, Ireland |
- Young Parkinson, Ireland |
- Asthma Society, Ireland |
- Parkinson Patiënten Vereniging, Netherlands |
- Stichting Hoofd Hart en Vaten (SHHV), Netherlands |
- MS Vereniging, Netherlands |
- Nederlandse Vereniging voor Addison en Cushing patiënten, Netherlands |
- Astma och Allergi Förbundet, Sweden |
- Swedish Diabetes Association, Sweden |
- Riksförbundet Attention, Sweden |
- Schweizerische Herzstiftung, Switzerland |
Non-responding patient organisations:
|
- Centrum ZitStil (ADHD), Belgium |
- Association Parkinson, Belgium |
- Diabetesforeningen, Denmark |
- Asthma and Allergy Forbundet, Denmark |
- Scleroseforeningen, Denmark |
- ADHD-foreningen, Denmark |
- Addison Foreningen, Denmark |
- Diabetesliitto, Finland |
- Suomen MS-liitto ry, Finland |
- ADHD liitto ry, Finland |
- Suomen Parkinson-liitto ry, Finland |
- Addison Support group, Finland |
- French Federation of Cardiology, France |
- Association Française des Diabétiques, France |
- Association Asthme & Allergies, France |
- Lique Francaise contre la Sclérose en Plaques, France |
- Association France Parkinson, France |
- Association Surrenales, France |
- Herzstiftung, Germany |
- Deutsche Diabetes-Union, Germany |
- German Allergy and Asthma Association (DAAP), Germany |
- Deutsche Multiple Sklerose Gesellschaft (DMSG), Germany |
- Bundesverband Arbeitskreis Überaktives Kind, Germany |
- PARKINSonLINE e.v. (PAoL), Germany |
- Netzwerk Hypophysen- und Nebennierenerkrankungen, Germany |
- Irish Heart Foundation, Ireland |
- Multiple Sclerose Society (MSI), Ireland |
- The North Fingal ADD/ADHD Parent and Adult Support Group, Ireland |
- Diabetesvereniging, Netherlands |
- Coalitie of Astmafonds, Vereniging Nederlands Davos & Astmapatiënten, Netherlands |
- Balans & Impuls, Netherlands |
- Heart and Lung Association, Sweden |
- Neurologiskt Handikappades Riksforbund (NHR), Sweden |
- Parkinson Förbundet, Sweden |
- Stödföreningen Hypophysis, Sweden |
- Swiss Diabetes Society, Switzerland |
- Coalition of aha! Zentrum für Allergie, Haut und Asthma, Switzerland |
- Schweizerische Multiple Sklerose Gesellschaft (SMSG), Switzerland |
- Interessengruppe Aufmerksamkeitsdefizit-Syndrom, Switzerland |
- Parkinson Schweiz, Switzerland |
- British Heart Foundation, United Kingdom |
- Diabetes UK, United Kingdom |
- Asthma UK, United Kingdom |
- MS Society, United Kingdom |
- Thanet ADDers ADD/ADHD Support Group, United Kingdom |
- Parkinson's Disease Society, United Kingdom |
- Addison's Disease Self Help Group, United Kingdom/Ireland |
The role of patient organisations in the reimbursement process and their success
Organisations that tried to obtain reimbursement (N = 10) | Organisations that did not try to obtain reimbursement (N = 11) | |
---|---|---|
Patient organisation
(and number if >1)
| Asthma (and Allergy) Heart and vascular disease (3) Parkinson disease Diabetes (2) ADHD Multiple Scleroses | Asthma (and Allergy) (2) Heart and vascular disease (2) Parkinson disease (2) Diabetes ADHD Multiple Scleroses Addison and Cushing disease (2) |
Countries
| Belgium, Denmark, Ireland, Finland, Netherlands, Sweden | Belgium, Denmark, Ireland, France, Netherlands, Sweden Switzerland |
Average number of paid employees
| 26 (range: 7-80) | 5 (range: 0-17) |
Average number of volunteers
| 200-500 (range: <200 - >500) | < 200 (range: <200-500) |
Average number of affiliated patients
| 31.080 (range: 5.500 - 90.000) | 9.805 (range: 850 -36.000) |
Sort organisation
(and number if > 1)
1
| Independent: 9 An umbrella for a number of smaller patient organisations: 2 Part of a European network of patient organisations: 6 Part of an international network of patient organisations: 6 | Independent: 10 An umbrella for a number of smaller patient organisations: 2 Part of a European network of patient organisations: 6 Part of an international network of patient organisations: 2 |
Medication
2
|
Patient organisation
|
Actions
|
---|---|---|
Atorvastatin and rosuvastatin | Heart Association, Finland | (Special) reimbursement application directed to the concerned authorities |
Statins | Diabetes Federation, Ireland | - Lobbying the government (national and local level) for complete reimbursement. The Departement of Health and politicians were asked to support the application |
Methylfenidate | Riksförbundet Attention, Sweden | - Informing the media - Broadcasting the names of individuals who needed the medication - Commissioning university research on the life conditions of members. |
Glargin and detemir | Vlaamse Diabetes Vereniging, Belgium | Providing scientific advice to the concerned Minister. |
Asthma inhaling medication | Astma och Allergi Förbundet, Sweden | Letters to the concerned authorities. |
Clopidrogel | Stichting Hoofd Hart en Vaten (SHHV), Netherlands | - Inviting the concerned parties around the table - Informing the media - Letters to the concerned authorities |
Statins | Heart Foundation, Denmark | Letters to the concerned authorities. |
Interferon-beta | Nationale Multiple Sclerose Liga, Belgium | Written protest to the Department of Health. |
Combination of levodopa&carbidopa (duodopa) | Parkinson Association, Belgium | Letters to the concerned authorities. |
Rasagilin | Parkinson Patiënten Vereniging, Netherlands | Letters to the concerned authorities. |