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Written by Administrator on 23 September 2011.


This code should be read in the context of the following principles:

  • Mutual respect & integrity.
  • Transparency of relationships.
  • Independence of organisations.
  • Freedom of expression.
  • Adherence to legislative and regulatory frameworks applicable to healthcare and healthcare professionals especially those relevant to undue influence and/or corruption and/or perversity.
  • The desirability of diversification of funding sources without undue reliance on pharmaceutical companies.

Application of this Code

This Code applies to Patient Health Alliance of Non-Governmental Organisations (PHANGO) as an organisation. PHANGO encourages the wider acceptance and buy-in of this Code by its member organisations.



The patient organisations and the pharmaceutical industry often have common interests and concerns. These issues include, but are not limited to, access to healthcare, the availability of healthcare, funding mechanisms for healthcare, patient empowerment and access to information, etc. Through its research work, the pharmaceutical industry may also have specific experience and knowledge of certain disease areas. There is often a need for support for patient organisations that will enhance the objectives of the organisation in terms of empowerment of its constituents.

There is, in principle, nothing wrong with relationships that support common goals. However, such relationships have to be tailored and executed in a manner that avoids undue influence, corruption and/or perversity.

It is acknowledge that, as non-governmental and community-based organisations, many patient support and advocacy groups experience financial constraints. However, the broad funding of patient organisations from multiple sources is encouraged. PHANGO members are encouraged to be

This Code provides guidelines as to how this objective can be achieved.

Key areas relating to sponsorship of PHANGO.

  • Transparency:
    • PHANGO must provide the names of funder / sponsor / supporting organisations. Such declarations will be made in its website and other official publication and will indicate the nature of the support (e.g. assistance with arrangements, sponsorships of events, annual financial conditional or unconditional grants, expert and other human resource support, etc).
    • PHANGO will state the name of contributing organisations and the nature of the support in general and at specific events or projects.
    • Funder / sponsor / supporting organisations will be requested , in addition to points 1 and 2 disclose the names and nature of support when so requested.
    • PHANGO will indicate support from a donor organisations for specific or continuous projects or activities on the programme and/or invitation and/or publication or presentation and/or on general letterheads, email headers or footers, etc.
    • PHANGO will reduce the agreement concerning support to writing and to attach a copy of these guidelines to such agreement. Such agreement could, for example, entail details as to publicity for the supporting organisation, the nature and extent of the support, nature of interactions between the parties, dispute resolution, duration and termination, use of logo’s, etc.
  • Independence:
    • Organisations will respect each other’s independence. It is recommended that this independence be affirmed and made practical in the support agreement (e.g. that the sponsoring organisation will not dictate the operations, or ways of working of the recipient organisation, or that the sponsoring organisation will not influence the policies, programmes or activities of the recipient organisation, or that no product names or specific treatment modalities will be advanced or that speakers will be chosen, or agreed to, by the patient organisation).
    • No improper quid pro quo will be set in any programme or project, e.g. that support of PHANGO is dependent on its taking a particular stance in relation to medicines or treatment or that the PHANGO embark on a specific programme or convey a specific message which is not clearly linked to the objectives of PHANGO.
    • PHANGO believes in good corporate governance and that conditions of acceptance of any great should include, sound financial management and, if applicable, a report or verification of the achievement of the objectives of the specific project that has been supported.
    • Nothing in these guidelines should be read to prevent the sharing of resources, programmes, events or the piggy-backing of one event unto another, provided that each organisations maintains its independence in terms of its views and policies, and that the financial implications of such sharing is agreed to upfront, and in line with these guidelines.
    • Where mutual events or projects are embarked upon as joint events or projects, both organisations will have equal say in terms of the nature and extent of the event or project.
  • Integrity:
    • Support should, in principle, not result in the exploitation or abuse of the patient organisation or its constituent members.
    • Support should, in the end, benefit the patients that the organisation seeks to assist, protect and/or empower.
    • Support should not require of the organisation to relinquish any principle held dear by it and/or its members or constituent organisations.
  • Freedom of expression:
    In addition to the guidelines relating to independence, the following guidelines relate specifically to freedom of expression:
    • Where organisations share platforms, media or other means of expression, care should be taken to ensure that the views expressed by either party are not dictated to by the other. Speakers, authors and others involved should be informed accordingly. Materials published jointly should be signed off by both parties, by persons authorised to do so.
    • Any agreement that limits the expression of either party will constitute improper influence.
    • Distribution of materials by either organisation that are produced by the other is acceptable, provided that the source of the materials is recognised and, where such is provided free of charge, that it is recognised in terms of the guidelines on transparency, by both organisations. Statements relating to facts such as, that the views expressed in such material does not necessarily reflect the views of the distributing organisation, may enhance independence and freedom of expression.
    • Care should be taken to ensure that the public is clear about the roles in which persons make statements, produce information or submit comments. For example, members PHANGO must be aware of when they are speaking on behalf of PHANGO, their NGO or patient organisation or on behalf of a sponsor.
    • The guidelines relating to regulatory frameworks should not be read to prevent any organisation from expressing its views on the regulatory frameworks or lack thereof, or from lobbying for changes relating to such regulatory environments or the bodies that enforce or apply such regulatory frameworks.
    • Where organisations report on events, programmes or organisations, standard principles of good journalistic practice will be adhered to.
    • Information relating to diseases, treatment and lifestyle has to be factual, verified, balanced (i.e. include both positive and negative aspects), realistic and include references to sources used in its compilation. These sources should include credible, objective source material. It is advisable that there is an identified person to whom queries on the information provided may be directed.
    • Existing legislative and regulatory frameworks: No agreement, activity or programme, whether explicit or implicit, may amount to a breach of any existing regulatory framework or professional code of conduct, including, but not limited to:
      • The Medicines and Related Substances Act and its accompanying sets of regulations (General Regulations and Pricing Regulations); etc.
      • The Medical Schemes Act and its accompanying regulations, in particular those relating to the establishment and business of a medical scheme; etc.
      • The legislation and Codes of Conduct relating to the professions, including but not limited to those applicable to medical practitioners and pharmacists, such as the Perverse Incentives Policy and the Undesirable Business Practices Policy.
      • The Prevention and Combating of Corrupt Activities Act, that prohibits the general offence of corruption, i.e. the provision of any benefit in return for certain behaviour or influence, that amounts to behaviours that is illegal, dishonest, unauthorised, incomplete, or biased; or the misuse or abuse of power or trust.
    • Enforcement
      • Adherence to this Code is voluntary. PHANGO and its members may require that agreements and negotiations preceding agreements incorporate this Code.

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