Research highlights from WVD 2018 Conference
As I only managed to join the live stream of the #WorldVitiligoDay 2018 Conference (Children, Research, and Hope for the Future), organised by Dr John Harris at the University of Massachusetts last month, for an hour or so, I have been viewing the video off and on over the past couple of weeks and thought I would share a little of what I have picked up with you in case this is something you haven’t had a chance to do yourself.
First of all, I must say how very impressed I was – but not in the least surprised – by the feel of the whole event. Even watching and listening online, I could sense a warmth, passion and mutual support and respect among the audience and the speakers that reinforced my opinion that vitiligo – love it or loathe it – has the ability to bring out the best in us by giving us a clearer understanding of ourselves and greater respect and compassion for others. Above all, the atmosphere was relaxed, good-natured and justifiably optimistic.
The first live stream of this conference: a great opportunity to feel part of it
Thanks to the efforts of the organisers and the wonders of modern technology, many of us from all over the world have been able to share in this annual event for the first time. And, whilst we were not able to participate in the mealtime conversations or the evening karaoke (shame!), we still have the opportunity to gain a huge amount of information and inspiration by playing the video which features an impressive and diverse array of guest speakers. They all made valuable contributions to the event, of course, but in this blog I particularly want to mention some insights I gained from listening to the 12 speakers who provided an update on current #vitiligo-research as 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 (despite the fact that 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, and let you guess which ones specifically caught my attention. (Don’t worry – I’ll tell you at the end anyway!)
12 Vitiligo research presentations
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 included details on the two clinical vitiligo trials that are currently ongoing, which mainly revolve around the use of JAK inhibitors, but 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) which is due to be tested 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 used typically 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 can take up to a year for it to develop and spread. But it has a 60 – 90% success rate.
Dr Prashiela 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 that have been conducted to investigate how melanocytes become stressed. The experiments use various chemicals that are known to trigger vitiligo (e.g. certain phenols) to model the stress response pathways in vitiligo and non vitiligo samples. Samples from vitiligo doners were found to be 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’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 by studying skin biopsies from narrowband UVB patients to see how the re-pigmentation process occurs. This research 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, given that so many patients are met with a decided lack of urgency and positivity from their doctors when they are first diagnosed.) 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 that have been 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 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 by encouraging delegates to refer doctors who do not know how to treat vitiligo to these guidelines. He then described his current involvement in developing treatments around the individual needs of each patient by combining topical and oral treatments with phototherapy to get the best results and his interest in 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 discovered that altering the gut microbes by administering antibiotics definitely accelerated the progression of vitiligo in the mice. This has led to the start (this summer – due to start in August and complete in June 2020) of a clinical trial entitled “The gut and skin biome in vitiligo disease progression”. This will take the form of a pilot study aimed at answering the question whether 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 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, being funded by its makers Incyte, aimed at getting it approved 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 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 because 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 was involved in 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 been involved in studies into the association between vitiligo and certain other conditions. Some of these have been known of for some time, like thyroid disease, inflammatory bowel disease, etc. and 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 he was inspired by Dr Harris’ mouse model of vitiligo 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, which is aimed at getting approval in the US and Europe, was part of a relatively new departure into dermatology for the company, which has previously been involved mainly in developing drugs for cancer.
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 I hope that, 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 to their cause - and organisations with money to invest - are being seriously proactive about taking on vitiligo.
The impression I have been left with is that there is, at last, a growing and unstoppable body of people – represented at the conference, but also around the world – who are determined to solve the vitiligo mystery, improve existing treatments, raise awareness, educate the uninformed and find effective cures.
All of this excites me. But a couple of topics in particular really caught my attention and I wonder if you have guessed what they were?
The first was a subject referred to by several of the speakers: 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 and have not offered them appropriate or timely treatments. Some of these patients are assertive enough to ask for second opinions or to challenge negative attitudes, based on their own experiences or serious online research. But doctors do not like to be told 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 guidelines produced by those experts specifically to inform the medical profession on best practice in vitiligo.
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 the bacteria in the gut. 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 whose chronic poor digestion and vitiligo developed hand-in-hand over decades, only to reverse dramatically 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 am convinced that healing the digestive system is the key, and the safest route, to reversing 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 and the like. 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.
My name is Caroline.