Written agreements - there must be a written agreement between each party.
Equal partnership - both sides must be prepared to move beyond being a passive donor or recipient of money to working together on practical initiatives to promote the best interests of patients.
Diversified funding - Amgen encourages external organisations to diversify their funding so that one company is not the dominant source of funding. In addition, any unsolicited requests for funding from an external organisation must go through a rigorous internal approval process.
Maintain external organisations' independence - Amgen will not attempt to oblige external groups to conform to a particular agenda in exchange for funding.
Transparency - company funding and/or sponsorship of external groups' initiatives must be made public and explicit.
Responsibility for Patient Group Relationships
Relationships with patient groups are the responsibility of Amgen's Corporate Affairs department and any unsolicited requests for support from patient groups are also considered by this department.
Transparency of Patient Group Relationships
The ABPI & IPHA Codes of Practice, self-regulatory systems for the pharmaceutical industry, require that details of pharmaceutical company funding of patient and user groups are published. Amgen publishes details on this website of all funding provided. Each activity or item of material produced as a result of a funded relationship between a patient group and Amgen will feature a prominent notice of Amgen's involvement. The only exception is where Amgen provides core funding, which the patient group uses without reference to Amgen e.g. buying office supplies, contribution to salaries, patient literature. Patient advocacy and user groups may also decide to publish details of pharmaceutical company funding. This information should make clear the nature of Amgen's involvement with patient groups.
Amgen uses the following words on the website to describe the different ways in which we work with patient groups:
"Core funding" means that Amgen is providing money to a patient group to support the human and physical resources needed to run the organisation and/or any activity that the patient group decides to carry out without reference to Amgen, which might include materials and activities.
"Sponsorship funding" refers to grants provided for specific purposes. Amgen does not have editorial input into written materials produced by patient organisations.
"Partnership funding" means that Amgen has input into the materials and/or activities.
"Consultancy fee" is where Amgen pays a patient group for services, such as reviewing materials intended for patient use.
Descriptions of Amgen's Patient Group Relationships
Amgen UK & Ireland is committed to partnering with patient groups for the benefit of patients and in a way that is true to the Industry Codes of Practice and Amgen's policy. Amgen has agreed with patient groups that it will make public the scope of our partnerships in the UK & Ireland in order to increase transparency. This includes stating the amount of funding that Amgen provides.
Founded in 1961, Kidney Research UK is the leading UK charity funding research that focuses on prevention, treatment and management of kidney disease. The charity also dedicates its work to improving patient care and awareness of kidney disease.
Amgen has provided partnership funding for a pilot study of the Kidney Early Evaluation Project (KEEP) in the UK in 2008, aiming to identify patients with undiagnosed chronic kidney disease (CKD) through education, awareness and screening in the community. £130,000 (December 2007)
Prostate Cancer Research Foundation
The Prostate Cancer Reseach Foundation (PCRF) was founded in 1993 to find better treatments and a cure for recurrent prostate cancer. The PCRF has two aims, the first to promote independent worldwide research into all aspects of prostate cancer; and the second to spread the crucial knowledge gathered from that research as far afield as possible, via internationally recognised forum, attended by the world’s top prostate cancer experts.
Their objectives are as follows:
To fund research that helps to find the cure or cures of prostate cancer.
To fund research that contributes towards finding the cause or causes.
To fund the best quality research.
To fund research that offers better outcomes to men that are diagnosed with prostate cancer.
To enable prostate cancer specialists to share information on a regular basis.
Amgen has provided sponsorship funding towards the cost of the biennial Scientific Forum (Prostate Cancer Forum). £1,000 (May 2008)
Beating Bowel Cancer is a leading UK charity for bowel cancer patients, working to raise awareness of the symptoms, promote early diagnosis and encourage open access to treatment choice for those affected by bowel cancer. Through their work they aim to save lives from this common cancer.
The charity was founded in 1999 and is based in Teddington, Middlesex. They work hard to improve bowel cancer awareness amongst both the medical profession and the general public. The charity provides authoritative information about the disease, its symptoms, what to do if diagnosed, and what treatment choices are available. They encourage people to communicate frankly about all aspects of this disease, and not to be embarrassed to talk about bottoms and bowels!
Amgen has provided sponsorship funding to support the Patient Voices Group (£10,000), £3,000 to update Information booklets, £6,000 for a new Campaigning Pack and £6,000 for a new Prevention and Early Diagnosis booklet. (July 2008).The ITP Support Association is a UK registered charity which aims to promote and improve the general welfare of patients, and the families of patients, with Immune (Idiopathic) Thrombocytopenic Purpura by providing:
Patient/parental/antenatal helpline support
A telephone contact and e-mail network with other sufferers/parents
An information pack
Quarterly newsletter
Easy to read booklets and fact sheets on ITP and associated interests
Advice on referrals
Guidelines for schools
Protocol for dentists of affected patients
Guidelines on management of ITP for paediatricians
Annual conventions featuring leading ITP specialists. Information on past conventions
CDs of lectures by ITP specialists
Amgen has provided sponsorship funding towards the costs associated with the ITP Patient Convention (£800) and a contribution towards the production costs of the ITP Newsletter (£1,380). (September 2008)
Bowel Cancer UK aims to save lives by raising awareness of bowel cancer, campaigning for best treatment and care and providing practical support and advice.
Amgen provided sponsorship funding towards updating the Patient Campaigning Pack (£15,000), and also provided partnership funding of £10,000 to organise and run an Advisory Board. (October 2008)
The Patients Association was set up more than 40 years ago to promote the voice of patients in healthcare. They are a registered charity based in North London staffed by paid and unpaid staff committed to making a difference to the 'Patient Journey'. They offer patients an opportunity to share their experiences of health services and use the knowledge gained from patients to work with the NHS and other healthcare providers in improving services.
Working with a range of organisations providing health services they receive income through individual members, corporate members in the commercial sector, specific project work, consultations and events. They are an entirely independent organisation and do not receive any funding from the Department of Health or any other government body.
Amgen provided £10,000 for coalition work in the areas of osteoporosis, nephrology, biotechnology and innovation work. Also to support their infrastructure and their ability to deliver their objectives. (October 2008)
The NKF is the national charity in the UK - Run by Kidney Patients for Kidney Patients. The Federation's aim throughout the UK is to promote both the best renal medical practice and treatment, and the health of persons suffering from Chronic Kidney Disease (CKD) or Established Renal Failure (ERF).
Amgen provided core funding for 2008 in February 2008 (£21,000) and for 2009 in December 2008 (£21,500) which included funding for two specific projects; development of a website zone within the NKF website to enable patients to submit electronic feedback forms to the NKF (2008) and distribution of a range of patient surveys, including a study into anaemia (2009)
The National Osteoporosis Society is the only UK charity dedicated to improving the diagnosis, prevention and treatment of osteoporosis.
The charity was established in 1986 and has since grown into a well respected national charity with approximately 25,000 members and over 50 members of staff.
Amgen has provided sponsorship funding (£15,000 in December 2008) for membership of the Industry Partners Forum for 2009 and towards their Nurses Helpline Service, developing information services (including website development), education and awareness-raising initiatives and medical and scientific research.
