The emerging advocacy landscape for IgG4-related disease: an advocate’s quest to build a new patient organisation
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Patient-advocate Ilaria Galetti knows full well the challenges that come with living with a rare disease. When Ilaria learned that people with immunoglobulin G4-related disease (IgG4-RD) had no national organisations to support them, she began a determined effort to form a pan-European advocacy group that would make their collective voice heard by policymakers
Written by Geoff Case, digital editor, RARE Revolution Magazine
Interview with Ilaria Galetti, patient advocate
Since 1996, Ilaria Galetti has lived with a condition called systemic sclerosis. This affects her autoimmune system and causes problems with her skin, joints, internal organs (mainly her lungs, gastrointestinal tract and heart) and her blood vessels. For many years, Ilaria has led GILS (Gruppo Italiano per la Lotta alla Sclerodermia) and FESCA (the Federation of European Systemic Sclerosis Associations). She has also been an ePAG (European patient advocacy group) representative for her disease within ERN ReCONNET since 2017.
ERN ReCONNET: The European Reference Network on rare and complex connective tissue and musculoskeletal diseases currently covers 10 diseases affecting the muscles, skeleton or connective tissue. The purpose of the group is to improve the management of these diseases across the European Union.
As a patient living with a rare condition and as an advocacy group leader, Ilaria is acutely aware of the difficulties that people with rare diseases face. She believes that the levels of unmet need may be even higher for those living with immunoglobulin G4-related disease (IgG4-RD) because it was only recently recognised as a separate condition, and there are no national or European organisations for them. Currently, therefore, these patients have no representation within ERN ReCONNET and their voices are not being heard by clinicians and policymakers.
To address this, Ilaria has been searching for people living with IgG4-RD since 2017, “chasing clinicians everywhere”, with the idea of starting a pan-European patient group for them—the low number of patients with the condition makes this approach more practical than starting a national group. She is determined to give these patients a voice. “They really need someone who speaks loud for their rights to get better management of the disease, to shape patient care pathways, or to improve the research through the use of patient outcome measures.”
“I understand IgG4-related disease is not my disease and I do not represent these patients, but I do represent rare disease patients. We are a big family, and we try to support each other.”
Once she has brought a group together, Ilaria would like to find people within it to represent the community’s collective voice with ERN ReCONNET, so it can be heard by clinicians and policymakers. “ePAGS are all endorsed by a patient organisation, so that they represent their whole community and not just themselves,” she explains.
At the first ERN ReCONNET congress in Brussels in April 2023, Ilaria met with Horizon Therapeutics and TREND Community to discuss her advocacy work in IgG4-RD, and she introduced them to Dr Emanuel Della Torre, an Italian doctor treating many people with the condition. It was an exciting moment for Ilaria: the prospect of forming a patient group suddenly seemed much closer. “The stars were in our eyes,” she says. “Finally, it felt that together we could start to do something for this community which is not yet represented in Europe.” All parties—Horizon, TREND, Emanuel and Ilaria agreed to work together to convene a national symposium for Italian patients later in 2023.
Thanks to the logistical arrangements made by Horizon and TREND and to the introductions Emanuel has been able to make, a pilot meeting is scheduled for 7 October in Milan. In attendance will be doctors with expertise in treating IgG4-RD and, hopefully, “one or two policymakers, too, because they make all the difference”. Ilaria also hopes she will find a patient or two who is interested in representing the community at the European level and undertaking training to help them do that.
Before the pilot meeting there will be a survey to capture the most pressing unmet needs for Italian patients living with IgG4-RD. In the afternoon of 7 October, the findings will be discussed in breakout rooms. Later, there will be a plenary session to bring together participants’ thoughts on this topic.
Ilaria does not yet know which other discussion topics will arise, but one discussion point may be how men will respond to their diagnosis of IgG4-RD. Overall, the disease affects far more men than women,1 but she is worried that some men may not seek medical help promptly because of social barriers.2 In her experience, some men even “feel shame at being ill”.
She also wonders whether the group will discuss gastrointestinal symptoms, which, she believes, are so often taboo or misunderstood. “Maybe they think, ‘Oh, I ate too much’, or ‘I ate the wrong thing’, but actually there may be an underlying problem.”
Ilaria is confident in predicting that one of the other main discussion points will be how immunologists, rheumatologists and gastroenterologists need to understand the importance of working together to treat the disease. But for now, she is excited to hear what the patients themselves will say in October.
A second meeting in Berlin, where there is another doctor with substantial interest and experience in the condition, is also being planned. This will give the patients a valuable opportunity to discuss their unmet needs further and help to create the pan-European network Ilaria envisages for the group.
“Being in, and leading organisations, national and European, helps me to understand that other people have been through difficult situations. When we put all our strength together, we can succeed.”
Looking to the future, Ilaria is keen to see a patient group emerge for IgG4-RD that builds constructive and transparent relationships with the pharmaceutical industry and healthcare professionals. The best structure for that, in her view, is having a board that consists solely of patients and caregivers. This will ensure that it is the people with lived experience of the disease who set the agenda.
“When patients represent the disease, on advisory boards for example, they must be able to say ‘no’ if they feel a request is not okay for their community.”
With new patient groups being so reliant on the work of volunteers—in the early days at least, Ilaria stresses the need for pharmaceutical companies to commit to supporting patient groups in the longer term. However, the independence of patient groups must also be maintained, she believes. And this is especially important in respect of patients’ data. Ilaria firmly believes that data about the natural history of the disease belong to the patients and that any registry of that data should not be the intellectual property of any particular company.
If the group’s patient representatives are to assert the group’s needs confidently within ERN ReCONNET, they will need training to understand the complex research landscape. With this in place they will, for example, be better able to engage with clinical trial design, to advocate for access to treatments, and to press for transparency in the way pharmaceutical companies report their clinical trials—even if a trial is unsuccessful. “There is so much useful information there,” she says.
Thankfully, with Ilaria’s strong vision, her determination and the commitment of clinicians and industry, the prospect of a European patient advocacy group for IgG4-RD looks set to become a reality, and the voices of patients will soon be better heard.
Editor’s note: The first patient meeting took place, as scheduled, on 7 October 2023, after this article was written.
References
[1] Floreani A, Okazaki K, Uchida K, Gershwin ME. IgG4-related disease: Changing epidemiology and new thoughts on a multisystem disease. J Transl Autoimmun. 2020;4:100074. Published 2020 Dec 19. doi:10.1016/j.jtauto.2020.100074
[2] The Lancet. Raising the profile of men’s health. The Lancet. 2019;394(10211):1779. doi:10.1016/S0140-6736(19)32759-X
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