How do we get the people holding the purse strings to view rheumatic diseases as important?
Rheumatic and musculoskeletal conditions have long been the neglected middle sibling of the health world.
Despite being incredibly prevalent, they don’t get the same amount of funding, research or awareness-raising as cancer, cardiovascular disease or diabetes.
At an advocacy-themed session on day one of the 2023 EULAR congress, experts presented three novel ideas to heat up the RMD public relations campaign.
Tactic one: learn politician-ese
Antonella Cardone, Cancer Patients Europe
For Antonella Cardone, CEO of an umbrella organisation representing cancer patients across Europe, translating research into terms that are tangible to policy makers is one of the key tools in her belt.
“What I mean by this – and this is very, very important – is that there might be policymakers at different levels in different roles, interested in some specific key messages and not in others,” she said.
“It is important that if we go to speak with the Minister of Labour, we speak their language and we mention the key facts that the Minister of Labour is interested in, which are completely different from the key messages of interest to the Minister of Health or the Minister of Social Affairs.”
According to Ms Cardone, shining a light on the impacts of certain diseases beyond the individual illness – for example, the effects on workforce, mental health or hospital waiting times – is a powerful bargaining chip.
“We work with not only the Minister of Health but also Ministers of Social Affairs, Labour and Finance,” she told EULAR delegates.
“Because cancer is a chronic condition, cancer survivors require rehabilitation and reintegration into work, so this is why we need to work with these [different] ministers.”
Anyone working to raise the profile of RMDs, Ms Cardone said, would do well to start working with labour and workforce ministries.
Tactic two: Broader is better
Professor Anthony Woolf, Arthritis and Musculoskeletal Alliance
A more creative approach to getting RMDs to the top of the political (and funding) agenda, according to Arthritis and Musculoskeletal Alliance chair Professor Anthony Woolf, is to bundle together musculoskeletal conditions of every kind.
He sees the real challenge not as convincing politicians to care about rheumatic diseases, but convincing the pen-pushers and bean counters behind every politician that rheumatic diseases affect a large enough swathe of the population to make action worthwhile.
This entails presenting the data in a new way.
Instead of smaller groups focussing on trying to draw attention to just hand osteoarthritis or just juvenile idiopathic arthritis, Professor Woolf believes that uniting around the cause of musculoskeletal conditions will bring a sort of power in numbers.
“We’re thinking about anything which affects someone’s physical condition,” he told congress delegates.
“Generally, painful musculoskeletal conditions – be it diseases and developmental problems or injuries and accidents, even road traffic accidents – [can be grouped] because, from the person’s point of view, they have a similar outcome of painful limitation of motion.”
When viewed in terms of the global burden of disease in disability-adjusted life years, data from the US-based Institute for Health Metrics and Evaluation does lend weight to Professor Woolf’s argument.
“If we look at the disability burden across Europe, MSK is at the top at almost 20%, and if we look at the conditions, that is due to lower back pain, falls – because the long-term outcome of falls is usually musculoskeletal – osteoarthritis, neck pain and other musculoskeletal conditions,” he said.
“Although we hear a lot about mental health and the importance of mental health, you can see that it is less prevalent than back pain.”
Tactic three: make it visible
Professor Tadej Avcin, Paediatric Rheumatology Europe Society
By definition, all paediatric rheumatic diseases are rare, presenting a challenge for researchers in the competitive funding field.
“The European Reference Network for rare immunological disorders, RITA, includes rare immune deficiencies, paediatric rheumatic diseases, auto inflammatory diseases, vasculitis and rare neuro-inflammatory diseases,” Paediatric Rheumatology Europe Society secretary Professor Tadej Avcin said.
“If I would be a member of parliament I would ask, ‘What did you say?’.
“We are competing against cancer.”
Lack of visibility is one of the key things that he sees as holding back the field.
Professor Avcin advocates for better public awareness of rheumatic diseases – ideally, he said, children would learn about RMDs at school.
“[One of my patients] had a very difficult disease course, and she said that she felt like she had an invisible disease,” he told delegates.
“In general, she said that nobody was as affectionate as they may be toward a child who loses his care when he undergoes chemotherapy for cancer.”
Making this pain visible, he said, could be the key to winning widespread public support for RMDs.
EULAR 2023 ran from 31 May to 3 June in Milan, Italy.
