In This Issue
Vitiligo: A New Decade
Funding Campaign Update!
Medicare Coverage for
What's On Your Mind?
Medical News Updates
Research & Clinical Trials
Bibliography and Sources
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VSI Medical and Scientific
- Pearl E. Grimes, M.D., Committee Chair
- Ted A. Grossbart, Ph.D.
- Sancy A. Leachman, M.D.
- I. Caroline Le Poole Ph.D.
- Mauro Picardo, M.D.
- Nanette B. Silverberg, M.D.
- Richard A. Spritz, M.D.
- Alain Taieb, M.D., Ph.D.
- Wiete Westerhof, MD, Ph.D.
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Vitiligo Support International
P.O. Box 3565
Lynchburg Va 24503
Message From the Executive Director
Dear VSI Members, Friends, and Donors,
What are your hopes and expectations for the future of vitiligo? Personally, I believe that in order to have realistic expectations, it’s important to look back and ask ourselves, “Are we better off now than we were a decade ago?” Unquestionably!
Research in vitiligo is at an all-time high. In fact, a quick check for vitiligo clinical trials shows 32 studies either currently, or soon-to-be, recruiting!
One Brazilian pharmaceutical company, Aché Pharmaceutical Laboratories announced this past year their plans to invest $100 million in experimental therapy for vitiligo!
Multiple pharmaceutical companies are investing in research on targeted vitiligo treatments such as the JAK inhibitors reported on in VSI’s newsletters.
Another recent discovery has been identifying the cause for relapse after successful treatment. It turns out that even after successfully bringing pigment back, memory cells (resident memory T cells) remain, which explains why on relapse, many times pigment is once again lost in the exact same location.
Dr. John E. Harris, MD, PhD, Associate Professor, Department of Dermatology UMass Medical School, is testing a new therapy that not only targets and blocks the memory signaling but also removes these memory T cells. Dr. Harris is optimistic that this treatment could be in testing within the next 2 years, and available to be prescribed within 5 years!
At a time when pharmaceutical companies are dedicating and investing more research dollars into vitiligo than ever before, I am also personally encouraged by the increased interest in understanding the emotional impact of the disease.
VSI continues to receive requests from pharmaceutical companies for information on the “patient’s point of view” on a wide range of subjects, not the least of which is the burden of the disease and impact on the quality-of-life.
As it turns out, it’s not just about the pigment. It’s not just cosmetic. Research has confirmed that the emotional impact is both real and quantifiable. Regardless of the personal decision of whether or not to treat the physical symptoms, in order to heal the person, the emotional impact must be respected, validated, and addressed.
I concur with Dr. Harris:
The Future is Indeed Bright for Vitiligo!
“The future is bright for vitiligo,” he said. “I like comparing it to other disease like atopic dermatitis and psoriasis because both of those diseases have targeted therapies that really have changed what it means to manage difficult patients. Vitiligo is next in line.” John Harris
Funding Campaign Update
I want to begin by thanking each and every donor for your amazing support during the past year. You stepped forward in mass and assured me that you believe that VSI is important on the landscape of vitiligo. You’ve touched me with your encouraging thoughts and words about how VSI provided information and support at a time most needed in your lives – and believing in the importance of “paying it forward” so that others can continue to rely on VSI for years to come.
I am always especially touched by the stories from parents …..
My daughter had an unusual case of vitiligo where she lost pigment after a beach trip in middle school. We didn’t know what to do. Only by having access to the information on the VSI website were we able to get a physician referral without feeling intimidated or exploited.
A few months of home light treatments eventually achieved a nice level of repigmentation. She doesn’t even treat anymore, but I understand how important it is for VSI to continue to offer the same level of support to others. That is why I continue my support via payroll deduction. VSI Long-Time Member and Donor: S.A.
We set as our goal to raise $100,000 to hire additional support staff to enable VSI to meet the growing demands on the organization, maintain current programs and services, and cover projected specialized IT and website expenses relating to the migration incompatibilities of multiple features from the original custom built website.
We’ve received feedback from many of you identifying missing favorites such as the member registries and photo galleries. Other compatibility problems affecting membership and subscription integration, though less obvious to the eye, continue to take an enormous toll on staff time.
As of our Fall Newsletter update, we’d received around $38,000. Though we’ve not yet met our goal, having now achieved nearly 70%, we’re still moving toward the finish line! Donations continue to arrive almost daily which gives me reason to hope, and believe, that the goal is achievable and will be met!
Moving forward, our plan is to prioritize and proceed with the most critically needed services having the greatest impact on the organization. We’ve hired a developer to begin the website custom coding that will hopefully begin to ease the admin backlog created by all of the manual membership and donation entries.
It’s difficult to predict at what point we’ll be ready to begin the interview/hiring process. That will be determined by a combination of progression of incoming funding and admin time availability to oversee the process.
If you’ve not yet contributed, it’s most definitely not too late! If you’ve already contributed but feel led to increase your support, I cannot stress enough, that each and every donation, large or small, makes a difference.
What we really need is 100% support at some level.
We Can Not do This Without You!
|Recurring Monthly Donation
We would like to take this Opportunity
to Acknowledge the Following Donors:
Lead Campaign Donor
Monthly Recurring Donors:
New or Omitted on Last Report
David and Sharon Boone (Long-time Recurring Donors)
First Time Donors - Long-Time Members
*Sara Rounce – VSI member since 8/17/01
Richard Suzuki – VSI member since 08/11/2002
Paul Mason – VSI member since 01/02/03
Linda Nobles – VSI member since 05/24/03
Samuel Perez - VSI member since 4/7/03
Lynn Cassity – VSI member since 11/24/03
Susan Covi – VSI member since 6/24/04
*Brian Cassar – VSI member since 8/3/2004
Mike Baerthel – VSI member since 8/14/05
|*Also Recurring Donor
Camp Discovery 2019!
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.
- All children must be referred by their dermatologist or pediatrician. Parents can copy the Camper Referral form and take it to their physician. Submission Deadline: April 10, 2020 or when space is full.
- There is no fee to attend, all costs including transportation (if necessary), are provided by the AAD through generous donations from its members, outside organizations, and individuals.
This year the Academy is proud to offer six camping sessions for children 8-16 years old.
Minnesota, June 21-26
Minnesota, July 5-10
Texas, August 2-7
Connecticut, August 9-15
Pennsylvania, August 15-21
Washington, August 24-28
For more information about attending or volunteering:
Contact Janine Mueller at [email protected]
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Calling all Medicare Vitiligo Patients!
VSI regularly hears from patients from all over the United States who have been denied insurance coverage for their vitiligo treatment. VSI has been fighting this battle on a national level for several years. While we are definitely making progress, it’s been a slow road.
Part of the problem is that currently there is no accepted standard for coverage of vitiligo treatments. Each company has their own policies and guidelines, many times based on outdated and incorrect information.
What most people may not realize is just how much private insurance coverage can be affected by Medicare policies. Over 55 million Americans are now covered by Medicare or Medicare Advantage, making it the nation’s largest health insurance program. Consequently, many, if not most, insurance providers establish their baseline standards and procedures to follow the Medicare model.
Medicare has agreed to meet with us – but requires that we bring Medicare letters of denial for a vitiligo treatment.
If you are reading this newsletter and you, or someone you know, was denied coverage for a vitiligo treatment by Medicare, please contact VSI immediately. You could help make a difference for future insurance coverage for ALL vitiligo patients! Click Here to Contact VSI
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What's On Your Mind?
Q. I am preparing for an engagement ceremony with a woman whose mother and brother have vitiligo. She doesn’t have vitiligo, but I am worried that she might develop it, and I’m also worried about our future offspring. I am reconsidering my decision to get married to her. I have two urgent questions for you.
- Is there any possibility that she could develop vitiligo?.
- Is there any chance that our future offspring could develop vitiligo?
- Unfortunately, there are too many factors involved to predict who will, or will not, develop vitiligo.
Yes, vitiligo is a hereditary, autoimmune disease, meaning you must carry the genes in order to develop it. However, even though the genetic or biological components may play a significant role in a person’s susceptibility to vitiligo, research indicates that this genetic predisposition may factor as little as 30% toward disease development, with the environmental factors weighing in closer to 70%, as evidenced by identical twins. Even though they share identical DNA, both develop vitiligo only 23% of the time. Research indicates that only 5% to 7% of children will get vitiligo even if a parent has it.
Another factor is the age of onset. Research indicates that earlier disease onset suggests a greater genetic factor. If the mother and/or brother of your potential bride-to-be developed vitiligo as children, they likely have more genetic risk factors than your potential bride-to-be, who has not developed vitiligo.
This previous VSI Newsletter article helps explain the many factors involved with developing vitiligo.
Why Did I Get Vitiligo? No one else in my family has it.
Medical News Updates
Highlights of recently-published medical
articles on vitiligo and its treatments
Gluten and Inflammatory Skin Diseases:
Is There a Link?
Vitiligo is an autoimmune disease that occurs when inflammatory cells of the immune system attack the body’s own melanocytes (pigment-making cells), resulting in pigment loss. One topic of ongoing interest is whether there is any potential link between diet and inflammatory skin diseases like vitiligo, atopic dermatitis (AD) (eczema), psoriasis, and/or alopecia areata.
A recent study conducted at the University of Toronto by Dr. Aaron Drucker and his colleagues in the department of dermatology at the Warren Alpert Medical School at Brown University looked more closely into the relationship between consumption of gluten and an increased risk of developing inflammatory skin diseases.
Dr. Drucker noted that a great number of his patients with psoriasis or AD ask about the role that diet, specifically gluten, has on their skin disease.
Using food frequency questionnaires from the “Nurses’ Health Study ll,” known for the high-quality data collected from participants over a period of two decades, he and his colleagues conducted a retrospective study on increased gluten intake and disease outcome.
The studies included 85,185 participants with psoriasis, 85,324 with psoriatic arthritis, and 63,443 with AD.
They compared the highest vs lowest gluten intakes, and found no association between increased gluten intake and any disease outcome, suggesting that elimination diets do not impact disease onset or progression for patients with no known food allergies. This would not be the case for a person with celiac disease or gluten sensitivity, in which case consuming even the smallest amount could be detrimental.
The authors noted that “since the data available on diet were collected during adulthood, we focused on cases where the skin disease began in adulthood.”
Safety and Efficacy of Vitiligo Treatments
in Infants under the Age of 2 Years
A Chinese study has just been released seeking to assess the efficacy and tolerability of topical calcineurin inhibitors (TCIs) for vitiligo in infants under the age of 2 years. The infants were randomly selected to receive either tacrolimus ointment 0.03% (aka Protopic) or pimecrolimus cream 1% (aka Elidel). The topicals were applied twice daily for a period of six months.
Forty-six infants participated in the study. Some level of response was achieved by 100% of the infants. Sixty-nine percent of the infants in the tacrolimus group achieved greater than 50% repigmentation, compared to only 65.2% in the pimecrolimus group.
The head and neck location was the most responsive, with 70% of the participants achieving greater than 50% repigmentation, this was followed by 64.3% on the trunk, and 50% on extremities.
The response rate among those with non-segmental vitiligo was 74%, compared to 28.6% for those with segmental.
With a very low incidence of adverse reactions, such as mild redness, they concluded that topical tacrolimus ointment 0.03% and pimecrolimus cream 1% should be considered both safe and effective as a therapeutic option for infants under the age of 2 years with vitiligo.
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Research & Clinical Trials
New Topical Jak Inhibitor Study
Brooklyn New York
Phase 3 Clinical Trial Program Evaluating
Ruxolitinib Cream in Patients with Vitiligo
SUNY Downstate Health Science University
450 Clarkson Avenue
Brooklyn, NY 11203
Research shows that when the JAK signaling pathway becomes over-active, it drives the inflammation associated with triggering the onset of, and subsequent progression of vitiligo. The goal of the ruxolitinib, a topical, nonsteroidal, anti-inflammatory, Jak inhibitor, is to reduce or block this process.
Participants will be randomized into one of two groups for a 24 week, double blind period.
Group 1 will apply 1.5% ruxolitinib cream twice daily.
Group 2 will apply a topical control cream twice daily.
All patients who successfully complete the 24 week test period, including those that received topical control will be offered the 1.5% ruxolitinib treatment (twice a day) for an additional 28 weeks.
Key Inclusion Criteria:
- Clinical diagnosis of non-segmental vitiligo.
- At least 0.5% facial depigmentation.
- At least 0.3% depigmentation on the body.
- May not exceed 10% total body surface area depigmentation.
- Must discontinue all vitiligo treatments from screening through the final safety follow-up visit.
- Over-the-counter preparations deemed acceptable by the investigator and camouflage makeups are permitted.
- Must be willing to take appropriate contraceptive measures to avoid pregnancy or fathering a child for the duration of study participation.
Key Exclusion Criteria:
- No pigmented hair within any of the vitiligo areas on the face.
- All forms of vitiligo other than non-segmental.
- May never have used any depigmentation treatments.
To participate, or for more information,
Omobola Onikoyi, DO, MSc or Kristina Derrick MD, MSc
718-270-2991 or email [email protected]
Online Depigmentation Survey
Calling all Depigmentation Patients!
VSI is assisting Simi Cadmus, MD, Pooja Reddy, MD, and Ammar Ahmed, MD, from Dell Medical School, at the University of Texas at Austin, who are seeking feedback from those who are either currently in the process of, or those who have completed, the depigmentation process.
VSI is acutely aware of the difficulties many of our members have experienced when seeking a physician to prescribe depigmentation therapy.
We need you to help physicians better understand the impact
of this therapy and to provide first-hand insight into the patient perspective!
Completing a brief online survey
Respondents must have either:
♦ Completed the depigmentation therapy
♦ Currently be undergoing depigmentation therapy
If you qualify and would be willing to complete a brief survey, click here.
Research Study in New York City
With & Without Vitiligo
Researchers in New York are seeking volunteers who have vitiligo, as well as those who do not have vitiligo. If you have vitiligo and would like to participate, bring a friend or family member who does not have vitiligo to participate as well!
Volunteers must reside in the NYC area
Volunteers must come to two (2) study visits at the clinic.
This is not a treatment study.
Researchers will be comparing pigment cells from those with vitiligo to those without vitiligo, to identify differences that may contribute to the progression of vitiligo, which may help to develop improved vitiligo treatments.
Study visits will take place at:
The Dermatology Clinical Studies Unit
NYULMC Ambulatory Care Center
240 East 38th Street, 11th Floor
New York, NY 10016
For more information, please contact:
Susan Cataldo, Research Coordinator:
212-263-5244 or email: [email protected]
Earn Funding for VSI with Amazon and eBay
Online Shopping Can Benefit VSI!
Amazon Shopping for VSI
With thousands of items in addition to books, Amazon.com is a one stop-shopping center! Simply shop through the above link (bookmark it for easy reference) and VSI will earn fees, based on a percentage of the sale. The more items purchased by members, the higher the percentage!
Tobi Cares Donation Program
Tobi is an online women's clothing design label that brings LA style from its design studio direct to its online clothing store at tobi.com. Go to Tobi Cares and sign up for VSI to receive 1% of your purchase amount.
iGive.com offers access to free shipping deals and exclusive coupons, on top of the great deals you'll find every day through its network of 1,000+ stores, including Pottery Barn, REI, Staples, Petco, Expedia, Best Buy, QVC and many more. Best of all, up to 26% of your purchase at each store is donated to VSI at no cost to you! Let friends and family know so they can support VSI, too. Click register for iGive to get started today, and download the iGive button to automatically benefit VSI whenever you go to an included store.
GOODSEARCH SHOPPING AND DINING!
GoodSearch and Goodshop, like iGive, offers coupons, discounts, and donations to VSI through its network of over 5,000 stores. Just click the link above to get the savings started and the donations flowing!
* Vitiligo Support International Inc. (VSI) is a participant in the Amazon Services LLC Associates Program, an affiliate advertising program designed to provide a means for sites to earn advertising fees by advertising and linking to Amazon.com.
Support VSI Through Ebay
Support VSI with eBay!
Do you sell items on eBay, or want to hold an online garage sale? If so, consider donating a percentage of your proceeds to VSI through eBay’s Giving Works program! It’s easy – when you list an item through a Giving Works listing, choose to send 10-100% of the final sale price to VSI. Your listing will have a special placement and designation. You’ll receive a proportional fee credit from eBay, and will also receive a tax donation receipt when the donation is deducted from your funds received. It’s a great opportunity to make some money for yourself and for VSI, so clean out those closets and garages and get selling!
To Learn More About VSI's Giving Works: Click here