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"Speaking of Vitiligo..."

Summary of the vitiligo patient meeting in Orange, CA on September 27th, 2015

Posted On: Tuesday, October 20, 2015 Posted By: John E. Harris Tags: Vitiligo, Vitiligo Research, Vitiligo Treatment

vitiligo patient meeting Orange photo

I previously posted that we were organizing a meeting specifically for vitiligo patients in Orange, CA titled Advances in Vitiligo Research and Care, where experts from all over the world would speak about vitiligo, what causes it, how to treat it, and the progress that has been made through research. You can read that post here. But, many of you couldn’t make it to the meeting, and I promised to write a summary. Here it is!

It was a great meeting and was well-attended, by vitiligo experts and vitiligo patients from all over the world. The meeting began with an introduction by one of the organizers, Dr. Anand Ganesan, from the University of California Irvine, the university hospital that hosted the event. The first 3 hours were dedicated to talks by expert vitiligo clinicians and researchers, which were followed by a panel question and answer session. The talks started with me, Dr. John E. Harris (Worcester, MA), and continued with Dr. Pearl Grimes (Los Angeles, CA), Dr. Amit Pandya (Dallas, TX), Dr. Caroline Le Poole (Chicago, IL), and Dr. Richard Spritz (Denver, CO). Here is a brief summary of the talks and following discussion:

Vitiligo: what does it look like, what is it really, and what is the hope for future treatments? (Dr. John E. Harris). I discussed the common, uncommon, and rare types of vitiligo that I see in clinic, and what they mean for prognosis and response to treatment. For example, segmental vitiligo is limited to one side of the body, usually doesn’t spread to other parts of the body, is difficult to treat using standard approaches, but is very responsive to a new surgical technique called the Melanocyte-Keratinocyte Transplant Procedure (MKTP). Confetti-like depigmentation (recently described by Dr. Pandya) marks a form of vitiligo that progresses quickly, and appears as tiny white spots on the skin, rather than the usual larger patches that are most commonly seen. I talked about some known triggers of vitiligo, including hair dyes (recently described by my collaborators and me) and the recent outbreak of vitiligo in Japan due to a cosmetic skin lightening cream. You can read more about chemical triggers of vitiligo here.

I then talked about what I do for patients when they come in to see me in the clinic (discuss medical history, do a physical exam with Wood’s lamp, ask about other autoimmune diseases, possibly check blood work, and rarely do a biopsy). Next I mentioned the typical treatments for disease, which include narrow-band UVB (nbUVB), topical steroids, and Protopic. UVB is the most effective treatment, but can be difficult to schedule. Again, MKTP surgery can be used for patients with segmental vitiligo, and bleaching of the skin with Benoquin is an option for a small number of patients who decide to remove all of their skin color to make it even, rather than patchy. Makeup can be used to cover the white spots of vitiligo, but requires an investment of time to find the right color match. More information about current vitiligo treatments can be found here.

Lastly, I talked about what causes vitiligo, including how skin gets its color in the first place, how the pigment cells are destroyed by the immune system, and how pigment is regained from the hair follicles after successful treatment. I talked about how the immune proteins IFN-g and CXCL10 drive the disease, and that blocking these proteins or signals upstream of these proteins may be where future treatments come from; more information about what causes vitiligo can be found here. One recent example is the ability of tofacitinib (or Xeljanz), an FDA-approved treatment for rheumatoid arthritis, to bring back the pigment of one vitiligo patient; read more about that here. We are focusing on this approach to develop a number of new treatments, and hope to test them in patients soon. This requires funding, and the cooperation of pharmaceutical companies that produce good candidates for this treatment.

Vitiligo in children (Dr. Pearl Grimes). Dr. Grimes mentioned that children make up 20-30% of all patients with vitiligo and, like adults, are at risk for other autoimmune diseases like thyroiditis, celiac disease, and others. She talked about mimics of vitiligo, including tinea versicolor (a common skin infection that is easy to treat), nevus depigmentosus (a birthmark), and pityriasis alba (dry skin from eczema that becomes lighter). She discussed treatments like nbUVB/excimer laser, topical steroids, Protopic, and Elidel, topical vitamin D, as well as oral steroids to stabilize disease. She mentioned that she sometimes suggests that her patients use vitamins or other supplements, but warns that many supplements that “boost” the immune system (Echinacea, goldenseal, and astragalus) could be bad for you, since vitiligo is due to an already overactive immune system. For lip depigmentation she uses topical psoralen plus sunlight exposure, and had a very good response in a patient who visited from the middle east just during the summer. Finally, she discussed whether it is appropriate to use Benoquin to depigment children. In many cases, it makes sense to wait on making this very important, permanent decision. However in rare instances in children who have severe vitiligo that is not improving on treatment it may be appropriate, as sometimes the benefits outweigh the risks of the treatment.

Cost and insurance coverage for treatment (Dr. Amit Pandya). Dr. Pandya provided important information on the costs of vitiligo treatment. They are listed as follows:

Makeup, self-tanner (DHA) – these require multiple applications, and the cost varies significantly with the type and brand used.

Topical clobetasol (steroid) – typically $33-36, but recently seen as high as $300

Topical tacrolimus (Protopic) - $195-355

nbUVB in office – Each visit: private pay $175, medicare $80, self-pay $50-100

nbUVB unit at home – 6 bulb $2400, 10 bulb - $4500

Excimer laser – Each visit: $150-300

Tofacitinib/Xeljanz - $2729 per month

MKTP surgery - $2500-4000

He said that with nbUVB therapy to expect an average improvement of 25% at 3 months, 50% at 6 months, and 75% at 9 months. Over time, it is much cheaper to purchase a nbUVB unit than it is to get treatment at the doctor’s office if paying out of pocket. Insurance coverage is highly variable, and if your insurance isn’t covering the treatments you need, you can appeal to the company, talk to human resources at work to switch carriers, and/or talk to your elected officials to put pressure on insurance carriers to cover treatments for vitiligo. He closed by saying he was attending a walk-a-thon sponsored by the Dallas vitiligo patient group the following Saturday.

Testing HSP70IQ435A treatment in a model of vitiligo and melanoma (Dr. Caroline Le Poole). Dr. Le Poole discussed the role of stress proteins in our cells, which is normally to protect the cells from environmental stresses like heat. She found that the stress protein HSP70i is increased in affected skin from vitiligo patients, and that mice without that protein were protected from getting vitiligo. She also found that making small changes (mutations) in that protein changed its ability to worsen vitiligo, and that some of these changes even protected mice from getting vitiligo. She hopes that giving an equivalent mutated HSP70i to human patients with vitiligo will also protect them from getting new spots, and may even help get the pigment back in the old spots. They are now testing this as a potential therapy in pigs that get both melanoma and vitiligo together, and hope to transition the results into human clinical trials in the future. However developing therapies like this from scratch takes time, and it can take 10-20 years before a new treatment is approved for use in the clinic and readily available to patients. Though the first results seem encouraging, she needs to do more preclinical studies and then clinical trials, which are both time consuming and expensive to perform.

Genome-wide association studies of vitiligo (Dr. Richard Spritz). Dr. Spritz started by talking about how he became interested in the genetics of vitiligo. He was hooked on genetics when he was involved in finding the first human gene abnormality, which was in tyrosinase in individuals with a form of albinism. Based on that and other successes in studying albinism, Dr. Maxine Whitten, then-president of the Vitiligo Society, asked him to work on the genes that caused vitiligo. He resisted at first, since vitiligo was not a simple, single-gene problem, but likely involved many genes that worked together. However the human genome project made tackling this problem possible, and he began the work that is widely known today. He explained how genetic studies are done, described the 3 studies that he has performed, and then said that he will soon report 25-30 additional genes that influence the risk of getting vitiligo, doubling the number of known genes to date. These 50-60 genes appear to account for half the risk of getting vitiligo.

The results indicate that vitiligo is clearly an autoimmune disease, and that many of the genes are shared with other autoimmune diseases. He mentioned that the genes discovered for vitiligo and juvenile diabetes are VERY similar, which suggests that they have similar causes, and may explain why family members of patients with vitiligo often have juvenile diabetes. Interestingly, versions of many genes that increase the risk of vitiligo simultaneously decrease the risk of melanoma, helping to explain why vitiligo patients seem to have a decreased risk of this deadly skin cancer. Finally, he mentioned that the autoimmune disease lupus is 100 times less common than vitiligo, but has 100 times MORE funding than vitiligo, largely due to patient advocacy that got the attention of congress. So patients should advocate for themselves so that vitiligo gets the funding it deserves, leading to better treatments!

Poster presentations. Next, clinicians and researchers who presented posters at the meeting gave a brief summary of their work, and took questions from the audience. Here are the posters:

  1. Kirsten Webb, MD- TNF-α inhibition to stabilize disease and set the stage for repigmentation in progressive vitiligo
  2. Kyoungchan Park, MD- Nutritional Therapy for Vitiligo
  3. Jitender Taneja, MD- Homocysteine levels correlated to severity of vitiligo and NBUVB phototherapy
  4. Andreas Overbeck, MD- Correct use of UVB therapy in Vitiligo
  5. Andreas Overbeck, MD- Stimulated punch grafts: A novel approach for segmental vitiligo
  6. Caroline Le Poole, PhD- Vitiligo patients experience increased perceived stress
  7. Stanca Birlea, MD- Proliferation, migration and cell death processes are significantly modulated by narrow band UVB in the hair follicle bulge of vitiligo patients
  8. Prashiela Manga, PhD- Cellular stress and the onset of vitiligo
  9. Vivek Natarajan, PhD- Epidermal tissue enantiostasis maintains physiological functions upon melanocyte loss in vitiligo

Questions for the panel of experts (Harris, Grimes, Pandya, Le Poole, Spritz). Finally, time was allowed for questions from the audience, which were largely centered around current and future treatments, as well as whether there was a role for vitamins, supplements, or diet in helping treat vitiligo. In summary, there is very little evidence to suggest that vitamins, supplements, or dietary changes help vitiligo, while in contrast, current therapies are proven and highly effective. In the absence of evidence from clinical studies, it is just as likely that a vitamin, supplement, or dietary change will hurt vitiligo as help it, so patients were discouraged from blindly taking too many things. However there is still a lot to learn about vitiligo, so we may discover that some things are helpful in the future and, in general, if something is working for you and it’s safe, then it makes sense to continue taking it.

The meeting was a huge success, and those who attended, from clinical and research experts to patients, seemed very happy that they attended. After the meeting ended, I led a meeting for a group of vitiligo researchers focused on strategizing how we can work together to make progress in vitiligo even faster. The future is bright for vitiligo, and we hope to have better treatments soon!

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