Dear Members and Friends of VSI,

When the days are long, and requests for services and support seemingly unrelenting, it can be difficult to fully appreciate the impact of VSI’s outreach.
But each fall, as I reflect on the past year, I am once again encouraged by the progress.

Thanks in large part to VSI’s recruitment efforts for vitiligo research studies, we now know far more about specific vitiligo genes and pathways, which has resulted in major drug companies pursuing generalized vitiligo as a treatment target.

The President of the American Academy of Dermatology and staunch vitiligo advocate, Dr. Mark Lebwohl, has joined VSI in its battle to abolish the discriminatory practices of the insurance industry that limit or deny coverage for vitiligo. Since he successfully led this same crusade many years ago on behalf of psoriasis, we appreciated the recent opportunity to collaborate and strategize with Dr. Lebwohl, and to advocate with him during Capitol Hill visits with key legislators.

VSI continues to partner with an international group of world-renown vitiligo clinicians, researchers, and scientists, bringing the voice of the patient to this consortium. As the patient representative, we’ve worked to open the lines of communication between physicians and patients, thereby bridging the gap between....

the erroneous preconceived notion that vitiligo doesn’t hurt,
and the reality of the emotional burden of this disease.

As part of this process, we are addressing the vast disconnect between viable, available, treatments and the paltry number of patients with positive treatment outcomes. The concept we strive to convey is that compliance and eventual outcome is less about a prescription, and more about communication, respect and understanding.

VSI’s roots are deep in patient support – but it’s important to recognize that VSI is far more than a support group. VSI not only provides support and educational resources to patients from all over the world, but

VSI is the only vitiligo organization actively engaged in
national level collaboration working to improve the future of vitiligo.

As far as we’ve come, the unmet needs of this community are enormous. Vitiligo has been in the shadows of other more successfully-funded diseases for far too long. With the strong and unified financial support of the community we serve, we can make a difference.

In the words of Mahatma Gandhi, “You must be the change you wish to see in the world.”
Your investment in VSI is your commitment to a better future.

Please Consider Supporting VSI Today.

Sincerely,

Jackie Gardner
Executive Director

2016 Save the Date:
Camp Discovery!

The American Academy of Dermatology’s (AAD) Camp Discovery program is for children ages 8-16 who have a chronic skin disease. Under the expert care of dermatologists and nurses, Camp Discovery gives campers the opportunity to spend a week with other young people with skin conditions having fun and participating in activities such as swimming, horseback riding, arts and crafts and many more. There is no fee to attend, all costs including transportation, are provided by the AAD through generous donations from its members, outside organizations and individuals. 

• All children must be referred by their dermatologist and referral forms will be available on campdiscovery.org, beginning in mid-January.
  
  
• The volunteer application is also available on campdiscoveyr.org.  Applicants must be at least 18 years of age and provide one letter of recommendation.
  
  
• There is no fee to attend, all costs including transportation, are provided by the AAD through generous donations from its members, outside organizations and individuals.

  June 19-24: Camp Little Pine, Crosslake, MN (ages 10 -14)     
  June 20-24: Camp Reflection, Carnation, WA (ages  9 -16)
  July 3 – 8: Camp Big Trout, Crosslake, MN (ages 14 -16)
  August 7-12: Camp Dermadillo, Burton, TX (ages 9 -15)
  August 13 -19: Camp Horizon, Millville, PA (ages 8 -13)
  August 7-13: Camp Liberty, Andover, CT (ages 8 -16)

For more information about attending or volunteering:
Visit www.campdiscovery.org, or contact Janine Mueller at 847-240-1737, or [email protected]

How Can I Tell if My Treatment is Working:
What Should I Expect?

Many factors are involved with treatment response. Some people will begin to see results within 3 to 6 months. Others may not see results for 8 months. The rule of thumb is that you will need to allow at least 3 to 6 months of consistent use before you begin to see results from ANY treatment. Additionally, you should expect to treat for up to two years or longer in order to see good results. If you try a treatment for 3 months and then quit because you saw no results, chances are you needed more time. It is vital to use any treatment consistently and correctly. If you don’t use a treatment as directed, it can take much longer to work or may not work at all.

Treatment results will vary based on multiple factors.

• Area of the body being treated:
  The face and neck generally respond quite well, while feet and hands are more difficult and take more time.
  
  
• Duration (length of time) of depigmentation:
  Generally the earlier you treat, the better the response. Even feet and hands have been shown to respond well when treated very early. However, you should never be discouraged from trying a treatment simply because of the age of the depigmentation. With patience and dedication, you can still regain pigment with mainstream treatments, and if unsatisfied with those results, there are always surgical treatments.
  
  
• Age of patient:
  Children typically respond better than adults.
  
  
• Type of vitiligo:
  Generalized vitiligo typically responds best to mainstream treatments; however, even segmental vitiligo has been shown to respond well if treated quite early.
  
  
• Treatment protocol:
  Combination treatments (such as a topical and light) typically produce results more quickly than a monotherapy treatment, such as light or a topical, being used alone.
  
  
• Frequency of use of treatment:
  Topicals are generally prescribed to be used twice daily.
  Light treatment is most effective when used at least 3 days a week.
  
  
• Underlying conditions:
  If a person has lost quite a bit of pigment in a very short time, it may be necessary to determine and treat the cause. Some underlying conditions frequently seen with vitiligo are autoimmune thyroid disease, type 1 diabetes, rheumatoid arthritis, celiac disease, and *vitamin D deficiency.
  
  
• Disease Activity:
  If the vitiligo is spreading quickly with a fair amount of pigment loss, it may be necessary to use some type of systemic treatment to stabilize the vitiligo. A topical treatment can only treat the area to which it is applied. It cannot stop new lesions from forming. Depending upon the degree and activity of pigment loss, some doctors will prescribe a corticosteroid (either oral or injection) to stabilize. Full body light treatment can also suppress the immune response and stabilize vitiligo.
  
  
• Extent of depigmentation:
  Topical treatments are generally prescribed as a first line of therapy for those with less than 20% of depigmentation. However, for those with greater pigment loss, light therapy is generally more efficient.
  

* Multiple studies have pointed to a possible connection between vitiligo and vitamin D levels. One study of a village in Romania found many families with vitiligo and other autoimmune diseases who also had a genetic abnormality in a vitamin D receptor (VDR) gene. A similar genetic abnormality in the VDR gene was found by Chinese investigators in 749 patients with vitiligo, adding additional evidence of a connection between this gene and vitiligo.

A 2010 US study also found evidence of a potential vitamin D linkage. A majority of vitiligo patients were found to have low to very low levels of vitamin D. Also, in this group over 13% had secondary autoimmune disease. The study authors concluded that very low vitamin D levels would be a good screening criteria for the presence of additional autoimmune disease in vitiligo patients.

For additional information on diagnostic tests for vitiligo: Click here

Treatment Expectations

Many people become discouraged and either begin to slip away from their daily routine, or even discontinue treatment, because they didn’t have a clear understanding of the process and know what to expect from their treatment.

Vitiligo is a genetic autoimmune disease where the body mistakenly targets and attacks its own melanocytes (pigment-making cells) leaving patches of depigmented skin. Melanocytes are mostly found at the base of hair follicle, but can also be found in the outer layer of the skin, or epidermis.

Regenerating new pigment takes time. First, the treatment needs to stop the immune response that is killing the melanocytes, then new melanocytes need to form in the hair follicle, then they have to slowly work their way up from the base of the hair follicle to the epidermis. Each step of the process can take several weeks, if not longer. So patience will be the key to success.

What does new pigment look like?

You might first see a tiny freckle appearing near a hair follicle somewhere inside of the depigmented area. Over time this freckle will continue to grow bigger and hopefully other freckles will also appear nearby. In time, these freckles will grow together, eventually filling the depigmented area.

The other way new pigment can begin is when melanocytes from the outer
edges of the depigmented area migrate inward, slowly closing the depigmented area from the outside.

Photos used with permission from Dr. Anantha Prasad Holla, Director: MelanoSite;
Center of Advanced Vitiligo Treatment and Collaborative Pigment Cell Research based in Delhi and Mangalore.

As new pigment begins to appear, some people will experience hyperpigmentation (darker than normal skin color) as seen in the After photo above. This ordinarily subsides in time and the color will even out to the normal skin tone.

Treatments

There are 3 primary types of treatment used for repigmentation.

• Topicals: corticosteroid, Protopic/tacrolimus, Elidel/pimecrolimus 
  These suppress the melanocyte destruction
  
  
• Phototherapy: NB-UVB, UVA, Excimer laser 
  These promote melanocyte repopulation
  
  
• Surgical: tissue and cellular grafts 
  These replace the areas of vitiligo with normal skin and/or cells

What to expect from a topical (ointment or cream) treatment:

Topical treatments alone usually take longer to produce results than either light alone or a topical combined with light. With a topical alone, results might not be evident for 8 months or longer. Topicals combined with light generally produce results even faster than with light alone. Once again, it is very important for topical treatments to be used as prescribed with regard to frequency of treatment, method of application and how long the topical should be left on prior to washing.

How do I use light as a treatment?

When using phototherapy such as NB-UVB, the goal is to expose the depigmented area to the light source long enough so that within 12-18 hours after the light exposure you see a nice pink color. This is similar to the reaction you see when exposing your skin to sunlight. Remember that depigmented skin is more light sensitive than your non-affected skin. You should always begin conservatively so as not to burn, then increase your time slowly until you gain the desired effect.

You never want to burn (turning red rather than pink) pigmented OR depigmented skin, as it is unhealthy for your skin and this type of trauma can actually cause vitiligo to spread or worsen. As a rule of thumb, you treat one day, the next day you should see a light pink color. If the pink is gone the following day, then you can treat again.

Treating 3 times a week on non-consecutive days is considered optimal by most. Research has shown that a more aggressive treatment schedule (3 or 4 days a week) will achieve more pigment in a shorter time period than 1 or 2 days a week. However, when comparing the results based on the actual number of treatments, those only treating twice a week, eventually achieved the same degree of repigmentation; it just took longer. While those only treating once a week did achieve repigmentation over time, when compared to those treating more frequently, the results never quite achieved the same degree of repigmentation.

How long are NB-UVB treatment times?

Beginning NB-UVB treatment times would likely be around 15-20 seconds. If you do not see any pinkness within 12-18 hours, you can use NB-UVB again the next day and increase the time by 5-10 seconds, and so on. Once you reach a level where you get pink but do not burn, and the color goes away within 24-36 hours, you can maintain that time until you no longer achieve pink. Some people will remain at the same level for weeks or months. Once you no longer see pink, you probably need to increase your time again. Always take care when increasing time that you do not increase too much. It is better to take an extra day to achieve the desired results than it is to risk burning.

How long should I expose my skin if I am using sunlight to treat?

That depends on several factors such as the time of year and your latitude (proximity to the sun). The closer to the equator you are, the stronger the rays. Sunlight generally takes a little longer exposure than NB-UVB because sunlight contains the full light spectrum rather than only the therapeutic rays of NB-UVB. As mentioned above, remember that depigmented skin is far more sensitive to light than your unaffected skin, and always begin sun exposure very conservatively and build up in order not to burn. Depending upon the time of year and the climate, a general rule of thumb would be to begin with around 10 - 15 minutes of sun, increasing the time minimally as needed to maintain the therapeutic dose (getting pink).

Photograph Your Progress!

One of the best (and most accurate) ways to tell if (or how well) your treatment is working is to begin with good photos of the areas you are treating. If you ever become discouraged with your progress, once you go back and see where you began, most likely you will be quite surprised and encouraged!

Many VSI members have posted pictures of their treatment progress in the member photo galleries. If you ever question how well treatments work, you should visit the galleries.

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What's On Your Mind?

Q. My doctor prescribed Protopic and NB-UVB for me.
Should I have the Protopic on my skin while using the light?

1. While having Protopic on your skin during a light treatment may or may not reduce the therapeutic effect, it will not help.
   
   Some topicals need to be on the skin when using light because they are "light-sensitizing." This is the case for example, with PUVA treatment. PUVA stands for Psoralen + UVA (light). A psoralen is a light-sensitizing drug and needs to be either taken orally, or applied to the skin (topically), just prior to exposure to the light treatment or exposure in order to make the skin more sensitive and responsive to the light.
   
   Although Protopic does make the skin more sensitive in some individuals, it is not classified as a light-sensitizing drug. Vitiligo is an autoimmune disease where the body mistakenly identifies its own melanocytes (pigment-making cells) as a foreign substance and attacks and kills them. When (and where) Protopic is applied to the skin, as an immunomodulating drug, its function is to block (turn off) the immune response, allowing the melanocytes to again flourish.
   
   Protopic's ability to block the immune response is a somewhat cumulative process. It's not immediate like a psoralen, and it does not need light in order to work. If applied daily, after a period of several weeks or even months, the melanocytes once again begin to repopulate the previously depigmented area.
   
   By adding light to this or any therapy, you are increasing melanocyte stimulation. NB-UVB stimulates melanocytes whether or not Protopic is being used. Protopic suppresses the immune response where applied whether or not light is used. One is not dependent on the other.

Q. I am using NB-UVB light, butwearing goggles. Is it safe to remove the goggles to expose my eyelids to the light?

1. Research has shown that NB-UVB light does not penetrate the eyelid. As long as no psoralen is being used (as with PUVA), the patient is old enough to understand they must keep their eyes closed at all times, and has an annual eye exam, it should be safe to expose the eyelid to NB-UVB light.

Medical News Updates

Highlights of recently-published medical
articles on vitiligo and its treatments

Permanent Hair Dyes and Vitiligo

Over the years, VSI has reported both anecdotal and clinical information connecting an increased risk of vitiligo with the hair dyes now used by an estimated 70% of women in the US. While the potential link had been indicated in previous case reports, a November 2015 study using over 30 years of collected data showed a direct correlation between use of the permanent hair dyes and vitiligo. The highest risk appeared to be among those who started using the dyes at an earlier age and for those using them for the longest period of time.

The authors cited a 2013 vitiligo outbreak in Japan among 16,000 users of a skin-lightening cream containing a phenol called rhododenol. While pigment loss where the cream was applied was to be expected, many users also developed depigmentation on remote areas of their bodies. This led researchers to believe that these type of phenols have the capacity to trigger the same type of systemic autoimmune response seen by those using monobenzyl ether of hydroquinone (MBEH) to depigment the entire body. This reaction is consistent with the observation of systemic pigment loss (not limited to the scalp) from the use of hair dyes.

The study concluded that common household products could be an environmental risk factor triggering a systemic autoimmune response (pigment loss on areas of the body not exposed to the product) in those predisposed to vitiligo. Further research will be critical to identifying the specific chemical compounds in hair dyes and commonly used products which can be linked to vitiligo.

Editor’s Note:

Previous VSI newsletters have included the following list of chemicals known to cause pigment loss.

Butylated Hydroxytoluene (BHT);
P-Phenylenediamine  (aka- para-phenylenediamine - ppd or P-Phenylenediamine)
P-Amonophenol
4-Amino-2-Hydroxytoluene        
M-Aminophenol
Benzyl alcohol
P-Aminophenol

Source: Ray Boissy, Ph.D., Professor of Dermatology & Cell Biology and
Director of Basic Science Research at the University of Cincinnati College of Medicine

Scenesse Phase ll Preliminary Results and
Update on North American Program

Scenesse (known generically as afamelanotide) is a brand name drug developed for vitiligo by Clinuvel Pharmaceuticals. The product, about the size of a grain of rice, is implanted by a physician into the fatty area of the hip and works by activating the production of melanin in the skin. The effects become visible approximately 2 days
later as the skin begins to darken.

The company cites goals of improving the intensity and extent of repigmentation and reducing overall
treatment time, thereby reducing the financial and scheduling burdens of current treatments, which
can include NB-UVB therapy several times per week for 18 months or longer. They also hope to improve
the long-term retention of pigment.

The drug has been tested in multiple trials with participants split into two groups: one receiving
combination therapy treated with NB-UVB and the Scenesse implant, and the other, a monotherapy
group receiving NB-UVB alone.

The combination therapy resulted in much greater repigmentation on the face and upper extremities,
and results were seen, on average, 20 days earlier than in those on NB-UVB phototherapy alone.

In December 2015, Clinuvel released two updates:

North American update:  The program is reporting positive results and assessments from both physicians and patients. They noted that as seen in previous Scenesse studies, those with darker skin complexions seem to respond best. The company is working closely with the FDA to complete the many clinical protocols, which currently include a six-month placebo-controlled preclinical study to further demonstrate the ongoing safety of the drug protocol.

Although another two or three advanced clinical trials are anticipated prior to submitting a new drug application in the US, the testing centers and dates have not yet been announced. Clinuvel will notify VSI, and we will post updates, once additional information is available.

Preliminary Results of Phase ll Singapore Study: Clinuvel is pleased with the positive results being reported from Singapore, specifically chosen as a testing site in order to better evaluate a “rigorous protocol tailored to darker skin types where we have seen the most promising clinical results to date,” Clinuvel’s Director of Clinical Affairs, Dr. Emilie Rodenburger said.

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Research & Clinical Trials

Phototherapy Study in Baltimore, MD.

Pilot Study In Boston, MA.

Segmental Vitiligo Study in Detroit, MI. and Worcester, MA.

Autoimmune Vitiligo Study in Detroit

Needling Clinical Trial in New Jersey

Melanocyte-Keratinocyte Transplant Procedure
Opportunity in Detroit!

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