Lymphoma Coalition (LC) is a global network of worldwide not for profit lymphoma patient organisations with a vision to free the world of lymphomas. We began in 2002 with 4 countries sharing best practices and we now consist of 83 member organisations from 52 countries.
Mission: Enabling global impact by fostering a lymphoma ecosystem that ensures local change and evidence-based action.
Lymphoma Coalition, as with any other international coalition, requires funds to carry out its mission. LC welcomes corporate donations, grants and sponsorship to fund certain projects, capacity building and to enable the Coalition to grow and develop. To maintain its independence, LC has set itself the objective to balance revenues, both monies and in-kind, from these different sources; Foundations and Grants, the private sector including not-for-profit organisations and commercial corporations, both from the health and non-health sectors, and from in-kind services, such as PR/Marketing agencies and other supporters.
This document outlines LC’s policy on commercial funding and provides a set of principles that will be used to guide LC’s decisions. It does not set out to provide a definition of every possible funding opportunity. This policy will apply to all potential relations with any corporation from any industry.
This policy is framed based on the ECPC’s Funding Arrangements with Corporations, and LC’s policy on corporate sponsorship.
Purpose of this Policy
- To ensure that LC has a consistent and transparent approach to working with commercial corporations.
- To ensure the Coalition maintains its independence from commercial influences.
- To clarify LC’s position to its member organisations, commercial corporations and the wider public.
- To provide clear direction for the Coalition’s Board, Members, staff and contractors enabling them to instigate relations with commercial corporations with the full backing of the Coalition, but without the constant need for approval from its members.
LC Board Members are expected to adhere to the policy that may be revised over time as circumstances demand.
There are four different funding categories, including:
Project funding – where the Coalition will establish a collaborative partnership with a commercial corporation or funding grant to undertake a project relating to an issue of mutual interest. The following features will apply to this relationship:
- LC maintains editorial control over all materials produced in connection with the project.
- If sought, the corporation may have representation on the project steering committee.
- LC will not endorse or promote individual acknowledgement.
- The wording and/or position of the credit will be agreed in negotiations with the corporation.
- LC and the commercial partners will both benefit from the relationship
- Additional mutual benefits may be agreed on a case by case basis in discussion and agreement with CEO and Board.
Sponsorship – where a corporation funds a single activity such as a meeting or campaign. In this case the following will apply:
- The corporation has no involvement in the activity for which the sponsorship is granted.
- LC maintains editorial control over all materials or meeting programmes.
- LC will not endorse or promote the sponsor’s products or services.
- The wording and/or position of the acknowledgement are part of the sponsorship negotiations with the corporation.
- LC and the commercial partners may both benefit from the relationship.
Unrestricted grants are defined where all of the following apply:
- The corporation has no involvement in the project for which the grant is used.
- The grant will be acknowledged.
- The corporation’s logo is not used.
- LC controls the wording and position of the acknowledgement.
Financial donations and in-kind support to the Coalition
- There is no obligation on the part of the Coalition to acknowledge the support, although LC may decide to do so.
Funding: Guiding Principles
LC will foster dialogue, and establish collaborative partnerships, with the many corporations whose commercial decisions affect the chance of survival and quality of life of lymphoma patients. Patient organisation-pharmaceutical corporation partnerships are sometimes viewed with scepticism by decision-makers and the general public. Some believe that pharmaceutical corporations coerce patient organisations into conforming to their marketing agenda. In order to protect LC’s reputation and demonstrate that LC does not conform to commercial agendas, LC will adhere to the following principles when accepting or soliciting or accepting project funding, sponsorship, grants or donations from commercial corporations:
- LC will maintain an open and transparent relationship with all commercial partners.
- Before accepting funding from a commercial corporation the CEO/Board must be satisfied that:
- There are strong grounds for believing the donation, grant or sponsorship will result in benefit to the Coalition and its members.
- No adverse publicity will result from accepting the funds.
- LC will closely review all potential commercial partners’ corporate governance policies, their reputation in working with patient organisations and their environmental policies and practices. If there is any cause for concern, funds will either be accepted on a ‘no acknowledgment’ basis or the Coalition will reject the funds.
- LC will not partner with corporations to develop or promote a survey to our membership or patient community that is requested from the commercial partner.
- LC will not distribute commercially branded materials in any form to our community.
- LC will not knowingly accept any type of funding from a corporation that produces or sells tobacco brands, or receives funding from their sales.
- LC will not endorse or promote individual products or services.
- A corporation’s support will be acknowledged in an appropriate way following discussions with the corporation concerned.
- LC will sign a memorandum of understanding (MOU) with all commercial partners outlining each partner’s contribution and responsibilities. The type of agreement being reached will be clearly stated in the MOU. The commercial partner must agree to abide with the guidelines outlined in appendix 1.
- If a corporation makes any attempt to coerce the Coalition to conform to its marketing agenda, either explicitly or implicitly, or does not conform to the MOU, LC will reject the funds or terminate an on-going project.
- Where possible, LC will solicit funding from a consortia composed of two or more corporations and potentially from the same industry.
- LC will comply with all the reporting requirements agreed in the MOU and at the earliest possible time will inform the partner company if unforeseen circumstances prevent delivery of the project for any reason.
LC believes that transparency cannot be restricted to the narrow issue of transparency on funding – a necessary but not sufficient condition of transparency. Any policy on transparency should provide clear answers to the following questions: Who does the Non-Profit Organisation (NPO) represent? What is its representativeness? How is the NPO funded? Does the NPO have a track record of credible work? Does the NPO really contribute to the debate? Does it have clear written public statements on its positions?
LC believes that the transparency of an NPO lies primarily in:
- its mission and values;
- the legitimacy of its membership base;
- its governance practices;
- and its internal and public policy practices.
Consequently, the transparency of an NPO also lies in the transparency of:
- its financial information;
- the internal and external financial control by independent audits;
- the transparency of its financial relationships with funding sources, both public and private;
- the transparency of its financial relationships with commercial corporations;
- and the prevention of potential conflicts of interest, both public and private.
Where possible, LC representatives prefer to establish and maintain relationships with pharmaceutical, medical or technical representatives rather than sales or marketing staff to minimise the perception and the opportunity for any pharmaceutical company to promote their drugs.
Promotional activities related to approved prescription medicines
- All promotional activities related to approved medicines are not permitted within most current government legislation and industry codes of ethics. LC does not get involved in activities that can be possibly associated with a promotional strategy. LC always keeps in mind potential conflicts of interest and is guided by its own agenda, led by the interests of lymphoma patients.
- Types of activities that can be considered promotional:
- Disseminating unbalanced, non-validated or partial information on products, services or MDs distributed or marketed by a company;
- Being quoted in the company’s communication in favour – or against – a product;
- Participating as a speaker/attendee in a company’s product launch event;
- Participating in an ad hoc meeting sponsored by an individual company to inform;
- Agreeing that a company displays or disseminates a patient organisation’s own material on the company’s exhibition stand at any trade exhibition or scientific meeting;
- Appearing in promotional materials for a certain product or to testify as a “consumer” of that medicine. Contact information to patient organisations can be included in a separate section.
Industry Press Releases
LC refuses to be quoted in industry press releases that relate to a marketed product or a product under development. If LC feels the need to communicate to media about a product, it will issue its
own press release, independently of industry. If a company quotes LC’s opinion or refers to LC’s own communication materials without LC’s permission, LC will object to the company by registered letter (copy to the national industry association of the company).
Training Organised by Industry or a Group of Companies
LC is aware that not all themes for a potential training provided by a commercial sponsor are neutral, either about general themes or on more product related themes. It is important that the programme is sponsored by several companies, rather than a single one, and that LC’s representatives have been involved in the preparatory phase of the training programme. Generally speaking, it is preferable to find an equivalent programme run by a patient group and advisable to ask commercial companies to sponsor LC participation in the training.
Participation in Conferences or Seminars Held by Industry
If LC representatives participate in an industry event, no photo must be taken or released without prior authorisation of the person involved. To this end, arrangements in writing prior to the event are recommended. LC representatives will insist that multiple sources of information are involved in an ad hoc meeting sponsored by a single company, aimed at informing patients about their products. Information meetings without the presence of independent experts could be considered as an infringement of the Pharmaceutical Advertising Directive or industry Codes of Conduct developed by the local pharmaceutical sector.
There are several situations where industry may propose honoraria to LC representatives:
- Participation in meetings or Conferences organised by the company;
- Participation in meetings or Conferences organised by a third party;
- Reviewing industry materials, leaflets, protocols, etc.
- Advisory roles on industry policy, committees and Boards, etc.
LC will not sign an agreement or contract to act as a “consultant” to a corporation as they are not deemed an employee or consultant for any length of time. Any person representing LC – staff, contractors, Board members or volunteers, should donate any honoraria to the LC if they are called upon to represent LC retention of non-financial gifts will be negotiated with the CEO/Board on a case by case basis.
Nevertheless, LC internal policies and agreements guarantee full transparency.
GUIDELINES FOR COMMERCIAL CORPORATIONS ON WORKING WITH LC
The Coalition will not embark upon or continue with any sponsorship, grant making or collaborative venture that might damage its reputation or result in the dissemination of biased and inaccurate information to the general public, its member organisations and lymphoma patients. Therefore, when working with the Coalition, commercial corporations should adhere to the following guidelines:
- The Coalition must be consulted whenever and wherever its name is used, particularly in external communications. Approval must be sought for any copy produced which refers to a Coalition initiative supported by a commercial organisation.
- At no time can the Coalition’s logo be used without express written permission.
- At no time can press releases be issued which refer to the Coalition without our prior approval. Likewise, suggested quotes can be prepared but must always be agreed by the CEO.
- The Coalition retains a veto over all materials produced in connection with an initiative. Adequate approval time needs to be allowed for this as it may require approval from one or more Board Members or require feedback from LC’s Medical Advisory Board.
- Where more than one branded version of a product exists, any materials produced, as part of an initiative will use either the scientific name or several different brand names. It may not be practicable to mention every brand at every stage in a publication but overall the effect will be one of impartiality.
- The Coalition is happy to work with PR/advertising and marketing agencies of commercial organisations once a project is underway. However, in the first instance when a project is being planned or suggested, the Coalition requires a representative from the corporation to be present as well as the agency.
- One point of contact should be identified within the corporation and/or agency to liaise with the appropriate person in the Coalition. Clear lines of communication need to be established at an early stage with respective responsibilities and assignments agreed to ensure smooth progress with a project.
- An agreement or authorization on behalf of the LC with a member organisation outside of the LC CEO is not a valid agreement.
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