Vitiligo science is progressing

Last Updated on 21st February 2020 by Caroline Haye

Research highlights from WVD 2018 Conference

I only managed to join the live stream of the #WorldVitiligoDay 2018 Conference last month for part of it. (The conference, organised by Dr John Harris at the University of Massachusetts, was entitled Children, Research, and Hope for the Future.) So I have been viewing the video off and on over the past couple of weeks. And I thought I would compile this vitiligo research summary, based on what I have picked up. Hopefully, you will find it encouraging. I certainly think you’ll agree that vitiligo science is progressing faster than ever before.

First of all, I must say how very impressive the feel of the whole event was. (Impressive, but not in the least surprising.) Even watching and listening online, I could sense a warmth, passion and mutual support. There was an obvious respect among the audience and the speakers. And the atmosphere reinforced my opinion that vitiligo has the ability to bring out the best in us. If only by giving us a clearer understanding of ourselves and greater compassion for others. Above all, the conference felt relaxed, friendly and justifiably optimistic.

The first live stream of this conference: a great opportunity to feel part of it

Hats off to the conference organisers and to the wonders of modern technology. For the first time, many of us from all over the world were able to share in this annual event. We were not able to participate in the mealtime conversations or the evening karaoke (shame!). But we still had the opportunity to gain a huge amount of information and inspiration by playing the video. Because this features an impressive and diverse array of guest speakers. They all made valuable contributions to the event, of course. But I particularly want to mention some of my top highlights from the 12 speakers who provided an update on current vitiligo-research. Not least, because I know this is a topic very close to so many hearts.

I found all of the scientific input engrossing and encouraging, even if I can’t pretend to have understood it all. (Even though the speakers all did a good job of translating their topics into layman’s language as far as possible). But there were certain presentations that particularly excited me more than the others. Not that they were better, but simply because they resonated with my own experiences.

I shall give you some snippets on all 12 of the presentations, in the order they were given. Then, maybe, you can guess which ones specifically caught my attention. (Don’t worry – I’ll tell you at the end anyway!)

12 Vitiligo research updates

Dr Harris

… started things off by providing an update on the research he and his team have been conducting using mice and also blood and skin from human patient volunteers. He shared details of the two clinical vitiligo trials that are currently ongoing. They mainly revolve around the use of JAK inhibitors. But he also talked about a non-JAK inhibitor drug that it is hoped could give long-lasting results. (i.e. A short course could create years worth of benefit.) And this drug is due for testing in a clinical trial in the summer of 2019).

Dr Bassel Mahmoud 

… talked about his area of expertise, which is surgical treatments for vitiligo. These are typically appropriate in cases that don’t respond to any other medical treatment. The skin grafting technique he described does not give instant results. It can require a month or two for new pigment to start showing. And it can take up to a year for it to develop and spread. But it has a 60 – 90% success rate.

Dr Prashiela Manga

Dr Manga’s area of research is into exactly what it is that makes melanocytes the target of the immune system in vitiligo. She described experiments into how melanocytes become stressed. The experiments use various chemicals that trigger vitiligo. (For example, certain phenols.) This allows researchers to model the stress response pathways in vitiligo and non vitiligo samples. And results show that samples from vitiligo doners are much more sensitive to these chemicals than non-vitiligo doners. This stress leads to the autoimmune response, resulting in melanocyte cell death. The goal of this research is to find way of modifying the autoimmune component of this process in order to protect the melanocytes.

Dr Stanka Birlea

Dr Birlea’s specific interest is in the re-pigmentation process. She gave a description of the stem cell research she is doing into the hair follicle bulge and differentiated melanocytes in the epidermis. This research studies skin biopsies from narrowband UVB patients to see how the re-pigmentation process occurs. It has been going on for 6 years and is still ongoing. The long term goal is to select molecules that can be incorporated into pharmaceutical compounds to induce re-pigmentation.

Dr Amit Pandya ​

… gave an overview of the range of treatments available at the Vitiligo Clinic at the University of Texas Southwestern. He advocates aggressive treatment of the “confetti-like lesions” that are typical of rapidly progressing vitiligo as soon as these symptoms appear. (It was refreshing to hear Dr Pandya stress the importance of early vitiligo treatment. Unfortunately, this is not an attitude that is very prevalent among doctors in general. It is far more common for patients to experience a decided lack of urgency and positivity from their doctors when they first receive a diagnosis.)

He pointed out that the Quality of Life (short form-36) survey shows that vitiligo results in more depression and mental stress than most other serious health problems… Including cancer, heart disease and diabetes. And it was clear that he feels passionately about the need to get the word out that vitiligo is treatable and that early treatment is crucial. With that in mind, he made reference to two documents. Both were published by The Vitiligo Working Group (of which he and several others of the guest speakers are part) that can be used with dermatologists. One is a set of guidelines for vitiligo phototherapy. (Dr Pandya stated that there are 17 thousand dermatologists in America and the majority of them don’t know how to treat vitiligo with phototherapy.) And the other is “Current and Emerging Treatments for Vitiligo”.

Dr Iltefat Hamzavi

… a prolific expert on vitiligo and also a member of the Vitiligo Working Group, continued on this theme. He encouraged delegates to refer doctors who do not know how to treat vitiligo to these guidelines. Then he described his current involvement in developing treatments around the individual needs of each patient. He does this by combining topical and oral treatments with phototherapy to get the best outcomes. And also by customising and optimising light frequencies for better phototherapy results.

Dr Caroline Le Poole

… talked about her current research into the bacteria of the gut and what relevance this might have in vitiligo. She described experiments that looked at the microbes on the skin and in the gut of vitiligo mice. These found no great difference as a result of changes in skin bacteria. But she discovered that altering the gut microbes by administering antibiotics definitely accelerated the progression of vitiligo in the mice.

Following on from this research, a clinical trial will take place, entitled “The gut and skin biome in vitiligo disease progression”. (Due to start in August 2019 and complete in June 2020.) ​It will take the form of a pilot study to find out if the gut and skin microbiome of patients with vitiligo differs from the general population. ​Dr Le Poole and her team have also been working on another treatment for vitiligo… A possible immunomodulatory agent that has been shown to be effective in larger animals based on a modified version of the stress protein (HSP70).

Dr David Rosmarin

… described the different “arms” of the immune system that are too active in various different skin diseases. And he talked about the particular JAK inhibitor (Ruxonitlib) that currently looks the most promising for targeting the arm of the immune system that is overactive in vitiligo. He explained that oral JAK inhibitors can cause systemic side effects. Whereas topical ones offer a way of reducing side effects… Which is why topical Ruxonitlib is the subject of a large study. In fact, its makers Incyte are funding the study, in hopes of getting approval for clinical use.

Dr. Victor Huang

… announced the opening of a new Vitiligo Medical Centre at UC Davis. One of its aims is to create a high fidelity registry of patients. And also to build up a really comprehensive bio-repository from vitiligo patients, representing all aspects of vitiligo. He also talked about his collaboration with MIT to produce a cost-effective, available and reliable method of accurately measuring changes in vitiligo during treatment. He stressed the importance of this, pointing out that it can be difficult for patients and clinicians to judge whether or not vitiligo treatments are working… Given how gradually changes typically occur and how unreliable our perception of these changes can be.

Dr Nada Elbuluk 

… talked about 2 categories of research she worked on during her time at NYU:
1. studies (in collaboration with Dr Manga) into the stress pathways involved in vitiligo and
2. psychotherapies for vitiligo, looking at how support groups, psychological therapies and psycho-social interventions can help patients. This is just as important, in her opinion, as medical treatment. Not surprisingly, survey results are beginning to show greater quality of life for those in support groups than those who are not.  She had also worked on studies into the association between vitiligo and certain other conditions. Some of these have been known about for a while… Like thyroid disease, inflammatory bowel disease, etc. Whereas others, like MS, are more surprising. This data is important since clinicians need to know what else to screen for when patients are diagnosed with vitiligo.

Dr Brett King

… described how Dr Harris’ mouse model of vitiligo inspired him to consider the possibility that the class of medicines known as JAK inhibitors might be applicable to vitiligo as a way of interrupting the pathology of the disease and preventing depigmentation. Promising early indicators have led to further research over the past 3 years and now to the clinical trials currently underway.  These represent a first step toward effective drugs for vitiligo. He delighted the conference with his assertion that a time is coming soon when everyone with vitiligo will have the option whether they want to have their vitiligo go away or keep it! “It will be a choice that is firmly yours and nobody else’s” said Dr King.

Dr Michael Montgomery

… of Incyte (the pharmaceutical company that makes JAK inhibitors, including Topical Ruxonitlib) was the last of the 12 speakers. He explained that the company’s sponsorship of the current clinical trials of Ruxonitlib cream for vitiligo was part of a relatively new departure for them into dermatology. (They have previously focused on developing drugs for cancer.) The hope is that these trials will succeed in obtaining approval for the drug in the US and Europe. 

The vitiligo projects that interested me the most

I have only been able to give you a sketchy idea (a mostly accurate one, I hope) of the 12 presentations. But maybe, like me, you have caught a sense of how far vitiligo research has come in the past few years. And how exciting it is that, finally, individuals with great expertise, passion and dedication (and organisations with money to invest) are being proactive about taking on vitiligo.

My impression, based on these presentations, is that there is, at last, a growing and unstoppable body of people who are determined to solve the vitiligo mystery. They are focused on improving existing treatments and raising awareness, as well as educating the uninformed and finding new cures.

All of this excites me. But a couple of topics in particular really caught my attention. (I wonder if you have guessed what they were?)

The first was a subject that several of the speakers referred to… The importance of “educating” (my word, not theirs) doctors about vitiligo. I talk to so many people around the world whose doctors have dismissed or trivialised their condition. These doctors have not offered them appropriate or timely treatments. Some of their patients may be assertive enough to ask for second opinions or to challenge negative attitudes. But doctors do not like it when others tell them how to do their job. Let’s face it, who does?

Too many patients end up with little support, few options, poor outcomes and a sense of hopelessness. How refreshing, then, to hear some of the world’s foremost experts on vitiligo talk about the effectiveness of existing treatments and the importance of psychological support. And how useful it is for patients everywhere to be able to refer their doctors, if necessary, to published best practice guidelines produced by those experts.

Vitiligo and gut bacteria

The second topic that had me on the edge of my seat was Dr Caroline Le Poole’s research into the relationship between vitiligo and gut bacteria. Amid so much talk of drugs, phototherapy and skin grafting, it came as quite a surprise to hear a scientist announce that her goal is to “find out if there is a link between vitiligo and the contents of our gut and how well we digest our food”.

Anyone who has read the story of my re-pigmentation or many of my blog posts will understand why I welcome the news of this area of research. As someone who developed chronic poor digestion and vitiligo over a period of decades, only to reverse both as a result of nutritional therapy, I have been interested in the apparent link between vitiligo and the working of the gut for years. And I’m convinced that healing the digestive system is a key, and the safest one, to reversing and managing vitiligo.

I have lost count of the other vitiligo sufferers I have heard from who also suffer from poor digestion, “Leaky Gut”, IBS, food sensitivities, etc. And yet most medical professionals refuse even to discuss these problems in relation to vitiligo. So, hearing that serious research and clinical trials are going on into this was music to my ears. Maybe, at last, the time is approaching when doctors will no longer be able to pooh-pooh (sorry about that) the concept that vitiligo is not just skin deep, but may actually be a symptom of digestive abnormalities.