Professional Documents
Culture Documents
February 2010
Introduction
About Parts I and II
Appendix with profiles of respondent patient groups
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Introduction
A snapshot of 2009
2009 was a busy year for healthcare, the pharmaceutical industry, patients and their
representative patient groups. The inauguration of President Obama in January 2009 led to
attempts by the US to push through radical reforms to its healthcare system. The new US
Administration aimed to offer non-elderly American citizens (whatever their background, but with
a specific focus on the uninsured) an optional insurance package of basic medical coverage at
lower cost than has been supplied by the private sector. As part of the reforms, the new US
government placed pressure on pharma to reduce its medicine prices.
In Europe during 2009, the European Commission sought to establish a legislative framework for
a number of patients’ rights. The efforts had stalled by the end of the year.
Health technology assessment (HTA) drew increasing attention worldwide. The rift between HTA
agencies and patients widened following decisions by a number of national HTA agencies to advise
against the reimbursement of several key drugs (notably cancer treatments), prompting patient
groups to fight against those decisions.
Perhaps the two most prominent healthcare topics of 2009 were, firstly, the adverse impact of the
global recession on healthcare budgets—and therefore upon health inequities. According to the
health NGOs cited in the HSCNews Bulletins of 2009, people with a disability, and those with a
mental health problem, were especially affected by recession-induced healthcare inequities. The
other dominant health topic to hit the headlines during 2009 was the global spread of swine flu.
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© PatientView 2010
February 2010 Patient groups’ views of pharma
The findings of the annual review are published in this and the next issue of HSCNews (Part 1 and
Part 2 of the results). In both parts, the patient groups’ opinions have allowed HSCNews to analyse
industry trends during 2009 ...
... across five regions of the world
(Australasia; Western Europe; Eastern Europe; North America; and Latin America)
... and in six medical specialties
(common cancers; rare cancers; diabetes; HIV/AIDS; mental health; and neurological conditions).
Where possible, the results from this 2009 annual review have been compared with those of the
previous year (2008), to highlight changing trends.
The 665 patient groups commented on the quality of pharma company relationships with
patient groups in 2009.
They also gave their views on pharma performance in 2009 (according to seven patient
group-oriented indicators):
Finally, the patient groups considered pharma’s record in 2009 on various activities:
—Record on innovation. —Marketing.
—Disease-awareness campaigns. —Ensuring product safety.
—Pricing policies/getting products reimbursed. —Truthfulness/accuracy when communicating to patients.
HSCNews International
International,, issue
2nd annual review
52, January of patient
2010 © PatientView
groups’ views
2010on pharma Page 2
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February 2010 Patient groups’ views of pharma
Next month:
Part 2 of this 2009 annual review will focus on corporate
strategies and the performance of
the top-15 pharma companies
The patient groups that replied to the previous HSCNews annual review of 2008 [see HSCNews,
issues 46 and 47, November 2008 and January 2009] had mentioned ways in which pharma might
help them (outside of providing direct funding). In this 2009 annual review, patient groups were
asked to comment on whether drug companies were acting upon those earlier suggestions.
Part 2 of the 2009 annual review, due to be published in the next issue of HSCNews, will report
patient groups’ opinions on:
Corporate strategies to help poorer patients during the 2009 global recession
The performance of the top-15 pharma companies (rankings determined by the groups
themselves), according to:
—Trustworthiness.
—Ability to handle relationships with patient groups.
—Supplying patients with information.
—Understanding patients’ needs.
In 2010?
Finally, this annual review asked patient groups to provide advice on how pharmaceutical
companies could improve their performance—from the patients’ perspective—during 2010.
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February 2010 Patient groups’ views of pharma
Appendix
I. Regional distribution of respondents
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February 2010 Patient groups’ views of pharma
The review’s 665 respondent patient groups were drawn from 47 countries around the world. Just over half of the
respondents came from Western Europe (19 countries).
The respondent patient groups were surveyed by HSCNews in five languages (English, French, German, Italian, and
Spanish).
The 665 respondents are interested in a wide range of medical issues. The main specialties are common cancers (13% of
respondent patient groups); mental health (13%); neurological conditions (13%); diabetes (8%); HIV/AIDS (6%); and
rare cancers (5%).
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February 2010 Patient groups’ views of pharma
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February 2010 Patient groups’ views of pharma
Continued:
Organisations and individuals wishing to be named as participants in this
2009 HSCNews annual review of patient groups’ view of pharma.
Respondents’ names are spelled as supplied by the respondents themselves.
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© PatientView 2010
February 2010 Patient groups’ views of pharma
Continued:
Organisations and individuals wishing to be named as participants in this
2009 HSCNews annual review of patient groups’ view of pharma.
Respondents’ names are spelled as supplied by the respondents themselves.
San Diego City Help, Terry Brazell, MD. ASOCIACIÓN BIPOLAR EN CANARIAS.
Shari Fiksdal. Asociación Bipolares de Andalucía (ABBA).
Southern Delaware Prostate Cancer Support Group. Asociación de Fibromialgia y Síndrome de Fatiga Crónica
Tina Holland. de Salamanca y Provincia.
USToo! Texoma and WN Jones Health Science Foundation. ASOCIACION ESPAÑOLA DE SÍNDROME DE SÖGREN.
Wellness Community, The. Associação de Doentes com Lúpus.
Wellness Doctrine. Association APEDYS Aquitaine, Association de Parents
Wendy Poage, Prostate Conditions Education Council. d'Enfants DYSlexiques.
ASSOCIATION DES DIABETIQUES DE COTE D'OR.
Association Dyspraxique Mais Fantastique.
Western Europe Association for Medical and Therapeutic Self-
Determination (MeTZelf).
ACCION PSORIASIS. Association François Aupetit.
ADARA, Asociación de Afectados de Enfermedades Association Francophone des glycogénoses.
Reumáticas de Aragon. Association Maladie Rare.
ADHARA, Asociación vih/sida. Association Régionale des Diabètiques du Poitou
ADHD Norway Troms. Charentes.
Ados. Association Spina Bifida et Handicaps Associes.
ADVOCACY France. Association Vivre sans Thyroïde.
AFAPAC FOUNDATION, Dr. K.A. Adanse-Pipim, Director. ASSOCIAZIONE BIANCA GARAVAGLIA ONLUS.
AFEPVI, Asociación de Familiares y Personas con ASSOCIAZIONE DIABETICI DELLA PROVINCIA DI MILANO.
Enfermedad Mental del Alto Vinalopó. ASSYMCAL, Association des Malades du Syndrome de
AFIBROCAT, Asociació d'ajuda per la FIBROmialgia de McCune-Albright et de Dysplasie Fibreuse des Os
CATalunya. (Maladies Rares).
AFRICA POSITIVE ACTION France. Atout-Coeur Broye.
AICH - Neuromed. ATRACTO ASSOCIAZIONE TRAUMI CRANICI TOSCANI
AIDO, Associazione Italiana Donatori Organi Tessuti e ONLUS.
Cellule. AVAL Atlantique.
Aldo Sardoni, Presidente, Bianco Airone Pazienti onlus. B.A.O Málaga, Bipolares de Andalucia Oriental en Málaga.
Allan Jørgensen, Bedre Psykiatri. Balans Gävle.
Allegro Fortissimo. Beaumont Trust, The.
Allergy UK. Behcets Syndrome Society.
Alzheimer Gesellschaft Bremen e.V. Betty Redpath, Merton Branch, MS Society.
Angst- und Panikhilfe Schweiz APhS, Marco Todesco, Borderline-Projekt.
President. Bristol and Avon Chinese Women's Group.
ANVOLT, ASSOCIAZIONE NAZIONALE VOLONTARI LOTTA BzV der Kehlkopflosen Stuttgart e.V.
CONTRO I TUMORI. Cancer Choices.
APACHE. Carlos Enrech.
APCH, Association des Pancreatites Chroniques CENTER FOR LIFE.
Hereditaires. Centro Antifumo "Lunigiana senza fumo” Asl1 Massa e
APDPróstata. Carrara.
APLL. CInCH.
Arcigay Bologna. Clar ni Shionoid.
Arcigay Palermo. Colectivo No Te Prives.
ARGOS 2001. Construction Workers Health Trust.
Arthur J O'Hara. Snr, Chairman, Irish Sleep Apnoea Trust. Couples Contre le Sida.
ASAPME HUESCA. Cutis Laxa International.
Asoc. Cantabra de Fibromialgia.
HSCNews International, 2nd annual review of patient groups’ views on pharma Page 9
© PatientView 2010
February 2010 Patient groups’ views of pharma
Continued:
Organisations and individuals wishing to be named as participants in this
2009 HSCNews annual review of patient groups’ view of pharma.
Respondents’ names are spelled as supplied by the respondents themselves.
HSCNews International, 2nd annual review of patient groups’ views on pharma Page 10
© PatientView 2010
February 2010 Patient groups’ views of pharma
Continued:
Organisations and individuals wishing to be named as participants in this
2009 HSCNews annual review of patient groups’ view of pharma.
Respondents’ names are spelled as supplied by the respondents themselves.
HSCNews International, 2nd annual review of patient groups’ views on pharma Page 11
© PatientView 2010
February 2010 Patient groups’ views of pharma
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© PatientView 2010 http://twitter.com/PatientView
HEALTH and SOCIAL CAMPAIGNERS’ NEWS INTERNATIONAL
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2008
2009
Issue 47 (January)
√ Patient perspectives on the pharmaceutical industry; part 2.
Issue 48 (March)
√ Patients’ views on life with ADHD (parts 1 and 2 of the results of an HSCNews UK survey).
Issue 49 (May)
√ Patients’ rights in Europe: a step forward.
Issue 50 (August)
√ The Italian patient movement: financing; campaigning; influence on policymaking; reputation and recognition;
obstacles and opportunities. Interviews with six Italian patient groups.
Issue 51 (November)
√ The Austrian patient movement: financing; campaigning; influence on policymaking; reputation and recognition;
obstacles and opportunities. Interviews with six Italian patient groups.
PATIENT VIEWS OF PHARMA:
INTRODUCTION
HSCNEWS INTERNATIONAL
February 2010
PUBLISHED BY:
PATIENTVIEW
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TEL: 0044-(0)1547-520-965
EMAIL: INFO@PATIENT-VIEW
HTTP://WWW.PATIENT-VIEW.COM