Relationships between the pharmaceutical industry and patients' organisationsBMJ 2003; 326 doi: https://doi.org/10.1136/bmj.326.7400.1208 (Published 29 May 2003) Cite this as: BMJ 2003;326:1208
All rapid responses
Recently I saw an article of Mr Andrew Herxheimer in BMJ Volume 326,
31 May 2003, entitled Relationships between the pharmaceutical industry
and patients’ organisations.
As Chair of the International Alliance of Patients' Organizations
(IAPO), I agree with most of Mr Herxheimer’s article. At the beginning of
the article Mr Herxheimer writes: “This article explores the position,
mainly in the United Kingdom...”. At page 1209 however, Mr Herxheimer
introduces IAPO as a prominent and highly visible international
association. This is true, but the rest of the information about IAPO is
inaccurate and unfounded. In the following I will quote some of the
statements of Mr Herxheimer and confront it with nothing else but the
Mr Herxheimer writes: “IAPO… was founded and is funded by
Pharmaceutical Partners for Better Healthcare, a consortium of about 30
Facts: The Pharmaceutical Partners for Better Healthcare (PPBH) was a
collaboration of about 40 innovative pharmaceutical companies. It existed
from 1993 until the end of 1999. IAPO was founded in 1999 by
representatives of forty patients’ organisations from many different
countries with the aim to promote the need for patient-centred healthcare,
introducing the perspective of the long-term patients into the debate.
PPBH donated unrestricted start up funding for the year 1999 only. Since
that time IAPO has survived by a variety of funding sources, including
patients’ organisations, the European Commission, in-kind funding,
foundations and unrestricted funds of a diversity of companies,
representing the pharmaceutical as well as the medical devices industry.
So, Mr Herxheimer’s statement that IAPO was founded by PPBH is
untrue, but it is true that they were involved in our initial funding. It
is untrue that IAPO is still funded by the non-existing organisation PPBH.
IAPO has faced very difficult financial times during recent years, and
this is common to the majority of patients’ organizations worldwide. We
have managed to survive, and 2003 is proving to be a year of building up
our communications and restructuring the organization to ensure a
sustainable and effective future as the global voice for patients. One
particular development that will greatly enhance our ability to
communicate both with patients’ organizations and other stakeholders is
the redevelopment of our website: www.patientsorganizations.org. This
will allow us to present clear and transparent information regarding our
structure, financing and processes and to strengthen links between
patients’ organizations worldwide.
I will not reflect on Mr Herxheimer’s feelings about the preferences
of the European Commission, for it is hard to debate feelings. However,
the following statement: “With other organisations linked to the industry,
they successfully lobbied the commission to propose allowing industry to
provide direct to consumer “information” about prescription medicines (the
European Parliament is opposing this)”, must be answered as it does not
represent the facts, but is very suggestive.
Facts: On 18 July 2001, Commissioner Erkki Liikanen, responsible for
Enterprise and the Information Society, gave a press conference in
Brussels to launch the “Commissions proposal to review EU pharmaceutical
legislation”. One of the slides was called: “Better access to information
for patients”. What Mr Liikanen said there was completely new for IAPO. I
will quote the text of Mr Liikanens slide:
• “For certain products subject to prescription
• Patient oriented and controlled information
• Not direct to Consumer Advertising type
• EU set of “Good Information Practice” to be adopted
• Pilot phase
• 3 specific groups of long term and chronic diseases: AIDS, Asthma
and chronic bronchitis, Diabetes
• Based on strong and specific patient demand
• Effects to be monitored and assessed
• To be reviewed in 5 years”
In his presentation Mr Liikanen added to this text the following:
“Still with the patient in mind, we are also introducing a pilot
system aimed to ensure the availability of better, patient-oriented and
valid information on authorised prescription drugs – for three types of
illnesses: AIDS, diabetes and asthma.
This is not direct to consumer advertising. We are not introducing of
advertising for prescription drugs.
What we want to do is, as a test case, with respect to three specific
disease groups, to make sure that validated and patient oriented
information can be made available – when this information is requested by
patients or a group of patients.”
Mr Liikanen also stated that these diseases are chosen for the
following reasons: they are long term and chronic; there is a strong and
specific demand for information; the types of drugs used are the same
throughout Europe; the results of the 5-year pilot should be relatively
easy to monitor; and people are currently forced to rely on (probably
inaccurate) information from outside Europe on the internet.
When you read the text of Mr Liikanen it is not easy to understand
why Mr Herxheimer writes “information”, suggesting that it was not about
information. In addition his suggestion that the Commission came with
this proposal as a result of our successful lobby is an overestimation of
our influence. The whole proposal, now known as “The Review 2001” was
mainly new for us and most other patients’ organisations. The proposal
itself however started a very intense debate about the pros and cons of
information direct from the industry to patients.
We heard from patient organisations often that they were in favour
and from consumer organisations that they were against it. The discussion
about better information for patients is not over now and that is a
success, but the proposal in the “Review” is passed, for five weeks ago
the Council of Ministers came with a principle agreement of common
understanding and since both the Commission and the rapporteurs in the
European Parliament accepted this, direct-to-consumer information is no
longer a part of the proposal to the Parliament. Mr Liikanen spoke about
information, yet the discussion in the parliament was about advertising,
and this was exactly the term used by most consumer organisations,
governments and every one opposing the proposal.
IAPO’s activities relating to direct-to-consumer information: Thanks
to the independent research organisation PatientView, IAPO got the
opportunity to roll out a survey of 500 patient organisations located in
all EU countries. Almost 30% of those organisations participated in the
survey, all of them in their own language. The report of this survey is
published in June 2002 under the title “Should pharmaceutical companies
provide the public with more information on prescription medicine? The
view of EU-based patient groups”.
PatientView was completely responsible for the scientific methodology
of the survey. We needed funding for the survey, but decided that no
funding would be accepted from pharmaceutical companies, the European
Commission or national governments for they all showed to have a vested
interest in the discussion. Together with the questionnaire, all patient
organisations got information about the proposal of the Commission and
about the regulation for advertising in the USA. Furthermore from the
outcomes we excluded the patient organisations with positive answers to
the question whether they were dependent for core funding from the
The survey showed a strong support to the proposal to allow
pharmaceutical companies to supply the public with significantly more
information about prescription medicine, but with a strong demand for
strict limitations. These were the answers of organisations of people with
long-term medical conditions, so exactly the group addressed by the
proposal. You see it is not so that IAPO claimed to represent patients in
many countries, we actually distributed the opinions of patient groups in
all 15 EU countries. So, with the survey to support us the position of
IAPO is as follows:
• Long-term users of medicines want more and better information,
regardless the source of the information
• The information must be strictly monitored and regulated for patients
want to be sure that they can rely on the information
• Patients want the industry to be transparent. They want to control that
all information, positive and negative, of a particular product is used
for the information to the public.
I do not know that this is what the industry wants, but I do know
that this is what the patients of the EU want and what the patients want
is what drives IAPO. We are still very grateful that PatientView gave us
this time the chance to determine the patients’ views on this issue.
I hope in view of the factual errors in Mr Herxheimer’s article, you
will correct these using the information I have provided in an upcoming
issue of the BMJ. Perhaps also you may want to consider a future article
on the issue of direct-to-consumer information in the EU?
Please do contact me if you require any clarification of the issues I
have raised, or if you need any further information about IAPO.
Competing interests: No competing interests
Editor--As a patient I know that the pharmaceutical industry helps to
finance the running of my patient organization. Thus, the annual
contribution is low and we have a glossy quarterly with a professional
editor. There is a good secreterial staff and an office and there are
subsidies for research on the disease. All this is given to the
organisation by the industry.
I am aware of the statement by Hirst (1)
that the pharmaceutical industry does not donate money to charities for
altruistic reasons. Herxheimer (2) believes that succesful partnerships
are those where both parties gain something. In my opinion a symbiosis is
difficult (but not impossible) to attain, because there is no equality of
arms. A patient organisation must be especially wary of drug trials, if
they are initiated by the company, who in the future wishes to market the
drug. Above all transparency is needed when patients of the organisation
participate in such a trial. Care must be taken that the medical adviser
of the pharmaceutical company, who may also advise the patient
organisation, is not faced with a conflict of interests. As long as there
is absolute scientific honesty, a symbiosis between the two unequal
partners should be feasable.
D.O.E.Gebhardt, a patient without competing interests,
Anna van Burenlaan 1, 2341 VE Oegstgeest, The Netherlands
1 Hirst J. Charities and patient groups should declare interests. BMJ
2003; 326: 1211
2 Herxheimer A. Relationship between the pharmaceutical industry and
patients'organisations. BMJ 2003; 326: 1208-1210
Competing interests: No competing interests
Herxheimer (1) reported and commented about relationship between
pharmaceutical companies and consumer/patient associations. It is a very
hot topic: the debate on transparency of fund raising for voluntary health
associations is far from being resolved, and consumer umbrella
associations play an increasingly important role in the discussion of
health at European level.
In Italy, at least among the hundred breast cancer associations belonging
to the Italian Forum of EUROPA DONNA (3,4), transparency of fund raising
is rarely discussed, and very few data are available. In the framework of
a survey with a standardized self-administered questionnaire on the
characteristics of breast cancer associations, sponsored in part by Komen
Italia Onlus, we collected some information on sponsorship relations. It’s
interesting to note (see table below) the different ways funds raising
handled at the individual, institutional, and company level. Most of the
funds come from individual collection, and one third of breast cancer
associations receive funds from pharmaceutical companies.
Fund raising declared by 67 breast cancer associations participating in the survey _________________________________________________________ At the individual level Annual subscription 97% Donation 89% Fund raising through public manifestations 44% At the institutional level Central government 14% Local government 74% Public institutions 6% At the company level Pharmaceutical companies 30% Commercial companies 42%
In the same survey we also asked if breast cancer associations had
prepared a document on the transparency of their relationship with a
sponsor (declaration of competing interest). Only five breast cancer
associations declared that they had done so, and among associations
sponsored by pharmaceutical companies only two prepared this document.
These data confirm the concern expressed by Herxheimer (1) and Hirst (4)
on the independence of consumer/patient associations and support the need
of more public funding for the organisations involved in the debate on
1. Herxheimer A. Relationships between the pharmaceutical industry and
patients' organisations. BMJ 2003; 326: 1208-10.
2. Mosconi P, Italian Forum Europa Donna. Consumer health information: the
role of breast cancer associations. Breast Cancer Research and Treatment
2002; 76: 89-94.
3. Mosconi P, Kodraliu G on behalf of Italian Forum of Europa Donna.
Italian Forum of Europa Donna: a survey of the breast cancer associations.
Health Expectations 1999; 2: 44-50.
4. Hirst J. Charities and patient group should declare interests (letter).
BMJ 2003; 326: 1211.
Competing interests: Fund raising declared by 67 breast cancer associations participating in the survey_________________________________________________________At the individual level Annual subscription 97% Donation 89% Fund raising through public manifestations 44%At the institutional level Central government 14% Local government 74% Public institutions 6%At the company level Pharmaceutical companies 30% Commercial companies 42%
As the UK umbrella organisation representing the interests of all
people with skin diseases and their patient groups, the Skin Care Campaign
(SCC) welcomed the balanced approach taken in last week’s BMJ: Education
and debate Relationships between the pharmaceutical industry and patients’
organisations. BMJ 326 (7400): 1208).
However, the argument that ‘where industry directly or indirectly
funds a large part of the budget … this if nothing else will influence
policies…’ is one we must contest strongly.
Resources are made available to the SCC by many organisations
including voluntary group members, and by professional organisations
(including the British Association of Dermatologists, British
Dermatological Nursing Group, Primary Care Dermatology Society and the
Royal Pharmaceutical Society of Great Britain). The majority of funding
is received from substantial number of companies –a funding consortium –
which manufacture products of value to people with skin diseases.
We and those who fund us are absolutely clear about our policy that
funds are donated with ‘no strings’ for the SCC’s campaigning and
educational work. An independent Board of Directors made up entirely of
patient representatives decides our agenda. We believe that we exemplify
a successful formula that has real integrity and works well. There is no
doubt that the Department of Health, with which we enjoy a close working
relationship, would not consult with us in the way that it does if there
was any question about our integrity.
Understandably, people often suppose that patient support groups
necessarily surrender their independence if their income derives chiefly
from one sector. In truth, patients, clinicians and the healthcare
industries all have remarkably similar objectives, albeit for rather
different reaasons. We would welcome greater recognition of the value of
industry/ patient partnerships, especially in the continuing absence of
government core funding for patient support groups.
Skin Care Campaign
Please see the text of our letter
Competing interests: No competing interests