Policy and Principles for Working with Pharmaceutical Companies

1. Purpose of Report

To detail our policy and principles for governing our relationships with pharmaceutical companies.

2. Background

2.1. is a community for young people affected by multiple sclerosis (“MS”). It is a social network run by its users where young MSers meet, share their experiences and support each other.

2.2. values and protects its reputation for reliability, independence and impartiality. It is therefore important that we have a formal policy which governs the nature of our relationships with pharmaceutical companies with an interest in MS drugs and treatments.

2.3. We plan to work with a wide range of pharmaceutical companies with an interest in developing drugs and treatments for people with MS, whilst maintaining our independence. It is important that wherever possible, we maintain positive relationships with such companies, in order to enable us to promote the interests of current and future patients. We plan to have relationships with a number of companies and not to be reliant on any single company.

3. Policy on Relationships with Pharmaceutical Companies

3.1. works to improve the lives of people with MS.

3.2. We welcome the creation of new MS drugs and treatments and believe it is in the interests of people with MS that such treatments are developed. We will build partnerships with pharmaceutical companies involved in developing MS drugs and treatments whilst remaining independent and impartial, so that patients receive the best possible treatments and that their voices are clearly understood and heard.

3.3. Our mission is to improve the lives of people with MS, and this will be our only consideration in our relationships with pharmaceutical companies. We will not do anything which prejudices the interests of people with MS and we will withdraw from any relationship, sponsorship, or initiative which we believe to be against patient interests, or which prejudices our mission, independence or damages our reputation.

4. Principles for Relationships with Pharmaceutical Companies

4.1. Promoting the Patient Interest – We are strongly committed to ensuring that people with MS have access to the most effective and up-to-date treatments available. We recognise that patient groups and pharmaceutical companies can have shared interests.

4.2. Ensuring Independence – will not enter into a relationship designed to give a pharmaceutical company a competitive advantage over another, and, where possible, we favour the use of funding consortia based on two or more companies working together.

4.3. Equality in Partnership – Relationships between and individual pharmaceutical companies will be relationships between equals. We will not accept a subordinate role.

4.4. Mutual Benefit – and the relevant pharmaceutical company will recognise that the partnership must deliver benefits for both partners. Each party will seek to understand the objectives, culture and external pressures on the other. will only enter into partnerships where our independence is not compromised.

5. Guidelines for Joint Working

5.1. will retain full editorial control over all publications and printed materials sponsored by a pharmaceutical company or companies and will maintain copyright as well as moral rights.

5.2. must be consulted wherever and whenever its name is used, for both internal and external communications. Approval from must be sought and obtained for any copy produced which refers to a initiative supported by a pharmaceutical company.

5.3.’s logo must not be used by companies without prior written approval.

5.4. Press releases must not be issued which refer to without the charity’s prior approval. Suggested quotes may be drafted but must not be used without agreement from either’s co-founder George Pepper or a designated trustee.

5.5. When working on a joint initiative, a single point of contact will be identified within the company concerned to liaise with a named contact at

5.6. will work with PR, advertising and marketing agencies employed by pharmaceutical companies once a joint project is under way. However, during the planning stage of such a project, requires a representative from the company to be present as well as the agency.

5.7. will keep companies regularly informed as reasonably required of the progress of the initiative they are supporting.

6. Product Endorsement

6.1. supports the availability of the widest possible range of effective drugs and treatments.

6.2. does not and will not promote or recommend individual treatments, as this is a matter for discussion between the patient and their medical advisor. We believe that people with MS should have the widest possible range of drugs and treatment options available and the ability to use them as they wish.

6.3. will encourage active partnership between patients and health professionals and the discussion of all available options, in the interests of informed choice on the part of the patient.

7. Association of the British Pharmaceutical Industry Code of Practice

7.1. welcomes the ABPI Code of Practice and will work within it.

7.2. Written agreements will be produced for each substantial relationship between and a pharmaceutical company. In addition, project agreements will set out details of specific joint initiatives.

8. Publication of Support from Pharmaceutical Companies

8.1. will publish audited figures on its website of any support from a pharmaceutical company received over the previous financial year equivalent to £1,000 or more. With this commitment we aim to meet the recommendations of the Health Select Committee report “The Influence of the Pharmaceutical Industry” published in 2005. We will also abide by any relevant guidance from the Institute of Fundraising.