The invisible disease: our commitment to break the stigma and give patients with chronic inflammatory conditions a voice

December 2021

The invisible disease: our commitment to break the stigma and give patients with chronic inflammatory conditions a voice

By Emma Chaffin, Vice President, Country Head, Galapagos UK/Ireland

Have you ever seen someone nip into a disabled parking spot and walk smoothly into the shops – apparently fine? Or jump the queue to the nearest disabled toilet – not a crutch or wheelchair in sight? Well, think twice before judging because not all disabilities are immediately obvious.

Take the 400,000 people in the UK who live with rheumatoid arthritis (RA).[1] Often mistaken for a disease that affects older people, RA commonly strikes in early adulthood and is a life-long, progressive disease.[2] It can affect multiple organs as well as joints and can cause ‘invisible’ symptoms such as weakness and fatigue as well as the more well-known symptoms of joint stiffness and pain,[3] meaning the full impact of the disease on day to day life can sometimes be underestimated by friends, family and employers.

Or think of the more than 300,000 people in the UK who live with inflammatory bowel disease (IBD), including Crohn’s disease (CD) and ulcerative colitis (UC).[4] Many people with these diseases live in constant dread of experiencing faecal urgency or incontinence,[5] making car journeys or day trips an intimidating prospect for some. In recognition of this, the patient advocacy organisation Crohn’s and Colitis UK (CCUK) has campaigned for people with CD and UC to qualify for the government Blue Badge Scheme and also provides all members with pocket-size ‘Can’t Wait’ Cards, which make it easier for people to use toilets in shops, restaurants and other buildings without having to explain their condition.

In a world of countless competing priorities, patient advocacy groups (PAGs) play a vital role in advocating for the rights and needs of patients. This is why, earlier this month, we were proud to support Crohn’s and Colitis Awareness Week (1st-7th December), an initiative from CCUK which encourages people living with these conditions – and those involved in research, care and support – to share their stories. We are also proud to partner with the National Rheumatoid Arthritis Society (NRAS) on the We R. A. Priority (WRAP) campaign, which aims to throw light on the complexities and realities of living with RA for people of all ages.

Breaking the stigma

On 3rd December, we celebrated United Nations International Day of Persons with Disabilities: a day dedicated to raising awareness of the experiences of people with disabilities and promoting their rights and wellbeing. The team at Galapagos UK was honoured to have a person with rheumatoid arthritis (RA) share her experience of living with a disease that can cause ‘invisible’ symptoms and is often heavily misunderstood.

Aside from the physical, social and emotional impacts of IBD and RA, people with these conditions can sometimes face discrimination or even be challenged on their use of disabled facilities, such as public toilets, parking spaces and priority seats on public transport. This needs to change, particularly when we consider that, of the roughly 14 million people in the UK living with a disability,[6] an estimated 70% of these disabilities are ‘invisible’.[7]

According to CCUK, 81% of respondents felt that the public had limited or no understanding of CD or UC.[8] This lack of understanding and empathy can lead to stigma which, in turn, contributes to making those living with chronic conditions feel alienated and unsupported. It is therefore critical that we continue to support campaigns that give patients a voice, create opportunities to have more open discussions and reduce the stigma associated with misunderstood conditions.

Our commitment and future aspirations

At Galapagos, we want to make a lasting positive contribution to society by bringing our innovative medicines to patients where needed. We use our target discovery library of over 6,000 genes to uncover proteins and compounds that help pinpoint the root cause of inflammatory and fibrotic diseases and improve the lives of patients with unmet needs.

Since opening our UK office, the incredibly talented and passionate Galapagos UK team has rapidly expanded. Since the start of 2021, our UK team has grown from 13 employees to nearly 60. I am exceptionally proud of the team and our accomplishments over the past year, including achieving two important milestones in our quest to bring new treatments to people with RA and IBD in 2021.

But we’re not going to stop here. As we approach the end of the year and move into 2022, we will continue to pioneer for patients and push the boundaries to innovate treatments that improve outcomes and quality of life for the patients we serve.

References

[1] National Rheumatoid Arthritis Society. What is RA? Available at https://www.nras.org.uk/what-is-ra-article Accessed: December 2021

[2] Kobak S, Bes C. An autumn tale: geriatric rheumatoid arthritis.?Ther Adv Musculoskelet Dis. 2018;10(1):3-11. doi:10.1177/1759720X17740075

[3] Bullock J, Rizvi SAA, Saleh AM, et al. Rheumatoid Arthritis: A Brief Overview of the Treatment.?Med Princ Pract. 2018;27(6):501-507

[4] Statistics, St Mark’s Hospital Foundation. Available at: Statistics - St Marks Hospital Foundation (Accessed December 2021)

[5] Ungaro, R., Mehandru, S., Allen, P., Peyrin-Biroulet, L. and Colombel, J., 2017. Ulcerative colitis.?The Lancet, 389(10080), pp.1756-1770

[6] GOV.UK. (n.d.).?Family Resources Survey: financial year 2019 to 2020. [online] Available at: https://www.gov.uk/government/statistics/family-resources-survey-financial-year-2019-to-2020/family-resources-survey-financial-year-2019-to-2020. [last accessed December 2021]

[7] Approved work: Invisible disabilities. (2021).?post.parliament.uk. [online] Available at: https://post.parliament.uk/approved-work-invisible-disabilities/#:~:text=As%20of%20December%202020%2C%2020. [last accessed December 2021]

[8] Crohn’s and Colitis website ‘Not Every Disability is Visible’

Not Every Disability is Visible | About the campaign (Accessed December 2021)

Job code: UK-UC-NA-202112-00002| Date of preparation: December 2021