EHA's Partnership Guidelines on working with the pharmaceutical industry and other commercial entities
Relationships between the European Huntington Association (EHA) and pharmaceutical industry and other commercial entities should be based on equal partnership. Both sides must be prepared to move beyond the EHA as being passive recipients of money to a scenario where the two work together on policy development and practical initiatives, in the interests of the patients and their carers whom the EHA represents, while preserving its independence.
Each party should remember that successful partnerships are those where both partners gain something, and each should make efforts to understand the internal culture of and external pressures on the other.
EHA recognizes that pharmaceutical and other commercial companies have to be profitable, and have their own particular marketing agenda, to which EHA should ever feel obliged to conform. Funding should be rejected if the alternative is compromising the EHAs independence in any way.
The EHA encourages the use of available funding so long as the associations independence is not compromised in any way and so long as the relationship is totally transparent. Contracts between the parties help in this respect.
EHA is opposed to relationships designed to give one company competitive advantage over another, and, where possible, favours the use of funding consortia composed of two or more companies from the same industry.
Joint research initiatives must ensure that independence is not unwittingly eroded.
EHA itself accepts funding from the pharmaceutical and other industry groupings or companies when:
It believes it will result in benefit to EHA and at least some of its member organizations
The Board is satisfied that accepting the funds will not court adverse publicity
The funder does not try to coerce or over-influence EHAs policy or actions either explicitly or implicitly
A voluntary organisations good name is its most valuable asset. The effect of laws dealing with non-profit organisations, as well as agreed best practice, both preclude the exploitation of a voluntary organisations name for non-charitable purposes. EHAs name must not be used to imply approval or endorsement of any of the donors products or policies, without the Boards prior written approval.
EHA endorses no individual treatments, because people living with Huntingtons disease need the widest possible range of treatment options, to integrate them as they wish. These may include medicines, surgery, complementary therapies, lifestyle changes, and non-therapeutic products
We encourage active partnership between patient, carer and health professional as well as discussion of all available options to promote informed choice by the patient.
Where medication exists in more than one version we encourage the use, in communications with patients, of either the scientific name or the several different brand names. Publications should show impartiality.
EHA supports the proper licensing of medicines and believes that the marketing of non-drug treatments to the public requires similar rules and standards.