8/14/2019 HSCNews Issue 52 February 2010
1/16
The pharmaceutical industry in 2009
and looking to 2010
the patient perspective
HSCNews issue 52
February 2010
Introduction
About Parts I and II
Appendix with profiles of respondent patient groups
8/14/2019 HSCNews Issue 52 February 2010
2/16
CONTACT DETAILS
PATIENTVIEWHEALTH AND SOCIAL CAMPAIGNERS NETWORK INTERNATIONAL
Health and Social Campaigners News International
WOODHOUSE PLACE
UPPER WOODHOUSE
KNIGHTON
POWYS, LD7 1NG
UK
TEL: +44-(0)1547-520-965
EMAIL: [email protected]
HTTP://WWW.PATIENT-VIEW.COM
Please note that PatientView is not responsible for, and may not
necessarily agree with, the opinions expressed within the pages of
HSCNews Internationalby contributors or interviewees.
COPYRIGHT
2010 PatientView Ltd. All rights reserved.
This booklet is the property of PatientView, and no part may be reproduced
without permission, or passed on to any third party without the permission
of PatientView.
Registered Address for PatientView:
Millennium Bridge House, 2 Lambeth Hill, London, EC4V 4AJ, UK
Data protection registration number: Z7133076
VAT registration number: GB-760-985-885
Company number: 3944382
8/14/2019 HSCNews Issue 52 February 2010
3/16
February 2010 Patient groups views of pharma
HSCNews International, 2nd annual reviewof patient groups views on pharma Page 1 PatientView 2010
Introduction
A snapshot of 2009
2009 was a busy year for healthcare, the pharmaceutical industry, patients and theirrepresentative patient groups. The inauguration of President Obama in January 2009 led toattempts by the US to push through radical reforms to its healthcare system. The new USAdministration aimed to offer non-elderly American citizens (whatever their background, but witha specific focus on the uninsured) an optional insurance package of basic medical coverage atlower cost than has been supplied by the private sector. As part of the reforms, the new USgovernment placed pressure on pharma to reduce its medicine prices.
In Europe during 2009, the European Commission sought to establish a legislative framework fora 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 HTAagencies and patients widened following decisions by a number of national HTA agencies to adviseagainst the reimbursement of several key drugs (notably cancer treatments), prompting patientgroups to fight against those decisions.
The quality of services provided by health professionals remained a prominent subject ofdiscussion worldwide, as did the role and rights of unpaid carers. Issues about the quality ofpatient information, patient group relationships with pharma, and medical safety all surfacedduring the year.
Perhaps the two most prominent healthcare topics of 2009 were, firstly, the adverse impact of theglobal recession on healthcare budgetsand therefore upon health inequities. According to thehealth NGOs cited in the HSCNews Bulletins of 2009, people with a disability, and those with amental health problem, were especially affected by recession-induced healthcare inequities. Theother dominant health topic to hit the headlines during 2009 was the global spread of swine flu.
The growth of the patient movement
Patient groups continued to multiply in number and diversity during 2009, forming ever-morepotent relationships by networking and co-operation. Many have been conducting valuablemarket and medical research to add impetus to their campaigns. Others have been active andinfluential on the international political scene. Social media began to attract the interest ofpatients and their representative patient groups worldwide.
8/14/2019 HSCNews Issue 52 February 2010
4/16
February 2010 Patient groups views of pharma
HSCNews International, 2nd annual reviewof patient groups views on pharma Page 2 PatientView 2010
February 2010 Patient groups views of pharma
HSCNews International, issue 52, January 2010 PatientView 2010 Page 2
About this survey
During December 2009, HSCNews international conducted an annual online review of patientgroups opinions of the pharmaceutical industry. 665 patient groups from 47 countries around theworld, and with differing specialties, told HSCNews what they thought about the industry in 2009and what industry might do patient groups in 2010.
The findings of the annual review are published in this and the next issue of HSCNews (Part 1 andPart 2 of the results). In both parts, the patient groups opinions have allowed HSCNews to analyseindustry 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 theprevious 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):
Innovating to meet patients needs. Being trustworthy.Providing information to patient groups. Managing conflicts of interest.Creating relationships with patient groups. Managing adverse news about products.Being transparent about relationships with patient groups.
Finally, the patient groups considered pharmas 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.
In this issue of HSCNews: Part 1 of the annual review focuses on theoverall standards of pharmas performance in its relationships withpatient groups and with patients
8/14/2019 HSCNews Issue 52 February 2010
5/16
February 2010 Patient groups views of pharma
HSCNews International, 2nd annual reviewof patient groups views on pharma Page 3 PatientView 2010
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 mighthelp them (outside of providing direct funding). In this 2009 annual review, patient groups wereasked 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 reportpatient groups opinions on:
Pharma company strategies to improve relationships with patient groups:
Consulting and communicating with partner patient groups.Supporting patient group operational activities.Supporting patient group campaigning activities.
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 pharmaceuticalcompanies could improve their performancefrom the patients perspectiveduring 2010.
Next month:Part 2 of this 2009 annual review will focus on corporatestrategies and the performance ofthe top-15 pharma companies
8/14/2019 HSCNews Issue 52 February 2010
6/16
February 2010 Patient groups views of pharma
HSCNews International, 2nd annual reviewof patient groups views on pharma Page 4 PatientView 2010
Appendix
I. Regional distribution of respondents
II. Respondents areas of specialism
III. Number of respondents, by country
IV. List of patient groups wishing to be named as respondents
8/14/2019 HSCNews Issue 52 February 2010
7/16
February 2010 Patient groups views of pharma
HSCNews International, 2nd annual reviewof patient groups views on pharma Page 5 PatientView 2010
The reviews 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, andSpanish).
The 665 respondents are interested in a wide range of medical issues. The main specialties are common cancers (13% ofrespondent patient groups); mental health (13%); neurological conditions (13%); diabetes (8%); HIV/AIDS (6%); andrare cancers (5%).
8/14/2019 HSCNews Issue 52 February 2010
8/16
February 2010 Patient groups views of pharma
HSCNews International, 2nd annual reviewof patient groups views on pharma Page 6 PatientView 2010
8/14/2019 HSCNews Issue 52 February 2010
9/16
February 2010 Patient groups views of pharma
HSCNews International, 2nd annual reviewof patient groups views on pharma Page 7 PatientView 2010
Organisations and individuals wishing to be named as participants in this2009 HSCNews survey of patient groups view of pharma.
Respondents names are spelled as supplied by the respondents themselves.
AustralasiaAge Concern Manawatu Incorporated.AGSA.Australian Arachnoiditis Sufferers Queensland Association.Australian Bipolar Schizoaffective Network (ABSSN).CAHNZ Trust.Central Coast Family Support Service Inc.Chronic Illness Alliance.Coeliac Society, The.Coffs Harbour District, ME/CFS/FMS Support Group.Darwin Prostate Cancer Support Group.Frank J Schaper, Alzheimers Australia, WA Ltd.GAIN Inc., Gynaecological Awareness Information Network.
GROW (Vic).Jeannie May, Founder of Living Sphere.Jennifer Kingston, VHL Family Alliance.Kate Purcell.Linda Lee, Consumer Consultant.Mental Health Carers NT.Michael King.Myeloma Foundation of Australia Inc.Myositis Association Australia Inc.National Association of People Living with HIV/AIDS
(NAPWA).New Zealand Organisation for Rare Disorders.ozED, Australian Ectodermal Dysplasia Support Group Inc.Peter Rutledge.
SFNSW.Shane Therrien, Consumer Advocate Coordinator.Support Group Campbelltown for Chronic Fatigue/
Fibromyalgia.Topo Foundation for EDUCATION.Villa Maria.Willie Houpapa, Community Support Worker for Te Rapu
Ora Nelson.Women's Health Action Trust.
Eastern EuropeAdrian Octavian Abagiu.AIDS Information and Support Center, AIDSi Tugikeskus.
Albanian Blind Association.Alena.ANTIAIDS Coalition.Antiparkinson Asociation.APOHA, Association for Support PLHIV.ARAS, Romanian Asociation Anti-AIDS, Iasi.
Assist Prof Ljerka Cvitanovic-Sojat.Association "Women without Osteoporosis".Bulgarian Association for Patients' Defence.Cancer patient advocacy bureau in preventive medicine,
Research Society "Veselibas Laboratorija".Czech Huntingtons Disease Association.Czech Initiative for Asthma.Dolnoslasaka Fundacja Transplantacji (Lower Silesia
Transplant Foundation).Elizabeta Bobnar Najzer, Slovenian Heart Foundation.EPILEPSIJA AURA.Estonian Cystic Fibrosis Society.ESTONIAN MULTIPLE SCLEROSIS SOCIETY.Estonian Network of PLWH.Estonian Psoriasis Union.Estonian Rheumatism Association.Fanconi Czech Republic.Fejer County MS Society.Frum Pre Pomoc Starm.GENTEST s.r.o.HEPTA, Organisation of citizens, Association for Health
Education, Prevention and improved Treatment.KOLUMBUS.Latvian Association of Kidney Patients.LATVIAN DIABETES ASSOC.Lithuanian Kidney Patients' Association GYVASTIS.Lithuanian Multiple Sclerosis Union.Lithuanian Osteoporosis Foundation.
Lithuanian Society for Paediatric Gastroenterology andNutrition.Meri Matijaca.National Alliance of Associations of Hungarian
Nephropatic Patients (VORSZ).National Federation of Disabled Persons Associations
(FESZT).PARKINSON Spolenost o.s.Parkinson Spolenost o.s., Regionln Club Brno, Malatak.Patients' Ombud Office, Latvia.Polish Alzheimer's Association, The.Polish Marfan Association.Prof Svetla Torbova, PhD, MD, President of Bulgarian
Hypertension League (BHL).Psoriatic and Atopic Eczema Association (SPAE.CZ).Raican Dan Antiparkinson Asociation.Romanian Federation of Persons with Diabetes.Sergey Babin.Sie PLUS.Simona Ene.
8/14/2019 HSCNews Issue 52 February 2010
10/16
February 2010 Patient groups views of pharma
HSCNews International, 2nd annual reviewof patient groups views on pharma Page 8 PatientView 2010
Slovene Federation of Pensioners' Associations.Slovenian Coalition for Tobacco Control.Society Association HIV.LV.Soteria Foundation.Tartu Rheumatism Assotiation.Taurages vaiku astmos klubas.ZIVOT 90.
Latin AmericaAGALEMO, Asociacin de pacientes con Leucemia, Mieloma
y otros, Amalia y Glenn Dewey.Alma Delia Velasco Ledesma.
Asociacin de Ayuda a Pacientes Hemato-oncolgicos"ASAPHE".
ASOCIACION MEXICANA DE DIABETES EN CHIHUAHUA,CAPITULO CHIHUAHUA, A.C.
Asociacin Mexicana de Diabetes, A.C.Asociacin Uruguaya de Alheimer y Similares.Associao de Apoio a Pacientes Portadores de GIST,
TNE e Tumores Raros (AGIST).Fundacion Distonia.Grupo Otimismo de Apoio ao Portador de Hepatite,
Carlos Varaldo, Presidente.HERIBERTO CUEVAS L Fac Medicina UMSA.Julia Snchez Morales.Karen Bradley.
VOZ PRO SALUD MENTAL DF AC.
North AmericaAboutFace.ALS Society of BC (ALS Society of Canada).Alstrom Syndrome International.American Cancer Society, Jersey Shore Region.ANAC, Acoustic Neuroma Association of Canada.Annie Appleseed Project, The.Autism/PDD Parent Group of Philadelphia.Bill Krellner.Bonnie L. Jones, BASS, LMT.Breast Cancer Network of Strength.
Brent Lewandoski, Alberta CTAC.Canadian Breast Cancer Network.Canadian Mental Health Association, Chatham-Kent
Branch.Carcinoid Neuroendocrine Tumour Society Canada.
Charles (Chuck) Maack.Chuck V.David Josephy.Diabte Trois-Rivires.Diane Herrick.Endometriosis Research Center.FARF.Halton Aphasia Centre.Hawaii Prostate Cancer Coalition.Help for Headaches.Interstitial Cystitis Network.Jeff Kapler.Jim Crowe.Joana Ramos.LDA of ME.Libby Hartigan, SHARE! the Self-Help And Recovery
Exchange.Life Raft Group.Loretta Brown, Chair, Alberta Chapter Osteoporosis.Lorna Stevens, President/Co-founder, Neutropenia
Support Assoc. Inc.Los Angeles County Client Coalition.Luz y Cambio, Maria Ostheimer.Maine Coalition to Fight Prostate Cancer, Nelson A. Leavitt,
President.Manitoba Dystonia Support Group.Mood Disorders Assoc of MB, Eastman Region (Judy Dunn),
as well as co-founder of AndrewDunn.org.
Mood Disorders Association, Manitoba Parkland Office.NAMI, EAST SAN GABRIEL VALLEY, DOLORES ENCINAS,EX. DIR.
NAMI Flagstaff.National Alliance on Mental Illness-Charlotte, NC., TheNorm McEwen.North Texas Prostate Cancer Coalition.Nutritional Healing Center of Ann Arbor, The.OASIS of Southern California, Ovarian Awareness, Support,
Involvement and Survivorship.Oral Cancer Foundation, The.Periodic Paralysis International.Pflag Canada Regina.Prince Edward Island Cerebral Palsy Association.Prostate Cancer Support Group.Prostate Cancer Education & Support Group of Lee County.R. B. Lagatree.RSD/CRPS and Chronic Pain Support Groups of NJ and TN.Sacramento Brain Tumor Support Group, The.
Continued:
Organisations and individuals wishing to be named as participants in this2009 HSCNews annual review of patient groups view of pharma.
Respondents names are spelled as supplied by the respondents themselves.
8/14/2019 HSCNews Issue 52 February 2010
11/16
February 2010 Patient groups views of pharma
HSCNews International, 2nd annual reviewof patient groups views on pharma Page 9 PatientView 2010
San Diego City Help, Terry Brazell, MD.Shari Fiksdal.Southern Delaware Prostate Cancer Support Group.Tina Holland.USToo! Texoma and WN Jones Health Science Foundation.Wellness Community, The.Wellness Doctrine.Wendy Poage, Prostate Conditions Education Council.
Western EuropeACCION PSORIASIS.ADARA, Asociacin de Afectados de Enfermedades
Reumticas de Aragon.ADHARA, Asociacin vih/sida.ADHD Norway Troms.Ados.ADVOCACY France.AFAPAC FOUNDATION, Dr. K.A. Adanse-Pipim, Director.AFEPVI, Asociacin de Familiares y Personas con
Enfermedad Mental del Alto Vinalop.AFIBROCAT, Asociaci d'ajuda per la FIBROmialgia de
CATalunya.AFRICA POSITIVE ACTION France.AICH - Neuromed.AIDO, Associazione Italiana Donatori Organi Tessuti e
Cellule.
Aldo Sardoni, Presidente, Bianco Airone Pazienti onlus.Allan Jrgensen, Bedre Psykiatri.Allegro Fortissimo.Allergy UK.Alzheimer Gesellschaft Bremen e.V.Angst- und Panikhilfe Schweiz APhS, Marco Todesco,
President.ANVOLT, ASSOCIAZIONE NAZIONALE VOLONTARI LOTTA
CONTRO I TUMORI.APACHE.APCH, Association des Pancreatites Chroniques
Hereditaires.APDPrstata.APLL.Arcigay Bologna.
Arcigay Palermo.ARGOS 2001.Arthur J O'Hara. Snr, Chairman, Irish Sleep Apnoea Trust.ASAPME HUESCA.Asoc. Cantabra de Fibromialgia.
ASOCIACIN BIPOLAR EN CANARIAS.Asociacin Bipolares de Andaluca (ABBA).Asociacin de Fibromialgia y Sndrome de Fatiga Crnica
de Salamanca y Provincia.ASOCIACION ESPAOLA DE SNDROME DE SGREN.Associao de Doentes com Lpus.Association APEDYS Aquitaine, Association de Parents
d'Enfants DYSlexiques.ASSOCIATION DES DIABETIQUES DE COTE D'OR.Association Dyspraxique Mais Fantastique.Association for Medical and Therapeutic Self-
Determination (MeTZelf).Association Franois Aupetit.Association Francophone des glycognoses.Association Maladie Rare.Association Rgionale des Diabtiques du Poitou
Charentes.Association Spina Bifida et Handicaps Associes.Association Vivre sans Thyrode.ASSOCIAZIONE BIANCA GARAVAGLIA ONLUS.ASSOCIAZIONE DIABETICI DELLA PROVINCIA DI MILANO.ASSYMCAL, Association des Malades du Syndrome de
McCune-Albright et de Dysplasie Fibreuse des Os(Maladies Rares).
Atout-Coeur Broye.ATRACTO ASSOCIAZIONE TRAUMI CRANICI TOSCANI
ONLUS.AVAL Atlantique.
B.A.O Mlaga, Bipolares de Andalucia Oriental en Mlaga.Balans Gvle.Beaumont Trust, The.Behcets Syndrome Society.Betty Redpath, Merton Branch, MS Society.Borderline-Projekt.Bristol and Avon Chinese Women's Group.BzV der Kehlkopflosen Stuttgart e.V.Cancer Choices.Carlos Enrech.CENTER FOR LIFE.Centro Antifumo "Lunigiana senza fumo Asl1 Massa e
Carrara.CInCH.Clar ni Shionoid.Colectivo No Te Prives.Construction Workers Health Trust.Couples Contre le Sida.Cutis Laxa International.
Continued:
Organisations and individuals wishing to be named as participants in this2009 HSCNews annual review of patient groups view of pharma.
Respondents names are spelled as supplied by the respondents themselves.
8/14/2019 HSCNews Issue 52 February 2010
12/16
February 2010 Patient groups views of pharma
HSCNews International, 2nd annual reviewof patient groups views on pharma Page 10 PatientView 2010
Cyprus League Against Rheumatism.Danish Migraine Association.Danish Psoriasis Association.Danish Wilson Patient Association, The.Demensforbundet.Denise Mcauliffe.Der Crowley.Deutsche Parkinson Vereinigung Selbsthilfegruppe Moers.Deutsche Gesellschaft fr Versicherte und Patienten e.V. -
Brgerinitiative Gesundheit.Diabetikerselbsthilfegruppe-Krems.Disabled Motorists Federation, The.Doris Steenken, BPE e.V. LPEN e.V.DSB Gottschalk.DSKA, Donnersberger Selbsthilfegruppe fr
Krebserkrankte und Angehrige.DVN.Dyspraxique Mais Fantastique (DMF).East Lindsey Heart Support Group.Erklrung von Bern - Dclaration de Berne.Europa Donna Finland.European Network of Fibromyalgia Associations (ENFA).EUROPEAN SOCIAL FORUM OF CYPRUS.European Society for Phenylketonuria and allied disorders
(E.S.PKU).Eurotinnitus Association A.s.b.l.FARES.Federation Franaise de Psychothrapie et Psychanalyse
(FF2P).FEDIPSO onlus.FFGP.FFGP.Fibromyalgia Association UK.Fibromyalgie France.Finnilco/IPAA/Anniko.Finnish Prostate Cancer Association (PROPO).Finnish Turner Syndrome Association.Frauengesundheitszentrum.GADS, Grupo de Apoio e Desafio SIDA.Gniris.GFME, Glioblastome Association Michle Esnault.Greek Alliance for Rare Diseases.Groupe de Maintenance Cardio-Vasculaire Porrentruy et
env.Groupe Parkinsoniens, Ile de France,Groupement de Parkinsoniens, Ile de France.Guildford Cardiac Support Group.
Gynsam Gyncancerfreninarnas NationellaSamarbetsoganisation.
H.A.E. Belgium ASBL.Headingley Friday Support Group.Heinz Feldmeier.HELP THOSE WTH CANCER ASSOCATON (NORTH
CYPRUS).Hepatitis C Selbsthilfe Reutlingen.Herzgruppe Basel City.Herzgruppe Frutigland.Hiv-Danmark.http://argos2001;gr.Hughes, Mr R.HyperSupers TDAH France.Ing. Wilhelm Marschik.Insulin Dependent Diabetes Trust.Irish Lupus Support.Irish Mental Patients' Educational and
Representative Organisation (IMPERO).Irish Raynaud's and Scleroderma Society.J. Henderson, Alzheimer Scotland.Jamesparkisonblog.Jan Frndfors.Janssens Jozef.John Plant.JOHN WATERSON, DARLINGTON CARDIOMYOPATHY S.S.G.JUAN PEDRO BAOS JIMENEZ, PRESIDENTE DE LA
ASOCIACION ESPAOLA DE TRASPLANTADOS.
Jutta Brger-Bsing.Kate Kristiansen.Keith Cockrill, Vice-Chairman, Heartbeat East Suffolk.Kety.Kidderminster Prostate Cancer Support Group.Landsforeningen for Slagrammede.Lebertransplantierte Deutschland e.V.LHC Vstra Gtaland.LiLAC Cancer Support.LILT Sezione provinciale di Rimini.Lisbeth Mnsson Mun o Halscancerforbundet.L'organisation a t Dissoute Voici Quelques Annes.Louise Gusman, President, Multiple Sclerosis Society of
Malta.Luxembourg Diabetes Association (ALD).Manchester and District Child Poverty Action Group.Manuela Vitalini.Margrit Kubli.Marie Lane.
Continued:
Organisations and individuals wishing to be named as participants in this2009 HSCNews annual review of patient groups view of pharma.
Respondents names are spelled as supplied by the respondents themselves.
8/14/2019 HSCNews Issue 52 February 2010
13/16
February 2010 Patient groups views of pharma
HSCNews International, 2nd annual reviewof patient groups views on pharma Page 11 PatientView 2010
Continued:
Organisations and individuals wishing to be named as participants in this2009 HSCNews annual review of patient groups view of pharma.
Respondents names are spelled as supplied by the respondents themselves.
Mediapark.Migraine Trust, The.Mouth Cancer Foundation.MS Society Ireland.NASS NEWPORT.Nat Fonnesu.National Council for the Blind of Ireland.Nationale Vereniging Voor Fibromyalgie-Patienten
"Eendrachtig Sterk", F.E.S.NCF Troms.Nicosia Heart Patients Organization.North Staffs Prostate Cancer Support Group.Northampton Prostate Cancer Support Group.NPS Itali ONLUS.NVACP.NVACP, Dutch Association for Addison and Cushing
Disease.DV N.Olav Lundestad.OLIVIER plus, Franois Nocton.Orchidians, The.SPID, sterr. Selbsthilfegruppe Primrer Immundefekte,
Karin Modl.OsteoSwiss.OUCH UK.P. GAUTHIER CISS IDF.PALAU Floral.Pancyprian Heart Patients Organization.
Parent Project Onlus.Parkinson Landskrona.Parkinson Selbsthilfe Dachverband-sterreich.Pat Buckley, Lets Get Together Foundation Middleton.Patient comittee in Vestre Viken Hospital, Comittee Leader,
Jrgen Korsvik.Peggy Scholdei, Chairperson, Clare Branch, the Diabetes
Federation.Peterlee and District Heart Support Group, Colin Graham.PILAR SEZ.Pink Cross.Posithiva Gruppen.Positivo-Grupos de Apoio e Auto Ajuda.Press for Change.Prikkelbare Darm Syndroom Belangenvereniging.Privat.Pro Mente Austria.Procuratori dei Cittadini di Reggio Calabria.Prost.Prostatacancerfrbundet, Sweden.
Prostatakrebs SHG GE - Buer e.V.Reumatoide Artritis Limburg vzw.Sarcoma UK.Selbsthilfe-Bund Blasenkrebs e.V., Bernd W. Balser.Selbsthilfegruppe Fibromyalgie.Selbsthilfegruppe Diabetes Pinzgau.Selbsthilfegruppe fr PXE-Erkrankte deutschlands e.V.,
Peter Hof.Selbsthilfegruppe Prostatakrebs.Selbsthilfegruppe Prostatakrebs Frankfurt am Main.Selbsthilfeverein Wohlergehen und Gesundheit e.V.
(WoGe e.V.).Seton During.SHG Prostatakrebs Elmshorn.Social Anxiety Ireland.Speakability (Action for Dysphasic Adults).Sport fr Herzpatienten March-Hfe Wichert.Stichting ANGOB.Stichting Kernzaak.Stichting Plotsdoven.Stiftung SPO-Patientenschutz.Stiftung zur Frderung der Knochenmarktransplantation
Schweiz.Stig Eltvik.Susanne Gydesen, SLE-DK.Thorkild Bach.Thyroid UK.Tony Duffin.
Torbay Prostate Support Association (TPSA).Tourettes Action.Trigeminal Neuralgia Association UK.Tuberse Sklerose Deutschland e.V.Ulrich Bollmann, Prsident, Diabetes -Gesellschaft des
Kantons Zug.Ulrich Grosche.Umberto Iazzetta.Universit di Firenze.Ute Wallentin, Deutsche OI-Gesellschaft.VERENIGING GELARYNGECTOMEERDEN LEUVEN.VINCRE LES MALADIES LYSOSOMALES.Werkgroep Hersentumoren vzw, Study Group, Brain
Tumours Belgium.WESTMINSTER LINKS.Zelfhulpgroep Hodgkin en non-Hodgkin.Zelfhulpgroep voor Gelaryngectomeerden Limburg.Zelfhulpgroep voor Hodgkinaandoeningen West- en oost-
Vlaanderen.Zorgbelang.
8/14/2019 HSCNews Issue 52 February 2010
14/16
February 2010 Patient groups views of pharma
HSCNews International, 2nd annual reviewof patient groups views on pharma Page 12 PatientView 2010 http://twitter.com/PatientView
8/14/2019 HSCNews Issue 52 February 2010
15/16
HEALTH and SOCIAL CAMPAIGNERS NEWS INTERNATIONAL
THE WORLDS ONLY INDEPENDENT PUBLICATION THAT KEEPS YOU IN TOUCH
WITH THE OPINIONS OF HEALTH ADVOCATES
THEIR HOPES, THEIR FEARS, AND THEIR PLANS FOR THE FUTURE
MOST RECENT BACK ISSUES OF HSCNEWS
2008
Issue 41 (February 2008)
Patients as successful activists.
Issue 42 (April 2008)
Patient advocacy in Germany.
Issue 43 (June 2008)
The increasing groundswell of opinion in favour of patients rights.
Issue 44/45 (August/September 2008)
Patient perspectives on bipolar disorder.Latest data on the patient advocacy movement.
Issue 46 December 2008) Patient perspectives on the pharmaceutical industry; part 1.
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.
8/14/2019 HSCNews Issue 52 February 2010
16/16
PATIENT VIEWS OF PHARMA:
INTRODUCTION
HSCNEWS INTERNATIONAL
February 2010
PUBLISHED BY:
PATIENTVIEW
WOODHOUSE PLACE
UPPER WOODHOUSE
KNIGHTON
POWYS, LD7 1NG
UK
TEL: 0044-(0)1547-520-965
EMAIL: INFO@PATIENT-VIEWHTTP://WWW.PATIENT-VIEW.COM
Registered Address for PatientView:
Millennium Bridge House, 2 Lambeth Hill,
London, EC4 4AJ, UK