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HSCNews issue 52

February 2010

The pharmaceutical industry in 2009


and looking to 2010
—the patient perspective

Introduction
About Parts I and II
Appendix with profiles of respondent patient groups
CONTACT DETAILS
PATIENTVIEW
HEALTH AND SOCIAL CAMPAIGNERS’ NETWORK INTERNATIONAL
Health and Social Campaigners’ News International

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February 2010 Patient groups’ views of pharma

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.

The quality of services provided by health professionals remained a prominent subject of


discussion worldwide, as did the role and rights of unpaid carers. Issues about the quality of
patient information, patient group relationships with pharma, and medical safety all surfaced
during the year.

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.

The growth of the patient movement


Patient groups continued to multiply in number and diversity during 2009, forming ever-more
potent relationships by networking and co-operation. Many have been conducting valuable
market and medical research to add impetus to their campaigns. Others have been active and
influential on the international political scene. Social media began to attract the interest of
patients and their representative patient groups worldwide.

HSCNews International, 2nd annual review of patient groups’ views on pharma Page 1
© PatientView 2010
February 2010 Patient groups’ views of pharma

About this survey 


During December 2009, HSCNews international conducted an annual online review of patient
groups’ opinions of the pharmaceutical industry. 665 patient groups from 47 countries around the
world, and with differing specialties, told HSCNews what they thought about the industry in 2009
and 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 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.

In this issue of HSCNews: Part 1 of the annual review focuses on the


overall standards of pharma’s performance in its relationships with
patient groups and with patients

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 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
© PatientView 2010
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:

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 pharmaceutical
companies could improve their performance—from the patients’ perspective—during 2010.

HSCNews International, 2nd annual review of patient groups’ views on pharma Page 3
© PatientView 2010
February 2010 Patient groups’ views of pharma

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

HSCNews International, 2nd annual review of patient groups’ views on pharma Page 4
© PatientView 2010
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%).

HSCNews International, 2nd annual review of patient groups’ views on pharma Page 5
© PatientView 2010
February 2010 Patient groups’ views of pharma

HSCNews International, 2nd annual review of patient groups’ views on pharma Page 6
© PatientView 2010
February 2010 Patient groups’ views of pharma

Organisations and individuals wishing to be named as participants in this


2009 HSCNews survey of patient groups’ view of pharma.
Respondents’ names are spelled as supplied by the respondents themselves.

Australasia Assist Prof Ljerka Cvitanovic-Sojat.


Association "Women without Osteoporosis".
Age Concern Manawatu Incorporated. Bulgarian Association for Patients' Defence.
AGSA. Cancer patient advocacy bureau in preventive medicine,
Australian Arachnoiditis Sufferers Queensland Association. Research Society "Veselibas Laboratorija".
Australian Bipolar Schizoaffective Network (ABSSN). Czech Huntington’s Disease Association.
CAHNZ Trust. Czech Initiative for Asthma.
Central Coast Family Support Service Inc. Dolnoslasaka Fundacja Transplantacji (Lower Silesia
Chronic Illness Alliance. Transplant Foundation).
Coeliac Society, The. Elizabeta Bobnar Najzer, Slovenian Heart Foundation.
Coffs Harbour District, ME/CFS/FMS Support Group. EPILEPSIJA AURA.
Darwin Prostate Cancer Support Group. Estonian Cystic Fibrosis Society.
Frank J Schaper, Alzheimers Australia, WA Ltd. ESTONIAN MULTIPLE SCLEROSIS SOCIETY.
GAIN Inc., Gynaecological Awareness Information Network. Estonian Network of PLWH.
GROW (Vic). Estonian Psoriasis Union.
Jeannie May, Founder of Living Sphere. Estonian Rheumatism Association.
Jennifer Kingston, VHL Family Alliance. Fanconi Czech Republic.
Kate Purcell. Fejer County MS Society.
Linda Lee, Consumer Consultant. Fórum Pre Pomoc Starším.
Mental Health Carers NT. GENTEST s.r.o.
Michael King. HEPTA, Organisation of citizens, “Association for Health
Myeloma Foundation of Australia Inc. Education, Prevention and improved Treatment”.
Myositis Association Australia Inc. KOLUMBUS.
National Association of People Living with HIV/AIDS Latvian Association of Kidney Patients.
(NAPWA). LATVIAN DIABETES ASSOC.
New Zealand Organisation for Rare Disorders. Lithuanian Kidney Patients' Association GYVASTIS.
ozED, Australian Ectodermal Dysplasia Support Group Inc. Lithuanian Multiple Sclerosis Union.
Peter Rutledge. Lithuanian Osteoporosis Foundation.
SFNSW. Lithuanian Society for Paediatric Gastroenterology and
Shane Therrien, Consumer Advocate Coordinator. Nutrition.
Support Group Campbelltown for Chronic Fatigue/ Meri Matijaca.
Fibromyalgia. National Alliance of Associations of Hungarian
Topo Foundation for EDUCATION. Nephropatic Patients (VORSZ).
Villa Maria. National Federation of Disabled Persons Associations
Willie Houpapa, Community Support Worker for Te Rapu (FESZT).
Ora Nelson. PARKINSON Společnost o.s.
Women's Health Action Trust. Parkinson Společnost o.s., Regionální Club Brno, Malatak.
Patients' Ombud Office, Latvia.
Polish Alzheimer's Association, The.
Eastern Europe Polish Marfan Association.
Prof Svetla Torbova, PhD, MD, President of Bulgarian
Adrian Octavian Abagiu.
Hypertension League (BHL).
AIDS Information and Support Center, AIDSi Tugikeskus.
Psoriatic and Atopic Eczema Association (SPAE.CZ).
Albanian Blind Association.
Raican Dan Antiparkinson Asociation.
Alena.
Romanian Federation of Persons with Diabetes.
ANTIAIDS Coalition.
Sergey Babin.
Antiparkinson Asociation.
Sieć PLUS.
APOHA, Association for Support PLHIV.
Simona Ene.
ARAS, Romanian Asociation Anti-AIDS, Iasi.

HSCNews International, 2nd annual review of patient groups’ views on pharma Page 7
© 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.

Slovene Federation of Pensioners' Associations. Charles (Chuck) Maack.


Slovenian Coalition for Tobacco Control. Chuck V.
Society Association HIV.LV. David Josephy.
Soteria Foundation. Diabète Trois-Rivières.
Tartu Rheumatism Assotiation. Diane Herrick.
Taurages vaiku astmos klubas. Endometriosis Research Center.
ZIVOT 90. FARF.
Halton Aphasia Centre.
Hawaii Prostate Cancer Coalition.
Latin America Help for Headaches.
Interstitial Cystitis Network.
AGALEMO, Asociación de pacientes con Leucemia, Mieloma Jeff Kapler.
y otros, Amalia y Glenn Dewey. Jim Crowe.
Alma Delia Velasco Ledesma. Joana Ramos.
Asociación de Ayuda a Pacientes Hemato-oncológicos LDA of ME.
"ASAPHE". Libby Hartigan, SHARE! the Self-Help And Recovery
ASOCIACION MEXICANA DE DIABETES EN CHIHUAHUA, Exchange.
CAPITULO CHIHUAHUA, A.C. Life Raft Group.
Asociación Mexicana de Diabetes, A.C. Loretta Brown, Chair, Alberta Chapter Osteoporosis.
Asociación Uruguaya de Alheimer y Similares. Lorna Stevens, President/Co-founder, Neutropenia
Associação de Apoio a Pacientes Portadores de GIST, Support Assoc. Inc.
TNE e Tumores Raros (AGIST). Los Angeles County Client Coalition.
Fundacion Distonia. Luz y Cambio, Maria Ostheimer.
Grupo Otimismo de Apoio ao Portador de Hepatite, Maine Coalition to Fight Prostate Cancer, Nelson A. Leavitt,
Carlos Varaldo, Presidente. President.
HERIBERTO CUEVAS L Fac Medicina UMSA. Manitoba Dystonia Support Group.
Julia Sánchez Morales. Mood Disorders Assoc of MB, Eastman Region (Judy Dunn),
Karen Bradley. as well as co-founder of AndrewDunn.org.
VOZ PRO SALUD MENTAL DF AC. Mood Disorders Association, Manitoba Parkland Office.
NAMI, EAST SAN GABRIEL VALLEY, DOLORES ENCINAS,
EX. DIR.
North America NAMI Flagstaff.
National Alliance on Mental Illness-Charlotte, NC., The
AboutFace.
Norm McEwen.
ALS Society of BC (ALS Society of Canada).
North Texas Prostate Cancer Coalition.
Alstrom Syndrome International.
Nutritional Healing Center of Ann Arbor, The.
American Cancer Society, Jersey Shore Region.
OASIS of Southern California, Ovarian Awareness, Support,
ANAC, Acoustic Neuroma Association of Canada.
Involvement and Survivorship.
Annie Appleseed Project, The.
Oral Cancer Foundation, The.
Autism/PDD Parent Group of Philadelphia.
Periodic Paralysis International.
Bill Krellner.
Pflag Canada Regina.
Bonnie L. Jones, BASS, LMT.
Prince Edward Island Cerebral Palsy Association.
Breast Cancer Network of Strength.
Prostate Cancer Support Group.
Brent Lewandoski, Alberta CTAC.
Prostate Cancer Education & Support Group of Lee County.
Canadian Breast Cancer Network.
R. B. Lagatree.
Canadian Mental Health Association, Chatham-Kent
RSD/CRPS and Chronic Pain Support Groups of NJ and TN.
Branch.
Sacramento Brain Tumor Support Group, The.
Carcinoid Neuroendocrine Tumour Society Canada.

HSCNews International, 2nd annual review of patient groups’ views on pharma Page 8
© 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.

Cyprus League Against Rheumatism. Gynsam Gyncancerföreninarnas Nationella


Danish Migraine Association. Samarbetsoganisation.
Danish Psoriasis Association. H.A.E. Belgium ASBL.
Danish Wilson Patient Association, The. Headingley Friday Support Group.
Demensforbundet. Heinz Feldmeier.
Denise Mcauliffe. HELP THOSE WİTH CANCER ASSOCİATİON (NORTH
Der Crowley. CYPRUS).
Deutsche Parkinson Vereinigung Selbsthilfegruppe Moers. Hepatitis C Selbsthilfe Reutlingen.
Deutsche Gesellschaft für Versicherte und Patienten e.V. - Herzgruppe Basel City.
Bürgerinitiative Gesundheit. Herzgruppe Frutigland.
Diabetikerselbsthilfegruppe-Krems. Hiv-Danmark.
Disabled Motorists Federation, The. http://argos2001;gr.
Doris Steenken, BPE e.V. LPEN e.V. Hughes, Mr R.
DSB Gottschalk. HyperSupers TDAH France.
DSKA, Donnersberger Selbsthilfegruppe für Ing. Wilhelm Marschik.
Krebserkrankte und Angehörige. Insulin Dependent Diabetes Trust.
DVN. Irish Lupus Support.
Dyspraxique Mais Fantastique (DMF). Irish Mental Patients' Educational and
East Lindsey Heart Support Group. Representative Organisation (IMPERO).
Erklärung von Bern - Déclaration de Berne. Irish Raynaud's and Scleroderma Society.
Europa Donna Finland. J. Henderson, Alzheimer Scotland.
European Network of Fibromyalgia Associations (ENFA). Jamesparkisonblog.
EUROPEAN SOCIAL FORUM OF CYPRUS. Jan Frändfors.
European Society for Phenylketonuria and allied disorders Janssens Jozef.
(E.S.PKU). John Plant.
Eurotinnitus Association A.s.b.l. JOHN WATERSON, DARLINGTON CARDIOMYOPATHY S.S.G.
FARES. JUAN PEDRO BAÑOS JIMENEZ, PRESIDENTE DE LA
Federation Française de Psychothérapie et Psychanalyse ASOCIACION ESPAÑOLA DE TRASPLANTADOS.
(FF2P). Jutta Bürger-Büsing.
FEDIPSO onlus. Kate Kristiansen.
FFGP. Keith Cockrill, Vice-Chairman, Heartbeat East Suffolk.
FFGP. Kety.
Fibromyalgia Association UK. Kidderminster Prostate Cancer Support Group.
Fibromyalgie France. Landsforeningen for Slagrammede.
Finnilco/IPAA/Anniko. Lebertransplantierte Deutschland e.V.
Finnish Prostate Cancer Association (PROPO). LHC Västra Götaland.
Finnish Turner Syndrome Association. LiLAC Cancer Support.
Frauengesundheitszentrum. LILT Sezione provinciale di Rimini.
GADS, Grupo de Apoio e Desafio à SIDA. Lisbeth Månsson Mun o Halscancerforbundet.
Gêniris. L'organisation a été Dissoute Voici Quelques Années.
GFME, Glioblastome Association Michèle Esnault. Louise Gusman, President, Multiple Sclerosis Society of
Greek Alliance for Rare Diseases. Malta.
Groupe de Maintenance Cardio-Vasculaire Porrentruy et Luxembourg Diabetes Association (ALD).
env. Manchester and District Child Poverty Action Group.
Groupe Parkinsoniens, Ile de France, Manuela Vitalini.
Groupement de Parkinsoniens, Ile de France. Margrit Kubli.
Guildford Cardiac Support Group. Marie Lane.

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.

Mediapark. Prostatakrebs SHG GE - Buer e.V.


Migraine Trust, The. Reumatoide Artritis Limburg vzw.
Mouth Cancer Foundation. Sarcoma UK.
MS Society Ireland. Selbsthilfe-Bund Blasenkrebs e.V., Bernd W. Balser.
NASS NEWPORT. Selbsthilfegruppe Fibromyalgie.
Nat Fonnesu. Selbsthilfegruppe Diabetes Pinzgau.
National Council for the Blind of Ireland. Selbsthilfegruppe für PXE-Erkrankte deutschlands e.V.,
Nationale Vereniging Voor Fibromyalgie-Patienten Peter Hof.
"Eendrachtig Sterk", F.E.S. Selbsthilfegruppe Prostatakrebs.
NCF Tromsø. Selbsthilfegruppe Prostatakrebs Frankfurt am Main.
Nicosia Heart Patients Organization. Selbsthilfeverein Wohlergehen und Gesundheit e.V.
North Staffs Prostate Cancer Support Group. (WoGe e.V.).
Northampton Prostate Cancer Support Group. Seton During.
NPS Itali ONLUS. SHG Prostatakrebs Elmshorn.
NVACP. Social Anxiety Ireland.
NVACP, Dutch Association for Addison and Cushing Speakability (Action for Dysphasic Adults).
Disease. Sport für Herzpatienten March-Höfe Wichert.
ÖDV NÖ. Stichting ANGOB.
Olav Lundestad. Stichting Kernzaak.
OLIVIER plus, François Nocton. Stichting Plotsdoven.
Orchidians, The. Stiftung SPO-Patientenschutz.
ÖSPID, Österr. Selbsthilfegruppe Primärer Immundefekte, Stiftung zur Förderung der Knochenmarktransplantation
Karin Modl. Schweiz.
OsteoSwiss. Stig Eltvik.
OUCH UK. Susanne Gydesen, SLE-DK.
P. GAUTHIER CISS IDF. Thorkild Bach.
PALAU Floréal. Thyroid UK.
Pancyprian Heart Patients Organization. Tony Duffin.
Parent Project Onlus. Torbay Prostate Support Association (TPSA).
Parkinson Landskrona. Tourettes Action.
Parkinson Selbsthilfe Dachverband-Österreich. Trigeminal Neuralgia Association UK.
Pat Buckley, Lets Get Together Foundation Middleton. Tuberöse Sklerose Deutschland e.V.
Patient comittee in Vestre Viken Hospital, Comittee Leader, Ulrich Bollmann, Präsident, Diabetes -Gesellschaft des
Jørgen Korsvik. Kantons Zug.
Peggy Scholdei, Chairperson, Clare Branch, the Diabetes Ulrich Grosche.
Federation. Umberto Iazzetta.
Peterlee and District Heart Support Group, Colin Graham. Università di Firenze.
PILAR SÁEZ. Ute Wallentin, Deutsche OI-Gesellschaft.
Pink Cross. VERENIGING GELARYNGECTOMEERDEN LEUVEN.
Posithiva Gruppen. VINCRE LES MALADIES LYSOSOMALES.
Positivo-Grupos de Apoio e Auto Ajuda. Werkgroep Hersentumoren vzw, Study Group, Brain
Press for Change. Tumours Belgium.
Prikkelbare Darm Syndroom Belangenvereniging. WESTMINSTER LINKS.
Privat. Zelfhulpgroep Hodgkin en non-Hodgkin.
Pro Mente Austria. Zelfhulpgroep voor Gelaryngectomeerden Limburg.
Procuratori dei Cittadini di Reggio Calabria. Zelfhulpgroep voor Hodgkinaandoeningen West- en oost-
ProÖst. Vlaanderen.
Prostatacancerförbundet, Sweden. Zorgbelang.

HSCNews International, 2nd annual review of patient groups’ views on pharma Page 11
© PatientView 2010
February 2010 Patient groups’ views of pharma

HSCNews International, 2nd annual review of patient groups’ views on pharma Page 12
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MOST RECENT BACK ISSUES OF HSCNEWS

2008

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Issue 42 (April 2008)


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Issue 43 (June 2008)


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Issue 44/45 (August/September 2008)


√ Patient perspectives on bipolar disorder.
Latest data on the patient advocacy movement.

Issue 46 December 2008)


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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)
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Issue 51 (November)
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obstacles and opportunities. Interviews with six Italian patient groups.
PATIENT VIEWS OF PHARMA:
INTRODUCTION
HSCNEWS INTERNATIONAL
February 2010

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