NASS recognise that the development, availability and proper use of medicines is an important part of the management of axial SpA.
It is therefore in the interests of people with axial SpA that NASS establishes effective relationships with pharmaceutical companies since the decisions they make will have a major effect on many peoples’ lives.
Any relationship with a pharmaceutical company will be underpinned by the following principles:
- Independence – The independence of NASS must not be compromised by the relationship with an external organisation or by the agreed working arrangements. The financial benefit must be made available for the support of our charitable activities without restriction. We will not allow funders to influence our campaigning, policymaking, research or fundraising for their own purposes. We will ensure our editorial independence is maintained and all information produced by NASS will be based on the latest evidence, informed by our Medical Advisory Board.
- Transparency – Any relationship with an external organisation is not an endorsement of their product or organisation and will be made transparent to our members, supporters, staff and the general public including in our annual Report and Accounts. All partnerships will be governed by a written agreement which will detail requirements and expectations from each party.
- Benefit for those living with axial SpA – Any relationship formed with an external organisation must be positive for NASS members and people living with axial SpA and in furtherance of our charitable aims.
- Regulation and good practice – All funders must comply with all relevant laws and regulations, as well as good practice. This includes full compliance with the Association of the British Pharmaceutical Industry’s Code of Practice.
- Use of NASS logo – our logo may only be used following written approval from NASS. We may use a funder’s mark where relevant to the relationship including in webinars, event banners, on our website or on press releases where appropriate. The use of a funder’s trademark will have no impact on the independence of the charity.
- Sharing expertise and knowledge – We will work with funders to share non-product expertise and knowledge. This may include participation in networking events and meetings.
- Alignment with our strategy and values – Any collaboration or cooperation with pharmaceutical companies will be assessed against the ethics, desirability and practicality in relation to the overall plans and work of NASS.
Donations will only be accepted by NASS if they are in line with our donations acceptance policy.
Our current industry funders
NASS currently has six funders from the pharmaceutical industry:
Projects funded by industry
The following projects are being funded by pharmaceutical companies in 2023:
- Act on Axial SpA: A Gold Standard Time to Diagnosis (UCB)
- Aspiring to Excellence (Abbvie, Biogen, Lilly, Novartis, UCB)
- All Party Parliamentary Group for Axial Spondyloarthritis. Funding is provided via NASS to M&F Health, who provide secretariat on NASS’s behalf. (Novartis, UCB)
- Self-Management Programme, including Your SpAce (Novartis)
- Core funding (Janssen)
Pharmaceutical funding is acknowledged on all web pages and materials developed as part of the programmes.
There are also time when ad hoc payments may be made for individual projects, such as NASS staff participating in educational events run by third parties, or recruitment to studies.
Levels of industry funding
Pharmaceutical funding currently represents 41% of NASS’s income. In 2021 NASS received £485,331 from pharmaceutical companies. Figures for 2022 will be added following the NASS AGM on 30 September 2023.
Responding to consultations on new drugs
When a new drug is developed for axial SpA and ankylosing spondylitis, NASS is invited by the National Institute for Health and Care Excellence (NICE) and the Scottish Medicines Consortium (SMC) to offer the patient perspective on the new drug.
NASS gathers the views of the axial SpA community to inform any submission with publicly open surveys. People with axial SpA, plus their friends, family and carers are invited to respond. Submissions are not solely the views of NASS.
All industry funding is openly declared on NASS submissions. All NASS submissions are published on the NICE and SMC websites.
NASS is also invited to nominate people with lived experience to give evidence at NICE and SMC committee meetings. These volunteer positions are advertised via our social media channels and e-news.