Dear VSI Members, Friends, and Donors,

With the emails, phone calls, meetings, conference calls, regulatory registrations, licenses, renewals, funding requirements, donor relations, bookkeeping, IRS filings, ongoing education, research, deadlines, newsletters ..... and other associated day-to-day responsibilities of running a nonprofit organization like VSI…

....Many times I've stopped to ask myself,
"Why am I still here?
Is VSI really that important?"

Nonprofit work is not easy. There are days filled with recognition, accolades, and promises of great things to come. But the road can also be rocky with unmarked pitfalls of deception, betrayals, and broken promises.

There are a lot of expectations from a lot of entities. For every pat on the back, there are a great many more judgements about what you’re not doing, meetings you’re not attending, or collaborations you’re unable to be a part of ….. which can beat you down on the best of days.

No one knows better than I all that VSI is unable to do or provide. We are not magicians. We can’t clone our manpower. When you are in our position, you have to prioritize to keep your head above water. As the saying goes, you can’t be all things to all people. Accept that. Resources and services require funding which doesn’t grow on trees.

Nonprofit Burnout

According to the National Council of Nonprofits, for those running nonprofits, “burnout is real, and it’s widespread.” Running an organization like VSI with extensive demands, and chronically limited funding and manpower, can take an enormous toll on the health and well-being of those responsible. I’ve been told that you have to have heart to stay in a position like this. I suppose there’s truth in that, as my passion for this cause comes from a very deep place in my heart.

Each time I am given the opportunity to participate as a consultant on an advisory board, steering committee, or project such as the recent FDA patient panel, and speak on behalf of, or provide insight into the mindset of vitiligo patients, I am taken back to my roots.

My journey from vitiligo diagnosis to VSI most definitely didn’t begin with a vision or a dream. I have a very deep and personal connection to the needs of this community, borne of the emotional scars earned during my own vitiligo indoctrination.

I am always honored when asked to be a vitiligo representative and to share the experiences that so many of you have shared with VSI over the years. These stories both individually, and especially collectively, serve as a powerful tool for raising awareness by offering valuable first-hand insight into what it’s like to live with a disease like vitiligo.

Bridging the Gap -- Improving the Future

While projects, meetings, and presentations unquestionably take a significant time commitment, their importance cannot be underestimated. As the director of a patient advocacy organization, in addition to providing patient support and educational resources, it’s also critically important that we work to help dermatologists, pharmaceutical companies, researchers, health insurers, and all other stakeholders better understand the thoughts and needs of vitiligo patients. Only by closing this gap will we ever achieve a better quality of life for those affected by this disease.

Sincerely,

Jackie Gardner
Executive Director

VSI is proud to announce that we have been awarded the
GuideStar Gold Seal of Transparency for 2021!

With a database of more than 1.8 million IRS-recognized organizations,
GuideStar is the most complete source of information about U.S. charities.
Search Vitiligo on Guidestar.

The article that follows provides an inside perspective on the critical role that VSI is
striving to fulfill, to improve the future for those whose lives are affected by vitiligo.

I waited for nearly 6 months to be seen by a dermatologist while my vitiligo spread like wildfire consuming my body. I became increasingly self-conscious of my appearance. Even if it meant being hot and uncomfortable, I began wearing heavy makeup, clothes, and shoes that would cover all of the visible vitiligo.

I'd always been very active, volunteering in my children’s schools, activities, and community groups, but I slowly began dropping out. My self-esteem plunged until I was no longer even comfortable making eye contact in public.

Counter Attack

In my attempt to fight back, I started researching to learn all that I could about this disease that was ravaging my life. I was fortunate to find an upcoming conference with world-renowned vitiligo speakers. I registered, and my husband and I drove the 8 hours to attend.

What an eye-opening experience that turned out to be. It was like being in an alternate universe where everyone knew what vitiligo was. We learned about treatments that were working and saw the before and after pictures. By the end of the weekend I truly felt like maybe I could fight this!

Dare to Hope?

Time passed and the day of my appointment finally arrived. My dermatologist estimated my pigment loss to be greater than 35% of my body. She prescribed a topical ointment to be used twice a day, but said it was very expensive - so to only use it on my face and hands, which made me wonder about my chest, neck, back, arms, and legs, that were also rapidly losing pigment.

She told me to stay completely out of the sun, wear sunscreen at all times, and to wear long sleeves, long pants, and a large brimmed hat, anytime I left the house. I asked her about the narrowband UVB (NB-UVB) phototherapy that we’d heard so much about at the conference. She said to give the topical a chance and we could discuss phototherapy later.

From hope to reality

My thoughts were somewhat jumbled as I left the office. The experts at the conference discussed the difficulty of successfully treating individual areas of pigment loss with a topical ointment, when the body was still aggressively losing pigment in other areas. In these circumstances they recommended some type of systemic treatment to stabilize the immune system.

One of their suggestions was full body phototherapy, such as NB-UVB. They also reported that combining light with a topical was superior to either treatment used alone, and they stressed that the earlier the treatment begins, the more successful the outcome.

Acknowledging the difficulty some patients have accessing NB-UVB, they mentioned that if/when it was unavailable, during the summer months sunlight could be used.

I was definitely torn between following the guidance from my personal doctor of having zero unprotected sun exposure, or that of the experts I’d learned so much from at the conference. But, it was summer. Sunlight was available. My next appointment was several months away in late fall.

In the end, knowing the experts had many years of experience, had authored multiple vitiligo research articles, and treated hundreds (if not thousands) of vitiligo patients, I made the decision to begin applying the topical to every speck of pigment loss I could see, and to carefully begin using sunlight a few minutes each day.

Treatment Success!

Within a couple of months, the combination of the topical and sunshine began producing freckles of new pigment. Lots of them! With each new freckle I began feeling a bit more in control of my life. But I also began to worry about losing my light source when summer was over.

I anxiously awaited my next office visit so I could show the doctor all my progress and to resume our promised discussion of NB-UVB.

The days and weeks ticked by, and finally my appointment day arrived! I told my doctor about laying in the sun and showed her all of the new pigment I'd gained!

She was IRATE that I had been in the sun.

To this day I can remember seeing a purple vein bulging across her pale forehead. I felt like I had been kicked in the stomach! How could she be so angry? I had been treating religiously - and had regained so much pigment. How could that be so wrong?

Could she possibly have mitigated her disdain of the sun by acknowledging my success -- AND THEN reminded me of sun precautions? At this point my thoughts were so scrambled that I felt like I couldn’t breathe. But she’d told me we could talk about light later. I'd been counting the days until this discussion.

Not knowing what else TO do – I decided to go ahead and ask,
since I'd had so much success with sunlight - would she consider prescribing NB-UVB?

“Absolutely NOT!!!!!!” she replied!

“The risk of skin cancer is too high for vitiligo patients,” she said. I was so confused. At my previous appointment she’d said we could discuss phototherapy. I’d never heard anybody mention an increased risk of skin cancer with vitiligo?

At this point, I was visibly upset. And as if all that wasn’t enough, she then told me I had become too emotionally involved – and that I should try not to think about it so much. She recommended that I STOP looking at the vitiligo on a regular basis … and then she left the room.

How was I supposed to apply a topical twice a day - without looking?

I was devastated....

Nothing leaves a patient feeling more abandoned or hopeless than knowing there are treatments available but unattainable. ...while their condition worsens.

Where do you go when you have a progressive, incurable, life-altering skin disease –
and you know there are treatments that work - but your doctor refuses to prescribe them?

I just wanted a doctor who cared....

It’s difficult to not feel resentment when the doctor you’ve trusted to treat you professionally and with respect and understanding, instead belittles and embarrasses you for daring to display your emotions after refusing to prescribe the treatment you most need, when you most need it.

I’m pretty sure it was that doctor, that experience, that day … that burned an indelible desire in my heart not only to right the wrongs that had bruised my soul, but also planted the seeds to be a part of the change that would help others.

We All Deserve More

If a patient has to wait 6 months to be seen by a “specialist,” is it unfair to expect the “specialist” to have some level of knowledge of current therapies, or, to have taken 5 minutes to consult current research on the topic of the patient’s problem?

It is the inability to obtain treatments that drives patients underground.
With, or without, the support of their physician,
patients desperate to obtain a treatment will obtain a treatment.

According to Carmen Catizone, MS, RPh, DPh, executive director of the National Association of Boards of Pharmacy (NABP), “buying drugs on illegal websites represents a “significant patient safety issue.” At best, this approach leaves the patient at the mercy of internet scams, and at worst it leaves them vulnerable to counterfeit medications.

Your Voice – Your Story
Each and Every One Matters

Each time the phone rings, or I receive an email from someone who’s been told that vitiligo isn’t dangerous, it won’t hurt them, there are no treatments, or the treatments don’t work, I feel the same sting I felt all those years ago....

and remember why I’m still here.

You have trusted VSI enough to come to us for help, support, and information.
You have shared your most personal and heartfelt thoughts, emotions, and struggles.

While the camaraderie of sharing your day-to-day struggles is unquestionably a very important part of healing, camaraderie alone cannot bring or create the sustainable change required to improve the future.

Like passing a baton in a relay race,
once you’ve passed your burdens on to VSI, it’s then our job to continue the mission.

Building Bridges – Closing the Gap

For nearly 20 years, VSI has worked to bridge the gap between the patient experience
and the misunderstandings of the medical, scientific, and professional industries.

Seizing every opportunity to have your voices heard and understood:

We have attended international meetings, educational forums and sessions; made presentations to physicians, researchers, and industry representatives; and served on multi-cultural steering committees working to address the physical, emotional/psychological, and financial impact of vitiligo on your health and overall quality of life.

Someone once told me:
“Vitiligo is like being in prison for a crime I didn’t commit.”

Being diagnosed with a life-altering skin disease is burden enough. No one deserves to receive incorrect information, not being prescribed a current treatment, being forced to seek unsafe alternatives, or being told that their emotions are inappropriate.

Are Better Treatments Important to You?

On several occasions I’ve spoken with pharmaceutical representatives who’ve been told by patient groups that many vitiligo patients have learned to accept and embrace their vitiligo, and that treatments are not a priority.

The Concern:

If vitiligo patients are satisfied with their lives and don’t want treatments, then why should scientists spend years in research labs, and pharmaceutical companies risk the investment of millions upon millions of dollars working to bring better treatments to the market?

The Reality:

Sure, there are plenty of people who’ve learned to accept all that vitiligo has taken from them, and no longer focus on treatments. However, I can assure you that they are in the vast minority.

When first diagnosed, all vitiligo patients desperately want treatments. Barriers to treatment for vitiligo patients are enormous, causing many to give up hope and accept life without treatment.

Settling for what you deserve, but cannot have,
should not have to be an option.

If we want better treatments, then it’s critically important that the scientists, researchers, and pharmaceutical industries realize that while there are indeed patients who have given up on the system and/or treatments, if better, affordable options were available, that worked to both regain and retain pigment and required less time and interruption of life, nearly all vitiligo patients would clamor for treatments.

How will they know?

The knowledge we’ve gained from the stories and perspectives of our members from around the world has led VSI to become a “go-to” clearinghouse for many industry representatives seeking a knowledgeable, reliable, and demographically diverse, first-hand source of thoughts, needs, and quality-of-life burdens of all vitiligo patients.

VSI Doesn’t Only Represent a Few Select Patients,
From One Group, One City, One State, Or One Country.

VSI is Working to Bridge the Gap

Sometimes I just have to look back …
to keep moving forward … and remind myself why I’m still here.

The Bottom Line Is:
VSI is an important piece of the hope for a brighter future for us all.

But it’s tough work, and requires manpower and funding.

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Mattel, creator of the Barbie doll, said their Barbie Fashionistas line “showcases a multi-dimensional view of beauty,” and incorporates more diversity by offering dolls with different skin shades, eye colors, hairstyles and clothing.

The expanded collection includes dolls with pigment loss, no hair, prosthetic limbs, (including one with a wheelchair), as well as a doll with the hijab head covering worn by some Muslim women. Mattel said that a prototype of the Barbie with vitiligo posted on its Instagram page last year was its most ‘liked’ post ever, showing the need for these types of dolls with which a variety of children can identify. Dolls like the Fashionistas line will hopefully remove some of the stigma that some with vitiligo and other conditions or disabilities feel, and be more inclusive of various races and body types not found in its original Barbie line.

Check out Vitiligo Barbie!

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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?

Help! I'm Depigmented,
But I Started Getting New Brown Spots.

Q. I have had vitiligo for over 40 years and have been completely depigmented for many years. This summer, I recently spent a weekend at the lake and accidently burned my skin pretty badly. After that, I began seeing new spots of pigment coming back on my arms. I have been really upset because it took me a long time to finally become one color. Am I going to regain all my pigment again? What should I do?

UV radiation from any source, promotes production of melanocytes (pigment-making cells). This is why, as seen in the photo below, phototherapy, such as narrow-band UVB used in controlled dosages, is one of the mainstays in vitiligo repigmentation therapies.

The pigment spots resulting from sun exposure on the skin of those who are depigmented are often referred to as “brownies.” If you do not want to regain these spots, then protect your skin from the sun!

Chances are that if you’ve only regained a couple of spots of new pigment, and you immediately begin following appropriate guidelines to protect your skin from UV radiation, the new spots may fade away in a few months. If you continue to regain pigment, then you may need to resume a brief course of monobenzone therapy to halt the progression. Either way, it would be a good idea to make an appointment with your dermatologist.

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Medical News Updates

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

WARNING: Sunscreen Danger!

Valisure, a pharmacy focused on patient advocacy and dedicated to bringing transparency and increased quality to the pharmaceutical industry, recently released a report on the testing of 78 different sunscreens and after-sun care products that were found to contain benzene, which is known to cause cancer in humans. They tested 294 unique batches of products from 69 different companies, which included gels, sprays, and lotions in both mineral and chemical formulations.

The National Institute for Occupational Safety and Health (NIOSH) notes that methods of exposure to this carcinogen can include “inhalation, skin absorption, ingestion, and skin and/or eye contact.”

“There is not a safe level of benzene that can exist in sunscreen products,” said Christopher Bunick, MD, PhD, associate professor of dermatology at Yale University and member of Dermatology Times® editorial advisory board. “Even benzene at 0.1 ppm in a sunscreen could expose people to excessively high nanogram amounts of benzene.”

Benzene has been associated with blood cancers such as leukemia. FDA research has shown that the chemicals in sunscreen products are absorbed by the skin and found in the blood at high levels following application which makes these findings "particularly concerning,” according to Valisure.

Valisure’s testing found 27% of the samples contained some level of benzene, with some batches having up to 3 times the current FDA concentration limit of 2 parts per million (ppm). However, that concentration limit is conditionally restricted by the FDA, applying only to special circumstances, which do not include sunscreen manufacturing.

The sunscreens containing the highest benzene concentrations (up to 6ppm) were found in four sprays from the same brand. It is important to note, however, that the active ingredients in those products are also found in products that were not contaminated. So there really is no way to know by looking at a label if a product is safe to use.

ConsumerLab suggested possible sources of the benzene could “relate to how a specific ingredient was manufactured, where it was sourced, or how it moved through the supply chain.”

Valisure is asking the FDA to encourage recall of the contaminated products; better define limits for benzene contamination in drugs and cosmetics; and not only to create concentration limits, but also to set a daily exposure limit for standard drug products, including sunscreen.

Ruxolitinib: Phase 3 Update!

In our Spring Newsletter, we reported the positive results from Phase 2 of drug manufacturer Incyte’s vitiligo clinical trials for the JAK inhibitor, ruxolitinib cream.

Research has shown that when the JAK signaling pathway becomes over-active, it drives the inflammation associated with triggering both the onset and subsequent progression of vitiligo. The goal of the ruxolitinib cream (a topical, nonsteroidal, anti-inflammatory JAK inhibitor) is to reduce or block this process.

Incyte recently announced the results from their two Phase 3 clinical trials, each of which included 300 patients over 12 years of age with non-segmental vitiligo.

As with the previous trials, Phase 3 demonstrated “significant improvements in facial and total body repigmentation,” with no new safety-related problems being observed.

Based on these positive results, Incyte plans to move ahead with submitting marketing applications to the U.S. Food and Drug Administration (FDA) and the European Medicines Agency (EMA) in the second half of 2021.

This truly is exciting news! If approved, ruxolitinib cream will be the first and only FDA approved medical treatment prescribed to regain pigment in vitiligo.”

VSI will continue to provide updates on this promising information.
For additional information, see VSI's Spring Newsletter.

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Research & Clinical Trials

Vitiligo Treatment Clinical Trial
Irvine, California

RECELL Clinical Trial
Irvine, California

Continued Online Depigmentation Survey

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