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Rewriting The Vitiligo Experience: A White Paper 

What are the current challenges and needs in the diagnosis, management and care of vitiligo?

Challenges
Patient Pathway
Patient Story
Findings and Recommendations

Together with healthcare professionals and with the support of Incyte, VIPOC is taking part in a pioneering collaborative project analysing the gaps and bottlenecks in vitiligo diagnosis, management and care in Europe, and putting forward European-level policy recommendations to address these.

Key Challenges

We often think of diagnosis as the end of a journey. A culmination of the tests, examinations and procedures we undergo in search of answers. However, for people living with vitiligo, diagnosis is not the end of the journey – it’s the start.

It’s important to recognize that diagnosing vitiligo is already challenging. The appearance (and progression) of the lesions varies, which causes confusion with symptoms of other skin conditions.1

People living with vitiligo are prone to developing other diseases, including psoriasis, diabetes and rheumatoid arthritis, in addition to the lack of consensus on treatment for the condition itself.2 The statistics are shocking: 65% of people diagnosed with vitiligo in Europe are told that there is no treatment that can cure the condition completely, and 17% are not given any treatment whatsoever.3,4

For many people living with the condition, vitiligo takes a tremendous toll on quality of life (QoL).5,6 From choosing clothing and feeling empowered in the workplace, to socializing and exercising, vitiligo patients report a pressure to hide their skin which affects both their daily activities and psychosocial health.14

Additionally, vitiligo patients accumulate considerable costs between out-of-pocket payment for treatments and decisions by national healthcare systems not to reimburse all therapies.8

The appearance (and progression) of the lesions varies in vitiligo, which causes confusion with symptoms of other skin conditions and increases misdiagnosis.
65% of people diagnosed with vitiligo in Europe are told that there is no treatment that can cure the condition completely, and 17% are not given any treatment whatsoever.
People in Europe wait an average of 2.5 years from first noticing lesions to receiving an official diagnosis – and they are generally not given adequate information nor reassurance when they finally get it.
In Europe, 17% of people who seek treatment for vitiligo don’t receive any. In France, the rate is even higher: 84%.

Vitiligo patients in France are deprived of treatment and discouraged from trying to access care.

The emotional distress associated with vitiligo can escalate into sleep disturbances, relationship difficulties and withdrawn behavior without support.
From choosing clothing and feeling empowered in the workplace, to socializing and exercising, vitiligo patients report a pressure to hide their skin which affects both their daily activities and mental health.

Explore our suggestions for addressing the unmet needs of people living with vitiligo in the Findings and policy recommendations section.

Patient Pathway

The findings of the white paper are categorised into five themes, each one corresponding to a step in the patient pathway.

Awareness and pre-diagnosis

The cause of vitiligo is unknown, so people fill in the blank with explanations ranging from lack of hygiene and infection to witchcraft and evil spirits.9,10 Unfortunately, the individuals living with vitiligo bear the burden of misconceptions because they are subject to significant stigma (accompanied by psychological distress and feelings of social isolation) as a result.11

Providing psychotherapy and/or counselling for individuals living with vitiligo is not a solution to the stigma, but it helps them manage the emotional distress to prevent it from escalating – into sleep disturbances, relationship difficulties and withdrawn behavior.12

The solution to stigma is education – raising awareness of vitiligo among the general public, teaching a consistent treatment strategy across countries and ensuring vitiligo features in all general practitioners’ curricula (alongside pathological mechanisms and chronicity).

Diagnosis and referral

Guidance for healthcare practitioners to diagnose vitiligo is not consistent across Europe, and primary care providers lack the specialized knowledge that dermatologists have on chronicity and progression in the condition – resulting in 3 of every 7 people who seek treatment for vitiligo receiving an incorrect diagnosis.13,14  Primary care physicians misdiagnose 66.6% of the people who go to them for vitiligo treatment, compared to the 40.5% that dermatologists misdiagnose.15

Consequently, despite early intervention being essential in vitiligo, people in Europe wait an average of 2.5 years from first noticing lesions to receiving an official diagnosis – and they are generally not given adequate information nor reassurance when they finally get it.16,17

Treatment initiation and disease management

Timely treatment is crucial for people living with vitiligo, because interventions are most effective (with regards to slowing down pigment loss) at the start of the disease. However, 65% of people diagnosed with vitiligo in Europe are told that their condition cannot be fully treated, and 37% are not told about any available treatment – causing them to refrain from seeking treatment again.18

Vitiligo treatment is not one-size-fits all, patients in Europe try out an average of 5 management strategies before they find a therapy which works for them, and the uncertainty often leads to significant emotional burden (frustration, anxiety, depression) for which they need medical and/or psychological support.

No single strategy guarantees success, and the blurred line between pharmacological and non-pharmacological interventions for vitiligo makes it difficult to evaluate them as separate approaches – especially when they are used in conjunction. The struggle of vitiligo patients to find a strategy that works for them is exacerbated by the absence of a shared decision-making tool, which would improve communication between vitiligo patients and their healthcare practitioners.19

Vitiligo patients who seek out specialists for concurrent conditions are met with long waiting lists, a limited number of referrals by primary care physicians, a lack of specialists, geographic distance to specialist centers and insufficient health insurance coverage.

Follow-up and support

People in Europe who undergo treatment for vitiligo rarely receive follow-up consultations, despite the impact that the diagnosis has on mental health – with 26.5% reporting that they experience anxiety, and 23.4% reporting depression.20 Overall, vitiligo impacts the emotional wellbeing of a third of people in Europe living with the condition, with 53.9% reporting that they actively hide their skin – to protect their self-esteem from the effects of stigmatisation.21

The protocol for follow-up after vitiligo treatment in the EU varies by country and extent of skin involvement, with no acknowledgement of women, people who have darker skin nor those with facial lesions – the populations for which the treatment burden is the greatest.22,23 Additionally, the follow-up strategies don’t take the efforts of the individual to hide their vitiligo into account – despite the number of daily activities that patients report as stressful because of the condition: clothing choices (49.5%), social activities like the beach or pool (47.7%), parties or events (42.9%), work or school 40.4%) and exercising (40.9%).

Despite the necessity of an international registry for patients with vitiligo to improve research, treatment, care and policy decisions, the resource doesn’t exist.24 Other obstacles for improving vitiligo care are patients having limited access to information about clinical trials, and the absence of a common consensus on the best instrument to measure vitiligo (extent, repigmentation, disease activity).25 As a solution, the International Vitiligo Task Force (IVTF) recommends quality of life (QoL) measurements to be used in all patients and interventions.26

Policy prioritisation and reimbursement coverage

Vitiligo treatment is lengthy, uncomfortable and expensive – but it isn’t reimbursed. Vitiligo patients, and their caregivers, are subject to fragmented reimbursement schemes and out-of-pocket payments to manage the disease. The onus of payment for pharmacological vitiligo treatment is placed more on patients than on third-party payers, government agencies and medical institutions – making it prohibitively expensive for many people (given their high cost).27  Insurance coverage is even worse for much-needed non-pharmacological treatments, like at-home narrowband UVB, excimer lamp and psychological consultation, meaning they are seldom reimbursed.

The lack of reimbursement for vitiligo therapies exacerbates the challenges of managing the disease, by causing concern about the cost in addition to the physical impact of treatment. Without financial support to help them cover the costs, many people seeking treatment for vitiligo are unable to access it – leading to delayed treatment, foregone care, feelings of self-consciousness, anxiety and depression. Unfortunately, patients are left without the necessary tools to cope with the emotional and social implications of the disease.

Policy development needs to prioritise the official recognition of vitiligo as a disease, securing approval for treatments from relevant health authorities and involving all relevant stakeholders (including patient organisations) in the reimbursement decisions. Additionally, awareness needs to be raised among policymakers and healthcare institutions about the burden of vitiligo – including cost, psychological impact and prevalence.

Dr. Nanja van Geel is a prominent dermatologist and esteemed researcher. The PhD that Dr. van Geel completed in 2005, “Evaluation of non-cultured epidermal cellular grafting in vitiligo,” was the first instance of a double-blind randomized controlled trial to evaluate a non-cultured epidermal cellular transplant method for vitiligo—simultaneously advancing both vitiligo treatment and research methodology in dermatology.

Today, Dr. van Geel holds the position of associate professor at Ghent University in the Department of Dermatology, where she pioneers a specialized approach to diagnosing and treating vitiligo, conducts research into outcome measures, and frequently speaks at international conferences.

Discover a Patient Story

Patient Testimonial

Paul Monteiro serves as the chairman of the Dutch Patient Association of Vitiligo and is a fierce advocate for open communication with healthcare professionals to improve decision-making – from ‘care to cure’.

Paul spotted the first signs of vitiligo when he was 12 years old, but experienced the most change in skin pigment ten years later – during his twenties.

Paul struggled with the profound effect that his changing appearance had on his identity as an Indonesian person, but he took an important lesson away from the experience; we remain the same person on the inside even when our appearance changes on the outside.

Findings and Policy Recommendations

The findings of the white paper are categorised into five themes, each one corresponding to a step in the patient pathway.

Finding

Vitiligo is widely misunderstood, with regards to the physical symptoms and the effect that it has on the mental wellbeing of people living with it.

Recommendations

  • Policymakers must ensure that funding is available for 1. campaigns on recognising the signs and symptoms of vitiligo, and 2. the development of resources on patients’ unmet needs and the burden of vitiligo.
  • European and national medical societies should ensure vitiligo is included on the medical curriculum for GPs, as well as in additional training programs and continued medical education (CME).
  • Medical societies and patient organisations at the European and national level should collaborate on interdisciplinary conferences, symposia and workshops on vitiligo, involving healthcare professionals and patients.

Finding

On average, it takes 2.5 years for people in Europe to obtain a diagnosis of vitiligo, and 3 in every 7 of those people are labelled with an incorrect diagnosis in the process. Moreover, vitiligo patients are given incomplete information about the condition upon diagnosis and rarely receive referral to a specialist.

Recommendations

  • Medical societies should drive the creation of dedicated national/local referral networks and referral protocols, to connect general practitioners (GPs) with dermatology specialists to accelerate diagnosis and streamline the referral process.
  • The model of the European Reference Networks should be explored to define criteria for excellence in skin health at European level, connection national hubs and create hub-and-spoke models whereby national centers coordinate with smaller centers.

Finding

65% of people diagnosed with vitiligo in Europe are told that the condition cannot be fully treated and left on their own to seek out treatment options, leading to feelings of isolation and a trial-and-error experience. Moreover, vitiligo patients are under pressure to find a treatment while they are in the initial stages of pigment loss and identify specialists themselves to support them with concurrent health conditions.

Recommendations

  • Medical societies should promote the integration and dissemination of the Worldwide Expert Recommendations, along with integrated care pathways, to ensure coordinated diagnosis and management of vitiligo.
  • Policymakers and health authorities should ensure that protocols regarding patients’ access to pharmacological vitiligo treatments facilitate timely and appropriate intervention.
  • Medical societies and patient organisations should encourage national policymakers and health authorities to include non-pharmacological treatments (like at-home UVB and excimer lamp) in standard vitiligo care and reimbursement schemes.
  • European and national medical societies, patient organisations, national health authorities and the relevant government ministries should define recommendations to raise awareness of available pharmacological and non-pharmacological treatments for vitiligo.

Finding

The quality of follow-up care for vitiligo in Europe is low and psychological support is rarely offered, exacerbating the emotional impact of the disease on mental health.

Recommendations

  • Medical societies and patient organisations (both national and European) should work to raise awareness among healthcare professionals and patients about the importance of follow-up care and how to manage the condition.
  • At both the European and national level, medical societies should promote and support the creation of patient registries to collect data on vitiligo cases and treatment outcomes (and comorbidities).
  • Medical societies and patient organisations should encourage international, supranational and national policymakers and health bodies to recognize and consider the psychological burden of vitiligo.
  • European and national medical societies should support the implementation and use of standardised outcome measures for clinical practice.
  • Patient registries should be promoted by EU and national policymakers as part of the implementation of the European Health Data Space.

 

Finding

Vitiligo is not prioritized in policy, resulting in fragmented reimbursement schemes, high out-of-pocket payments and disadvantaged socio-economic groups having poorer health outcomes because they are unable to access treatment.

Recommendations

  • National health systems should provide full coverage of pharmacological and non-pharmacological treatments, to avoid eligible patients bearing financial burden.
  • Policymakers and medical societies should ensure that national-level funding is available for research on areas including (but not limited to) vitiligo epidemiology, early signs, risk factors and strategies for early detection, translational and therapeutic research.

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Understand Vitiligo Better

Vitiligo affects millions globally. Take a quick quiz to learn about its causes, treatments, and daily challenges, and gain the knowledge to better understand and support those living with it.

Quiz

What causes the skin changes in vitiligo?
Vitiligo is contagious.
Reasonable amounts of sun exposure can help with repigmentation of the skin.

References

  1. Bibeau K, Harris J, et al. Diagnosis and Management of Vitiligo From the Perspectives of Patients and Healthcare Professionals: Findings From the Global VALIANT Study. Presented at: Maui Derm for Dermatologists, 24 January 2022, Maui, HI.
  2. Dahir AM, Thomsen SF. Int J Dermatol. 2018;57(10):1157-1164.
  3. Bibeau K, Harris J, et al. Diagnosis and Management of Vitiligo From the Perspectives of Patients and Healthcare Professionals: Findings From the Global VALIANT Study. Presented at: Maui Derm for Dermatologists, 24 January 2022, Maui, HI.
  4. Bibeau K, et al. Exploring the Natural and Treatment History of Vitiligo: Findings From the Global VALIANT Study. Presented at: Maui Derm for Dermatologists, 24 January 2022, Maui, HI.
  5. Morrison B, et al. Br J Dermatol. 2017;177(6):e338-e339.
  6. Silverberg JI, Silverberg NB. JAMA Dermatol. 2013;149(2):159-164.
  7. Bibeau K, et al Mental Health and Psychosocial Quality-of-Life Burden Among Patients With Vitiligo: Findings From the Global VALIANT Study. JAMA Dermatol. 2023;159(10):1124-1128.
  8. Ezzedine K, Harris JE, Bibeau K, et al. Treatment Burden Among Patients With Vitiligo: Findings From the Global VALIANT Study. Presented at 31st European Academy of Dermatology and Venereology (EADV) Congress, 7-10 September 2022, Milan, Italy, P1402.
  9. Ezzedine K, Eleftheriadou K, Jones H, et al. Psychosocial Effects of Vitiligo: A Systematic Literature Review. J Am Acad Dermatol. 2021; 22(6):757-774.
  10. Millington GWM, Levell NJ. Vitiligo: the historical curse of depigmentation. Int J Dermatol. 2007;46(9):990-5.
  11. Ezzedine K, Eleftheriadou V, Jones H, et al. Psychosocial Effects of Vitiligo: A Systematic Literature Review. Am J Clin Dermatol. 2021;22(6):757-774.
  12. Ezzedine K, Eleftheriadou V, Jones H, et al. Psychosocial Effects of Vitiligo: A Systematic Literature Review. Am J Clin Dermatol. 2021;22(6):757-774.
  13. Bibeau K, Harris J, et al. Diagnosis and Management of Vitiligo From the Perspectives of Patients and Healthcare Professionals: Findings From the Global VALIANT Study. Presented at: Maui Derm for Dermatologists, 24 January 2022, Maui, HI.
  14. Teasdale E, Muller I, Abdullah Sani A, et al. Views and experiences of seeking information and help for vitiligo: a qualitative study of written accounts. BMJ Open. 2018;8(1):e018652.
  15. Hamzavi IH, Bibeau K, Grimes P, et al. Exploring the natural and treatment history of vitiligo: perceptions of patients and healthcare professionals from the global VALIANT study. Br J Dermatol. 2023;189(5):569-577.
  16. van Geel N, Harris JE, Hamzavi IH, et al. Exploring the Natural and Treatment History of Vitiligo in Europe: Findings From the Global VALIANT Study. Presented at 31st European Academy of Dermatology and Venereology (EADV) Congress, 7-10 September 2022, Milan, Italy, P1401.
  17. (Presentation) “Invitsibles – dando voz al vitiligo – Making the disease visible and advancing its management”, IESE Center for Research in Healthcare Innovation Management + INCYTE + Outcomes10
  18. Bibeau K, Harris J, et al. Diagnosis and Management of Vitiligo From the Perspectives of Patients and Healthcare Professionals: Findings From the Global VALIANT Study. Presented at: Maui Derm for Dermatologists, 24 January 2022, Maui, HI.
  19. Shourick J, Ahmed M, Seneschal J, et al. Development of a shared decision-making tool in vitiligo: an international study. Br J Dermatol. 2021;185(4):787-796.
  20. Ezzedine K, Harris JE, Hamzavi IH, et al. Mental Health and Psychosocial Burden Among Patients Living With Vitiligo in Europe: Findings From the Global VALIANT Study. Presented at 31st European Academy of Dermatology and Venereology (EADV) Congress, 7-10 September 2022, Milan, Italy, P1384.
  21. James, W. D., Elston, D., Treat, J. R., & Rosenbach, M. A. (2019). Andrews’ Diseases of the Skin: Clinical Dermatology (13th ed.). Elsevier.  Paller, A. M., & Mancini, A. J. (2021).
  22.  Paller and Mancini – Hurwitz Clinical Pediatric Dermatology: A Textbook of Skin Disorders of Childhood & Adolescence (6th ed.). Elsevier.

 

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