This year, World Vitiligo Day was held on June 25. We spoke with Yan Valle, CEO of the Vitiligo Research (VR) Foundation and author of the book “A No-Nonsense Guide To Vitiligo”, about the work of the foundation and the skin disease which causes a gradual loss of skin color on different parts of the body.
Please tell us more about the Vitiligo Research (VR) Foundation as well as its inception and goals.
The VR Foundation is non-profit organization, aimed squarely at vitiligo. We educate, we support, we care.
The foundation was born from the determination of one man – Mr. Dmitry Aksenov, philanthropist – to help his daughter, who was diagnosed with vitiligo at an early age. After years of trying and failing to find an effective treatment for his daughter, Dmitry took this challenge personally.
In 2010, Dmitry Aksenov started the Vitiligo Research Foundation to facilitate therapy development for his daughter and millions of other people who suffer from vitiligo. I was invited to lead the company since its early days, and I’m honored to serve as its CEO for over ten years now.
While we are not alone at aiming at vitiligo, I think we are unique in the interdisciplinary approach that we have. The VR Foundation operates as a semi-virtual company, with a small internal staff managing research, clinical and educational programs in several countries. Our team members often wear several hats.
Because we are a donor-supported organization, we do not have the luxury of the behemoth R&D budgets of the Big Pharma. But we have funded an early-stage vitiligo research that laid a solid foundation for many other research projects, and attracted top talent into this obscure field of dermatology.
Perhaps, we are better known for the World Vitiligo Day campaign that we launched in 2011 and continue to coordinate at the international level.
What is vitiligo, what are its causes, and how can those affected find help and/or treatment?
Vitiligo is a generally unpredictable, non-contagious, lifelong skin disease that causes a gradual loss of skin color on different parts of the body.
The true causes of vitiligo are still unclear. Over 50 genes are involved in the immune system response and pigment cell production. It is beyond our current ability to understand a complex matrix of numerous genes interactions that result in a vitiligo patch.
We know the cause is pre-wired in the genes, just waiting for a bad luck moment. An obscure triggering event creates stress in the pigment-producing cells of the skin. An over-reactive immune system mistakenly identifies these stressed-out cells as intruders. Specialized cells called “T-cells” neutralize these “enemies”, driving progressive skin depigmentation.
In about the half of all cases, the real cause of vitiligo remains unknown. In the other half, psychological stress is the most frequently reported trigger for vitiligo. Environmental factors, physical skin damage and hormonal changes are often correlated with vitiligo onset. Prolonged contact with certain chemicals may also induce or worsen vitiligo; they are commonly found in hair dyes, perfume, cosmetics, detergents, cleansers, rubber slippers and plastic wearables.
There’s currently no cure for vitiligo; however, white spots on the skin can be minimized with a range of treatments. Simply put, patients can do one of three things with vitiligo: try to restore pigmentation, camouflage the white patches, or destroy the remaining color to have all-white skin.
Light therapy remains a “gold standard” but it may take anywhere between 8 to 16 months to restore natural skin color. Experimental treatments like afamelanotide, HSP70i, prostaglandin or simvastatin work better for someone with darker skin color. Topical Janus kinase (JAK) inhibitor from Incyte looks very promising but the company just started its registration process with the U.S. Food and Drug Administration (FDA). Dietary supplements, herbal mixes or vitamins are incapable of creating a lasting effect on their own; they can only mildly speed up effectiveness of the main therapy.
Sadly, white lesions frequently reappear when treatment is discontinued. Relapse is occurring in nearly half of all patients after 4–6 years of successful treatment.
Vitiligo should ideally be treated within two or three months of its first appearance, because as the condition progresses it becomes harder – but not impossible! – to treat. Even decades-old vitiligo spots may be re-pigmented with enough patience.
What are the challenges faced by those suffering from vitiligo?
Vitiligo has an overwhelming impact on the life of over 100 million people worldwide, causing severe mental trauma and often leading to depression, alcoholism, self-isolation and thoughts of suicide. Social neglect, bullying at school, workplace challenges are known all too well to nearly every vitiligo patient.
People in developing countries bear the greatest burden due to the risk for misdiagnosis of the disease, little to no access to effective treatments, widespread stigmatization and discrimination.
On your website, you name vitiligo as a “forgotten” disease. Why?
Many people call vitiligo the “forgotten disease” because there’s so little understanding and awareness about it. R&D funding into vitiligo needs to significantly improve – and not just on new medicines – but also on psychological interventions.
The situation has started to change recently. The U.S. FDA held its very first public meeting on vitiligo, where the community had a unique opportunity to speak directly to key stakeholders in vitiligo drug development. Another indication of the success of the vitiligo community efforts is that 18 U.S. State governors and numerous city mayors declared June “Vitiligo Awareness Month”.
However, there is still much work to be done and the VR Foundation aims to persuade major organizations such as the United Nations (UN) and the World Health Organization (WHO) to give vitiligo the attention it deserves.
What did the VR Foundation do for this year’s World Vitiligo Day, which was held on June 25?
Since its inception, the VR Foundation coordinates the global World Vitiligo Day campaign, while national and local vitiligo support groups organize conferences, walks, picnics, parades, and other events.
Unfortunately, the large-scale, in-person activities that typify World Vitiligo Day were not possible this year, due to COVID restrictions, so online events took place everywhere: in India, Kazakhstan, Kenya, Nepal, Nigeria, South Africa, UK and USA. Support groups from France and Hungary organized offline events.
Each year World Vitiligo Day is officially hosted by a different city. In 2021, Jakarta, Indonesia, acted as campaign virtual headquarters. In 2022, Mexico will take its turn to host the World Vitiligo Day celebrations.
Many thanks for your time and for the interview.