Mind games

Vitiligo is often viewed as a cosmetic condition, but in fact it is a chronic autoimmune disease that can come with many challenges and have a profound impact on people’s lives.

It is characterised by depigmentation of the skin, which appear as white patches, caused by progressive destruction of pigment-producing cells known as melanocytes.

Due to a lack of awareness about the disease and limited types of treatment options available to people living with vitiligo there continues to be a high level of unmet need among this community.

To ensure that people with vitiligo receive appropriate care and support, and to stimulate research and innovation within the space, it is critical that more people – including payers, policymakers and the general public – understand its multi-faceted impact.

These key stakeholders, including the pharmaceutical industry, can play a key role in supporting the community and help ensure that vitiligo, and other chronic autoimmune skin diseases, is taken seriously and receives the right level of attention needed to improve the lives of people living with the disease.

To build a deeper understanding of vitiligo’s impact, we have developed an audiovisual series called InsiDerm, where we talk with guest speakers in the vitiligo community about their work, perceptions, experiences, needs and desires for change.

As part of this initiative, I recently spoke with Jean-Marie Meurant – Vice President of the Vitiligo International Patient Organization (VIPOC) and Vice President of the Association Française du Vitiligo – to discuss the impact of the disease on the lives of patients and their families.

We also talked about potential ways to achieve better outcomes for patients and his hopes for the future of vitiligo. His insights, as both a person with vitiligo and an advocate for others living with the disease, are invaluable.

The physical effects of vitiligo are well acknowledged, for example people living with the disease need to protect their skin to avoid exacerbation of the disease from the sun. To illustrate this, Jean-Marie explained that he takes extra care by wearing hats and shirts with long sleeves, applying strong sunscreen to any exposed skin, and remaining indoors during the hottest parts of the day.

In addition, the psychological impact of the disease is just as significant but less understood. People with vitiligo often feel unwanted attention in their day-to-day life and can have trouble finding ways to address it.

As Jean-Marie explained, some people may intentionally avoid activities like social outings, going to the cinema or the swimming pool, fearing that people will openly stare at their skin. There is also a misperception that vitiligo is contagious, which can cause people to avoid contact.

He added that many patients feel stigmatised by the lack of understanding from the general public, which impacts their ability to perform daily activities, and affects both their physical health and their emotional well-being.

Other psychological impacts include being averse to looking at their reflection in the mirror and ongoing concerns that their vitiligo patches will continue to spread to other regions of their body, especially to places such as the face and hands where others will notice them more.

While some people with vitiligo have learned to live with and embrace their disease, others struggle, which can lead to mental health issues, such as anxiety or depression.

“Many people with vitiligo fear the spread of the disease. When you have vitiligo, you have a constant fear about the development of your vitiligo, every day it could change,” elaborated Jean-Marie, describing the mental burden of the disease. “It’s not like a fever where you can just take a pill and it’s okay. You are experiencing something very deep and for some people this can lead to feelings of desperation.”

He added: “It’s really important to remember that the unmet need for people with vitiligo is about getting a diagnosis, about access to treatment and more treatment options, but it’s also about addressing the psychological impact on patients.”

Underpinning the lack of awareness is the perception, amongst the public and even some healthcare professionals, that vitiligo is a cosmetic condition rather than an autoimmune disease.

This misperception is prevalent across Europe – Jean-Marie noted that even today, after years of work by the advocacy community, he could not name any countries in Europe where this mischaracterisation was resolved.

That is why there is still a great need to change people’s perception and understanding of the disease in order to support and improve the lives of people living with vitiligo and reduce stigma.

Patient advocates, like Jean-Marie, play an important role in shifting perceptions of vitiligo and raising awareness around the variety of ways that the disease affects people living with vitiligo, conveying unmet needs, informing strategies for addressing them and bringing their perspective to the attention of the medical community, industry and key policymakers.

The work patient advisory groups do is incredible, but it is not something they should have to do alone. That is why we, at Incyte, support and collaborate with these organisations in their efforts to raise awareness and effect change.

By highlighting the lived experiences of those affected by vitiligo, listening to the needs of patients and the concerns of the community, we can work together to raise awareness, provide improved solutions and create platforms, like InsiDerm, through which their perspectives can be shared.

Through working together, the whole continuum of stakeholders involved in the patient journey can help to change perceptions of vitiligo by showing that there is far more to the disease than meets the eye; and in so doing we can aim to positively impact the lives of people living with the burden of this chronic autoimmune skin disease.

For more information about vitiligo and the work done by patient advocacy groups, you can find English-speaking resources through the Vitiligo International Patient Organizations Committee (vipoc.org), The Vitiligo Society (vitiligosociety.org), Vitiligo Support UK and the Association Française du Vitiligo (afvitiligo.com).

Jonathan Dickinson is General Manager at Incyte Europe. Go to incyte.com