CLDF Policy Statement:
Framework for working with the pharmaceutical industry

Background

Children’s Liver Disease Foundation (CLDF) provide information and support to those affected by childhood liver conditions and funds research in the area, and as a result we recognise the importance of collaborative relationships with stakeholders with an interest in all paediatric liver conditions including the pharmaceutical industry.

The purpose of this policy is to provide clear principles and guidance about how CLDF work with pharmaceutical companies. While CLDF believe it is important to maintain these co-operative relationships under no circumstances will these companies influence our strategic direction, activities or positions. Where possible we will not limit support to a single company to prevent accusations of undue influence on our policies. We will not give any one company exclusivity in its support for each project and service development (in line with Clause 27.4 of the ABPI Code of Practice for pharmaceutical companies).

Rationale for working with pharmaceuticals including types of funding

It can be helpful to work with the pharmaceutical companies which manufacture and market medicines for liver conditions in children. These partnerships give CLDF important information and early insight as well as providing further opportunities to raise awareness of these rare conditions and improving the quality of care for those affected. Charities may collaborate with industry in the following ways:

  • Research and development – providing patient insights and co-funding research
  • Policy and advocacy – influencing policy in the research sphere across the healthcare landscape
  • Sponsorship – industry working with charities to sponsor events such as conferences and meetings, or supporting other forms of communication (e.g. patient information, educational materials)
  • Campaigning – working together on specific campaigns or lobbying (e.g. to highlight patient need for the adoption of a new drug by the NHS)

As a charity, CLDF must raise funds on a continual basis in order to execute our charitable functions and for this reason receive funding and sponsorship from a variety of sources including pharmaceutical companies. This can be in the form of educational grants or funding for specific activities and events undertaken by CLDF. Funding from pharmaceutical companies may be received in the following ways:

  • Core funding – funding is donated as an unrestricted grant to support our ongoing projects and services
  • Donations in kind – where a company donates services or assets to support a project
  • Project funding – funding is donated to support a specific project of mutual interest and benefit to those affected by childhood liver conditions

General guidelines

  • All companies collaborating with CLDF must either be members of the Association of British Pharmaceutical Industry (ABPI) or adhere to the ABPI Code of Practice where relevant and applicable. The ABPI Code of Practice for the Pharmaceutical Industry sets out the obligations of companies when working with patient organisations.
  • CLDF is an independent organisation and no relationship will be entered into which may compromise that independence. CLDF will not promote, endorse or favour any specific product and will not allow companies to influence strategy, activities or information
  • Financial support will only be accepted where the chief executive, or appointed deputy, is satisfied that no significant damage to reputation will accrue from accepting such support. the effect that due diligence would always be part of the development of new funding relationships with pharmaceutical companies.
  • In order to remain financially independent, we do not allow the total level of funding received from the pharmaceutical industry to exceed 25% of our total annual income
  • We do not allow the funding received from an individual company to exceed 10% of our total annual income
  • Under the General Data Protection Regulation (GDPR), CLDF will not share or disclose any confidential information regarding its service users, medical professional contacts or supporters to pharmaceutical companies or their agencies unless specific consent has been provided by the contact for an approved project (or take out and ensure that all contact is through us and/or we pass on pharma details to contact – never the other way around)
  • To ensure transparency CLDF will acknowledge any work with companies in relation to specific projects through relevant media and PR work. CLDF will include the sponsors logo on all written communications associated with the project. A summary of the financial contributions from pharmaceutical companies will be reported in the annual report in line with Charity Commission procedures.
  • CLDF’s name and logo must not be used by companies or agencies without prior consultation and approval from the chief executive or appointed deputy. Use of the CLDF logo must be in line with our brand guidelines. Press releases and quotes referring to or provided by CLDF must be authorised/approved by the chief executive, appointed deputy and/or our PR and Communications Manager.

Termination

CLDF reserve the right to terminate any agreement or project where an attempt has been made to influence the charity’s strategy and activities, where the guidelines/agreement have not been adhered to, or where the continuation of the relationship may damage the charity’s reputation. In the event of a termination, funds will be returned to the company in accordance with relevant written agreements of the project.

Postholder responsible for document: Chief Executive
Policy approved: September 2020