It was evening, I was doing stuff on my computer while my tv was on. For a minute the news showed this model who had a skin disease, I looked at the tv for a second and thought “poor girl”, then looked back to the computer screen, carried on what I was doing and forgot about it. Several months later I happened to go to a dermatologist while I was visiting Italy, my home country. In italy you don’t really need a referral: you can simply pay and go private immediately so people go to see a specialist for all sort of minor issues as well. I went for a couple of minor reasons and I figured I would also show a small discolored patch I had noticed several months back. She looked at it and immediately said “that’s vitiligo” (well, in italian it’s vitiligine). “Cool” I thought, at least now I know what it is. Now sitting in front of her across her desk I listen to the explanation about what vitiligo is. It really sounded like nothing, I simply lost some melanin in that area. “Well that’s fine then, nothing bad” I thought. That was until she told me: “did you see that canadian model who was all over the news a few months ago?”… “What? do I have THAT thing??” I thought, not just that, but she told me it could potentially spread. That’s when I started to worry. Now I know that model I saw on tv that evening of many months before was Winnie Harlow, if you are reading this you probably know she is a famous model who has vitiligo. During the entire conversation with this dermatologist there was one question in my mind I was reluctant to ask her, because at this point I had figured out the answer already: had there been an answer she would have mentioned it, but… until I openly asked I could still hope, until I finally asked the million dollars question: “is there a cure?” , just to hear the inevitable answer I already knew by now… “no”… That’s how it all started for me. After this, one of the questions I kept asking myself was… how is it that in the 21st century there is still no cure for such a skin disease? It seems strange that we are planning to go to Mars, we found cures to so many diseases, we are advancing very fast with progress involving self driving cars, stem cells, artificial intelligence, robotics, virtual reality… but there is no cure for a few white patches forming on the skin? How is it possible? Well first of all it’s harder than it sounds: it turns out this is more complex than a simple skin issue: only recently we discovered that this is an autoimmune disease, and there is no cure for any known autoimmune disease yet. The immune system is extremely complex. Yet as I mentioned we are very advanced, it’s not that we don’t have the talent, we have amazing researchers and we have great knowledge, we simply do not have the money to use all this great potential we have. The money goes mostly into research to find a cure for other diseases that by pharmaceutical companies are considered worse than vitiligo… I work in visual effects for movies so I can tell you that if you watch a movie which had very bad visual effects or which is filmed in a bad quality, for example an amatour movie or a low budget one, it does not mean that the visual effects artists, cameramen, lighters, director of photography etc… are not qualified in doing their jobs, they could very well be the best in the world but most of the time if you watch a bad quality movie it simply means the budget is low , it doesn’t mean that the people who did it are bad at their job. The same applies with the vitiligo research: we have the talents, we have the potential to gain a great deal of knowledge about it in a short time and we have a the skills to find the ultimate cure… but we do not have enough money to speed up the process. So the reason why in the 21st century there is still not cure for vitiligo is not because we are not yet advanced enough but because pharmaceutical companies are not investing enough money in this disease. They don’t see this as a painful or life threatening disease and they see it as purely cosmetic. However, it can be psychologically painful and the fact that it’s purely cosmetic is not actually true: there is a percentage of people which experience issues in the eyes and some degree of hearing loss, simply because we have pigments on the retinas and in our ears as well, and those can be attacked by the immune system in vitiligo patients. The other issue is that vitiligo patients do not bother pharmaceutical companies enough. Lupus is 100 times more rare than vitiligo and yet they have 100 times more funds for research. This is mostly because lupus patients really push pharmaceutical companies to find a cure and they constantly bother them. And of course every single patient who suffer from lupus would want to be cured, in vitiligo on the other hand, not every patient is looking for a cure: some vitiligo patients are actually damaging this by promoting vitiligo as something beautiful. I absolutely admire those people who claim to love their vitiligo but this is bad for the research: for example, in an interview, Dr Harris said that someone from a pharmaceutical company once asked him why they should invest in a disease that some people not only say they fully accept but they even love? And this is indeed a good point: I have witnessed it myself by reading some posts in social media groups: some people say they love their vitiligo and in some cases I have read myself comments stating if there was a cure they would not want it. I also remember reading a post from a woman claiming she was proud of her vitiligo, and countless other posts claiming people loved their vitiligo and their spots. Of course no lupus patient (not even a single one) would claim they love their lupus or they are proud of it. After all, why would you be proud of having lupus? Why would you love it? Now, if you were an investor from a pharmaceutical company, would you invest in a disease that every single patient would hate and would desperately want to get rid of, or would you invest in a disease which some people (even though a minority) claim they even love or they are proud of? We need to educate pharmaceutical companies that vitiligo can be psychologically devastating for some and it’s not always only a cosmetic issue.
My vitiligo is still very mild and it doesn’t bother me but I live with the anxiety of it potentially spreading and if I knew there was a cure I would pay big money for it as this would give me my peace of mind back.
Having said all this, even if there is no cure research is now progressing: there was more progress in the vitiligo research in the last 10 years than there was in the last 2000. Dr Harris said with current resources we will have a cure in 20 to 30 years, however if they get more funds this could be reduced to 5 to 10 years. In the meantime, in the past few years they already developed a drug which can reverse vitiligo: it’s an antibody blockade of the IL-15 protein, this is proving extremely effective in reversing vitiligo and this drug, according to Dr Harris, should be on the market in 3 to 5 years from now if the clinical trials continue to go well. There are tens of other clinical trials going on in vitiligo at the moment, we have written about apremilast and topical jak inhibitors and those are just two examples of countless other ones going on. What is really making a difference now is that we now know that cytokine CXCL10 plays an important role in vitiligo and therefore its inhibition can potentially treat vitiligo very effectively, this was maybe the most important breakthrough in the vitiligo research recently. The point though is that with more funding we could significantly speed up all this. What I find interesting is that If every single patient donated a minor amount, even just 50 or 100 dollars, we could very well have a cure in a few years. The problem is there is no way every single patient will do that: most patients would be willing to spend a lot of money for their own treatments (uvb light therapy, excimer laser etc…) which may or may not work, but they probably would not spend the same amount or even half of it as a donation to the vitiligo research. If all the money spent by every patient for their own individual treatments went into research, I am positive we would already have had a cure for a long time! This is a real paradox, but it’s human nature: people would rather pay for something which could maybe have a chance of helping themselves other than donating for the greater good, even if donating would be a much more effective choice if done by everyone. Let’s say as an imaginary experiment that someone gave $100 to each vitiligo patient and each patient would have a choice: using this money to buy a cream which can treat his/her vitiligo, or (as a second choice) donating them to research. Most people would probably use them to buy the cream which can treat their own vitiligo, even if the cream worked, then the vitiligo could potentially come back. On the other hand, if every patient donated the 100 dollars to research then we would have a definite cure in a much shorter time. In order to significantly speed up the development of a cure it’s very important that each and every one of us donated and at the same time tried to advocate for a cure. If you wish to donate, we have a page which will redirect you to the Umass vitiligo research lab donation page, which is the best way to donate to the vitiligo research, click here to visit the page and find out more about it.
2018 has been an exciting year in the vitiligo community and 2019 will be even more exciting! In 2019 we will know the result of the clinical trials of apremilast for the treatment of vitiligo (you can read our article about this here), an (perhaps even more exciting), phase 2 clinical trials on the antibody blockade of IL-15 will officially begin in summer. Super exciting times in the world of vitiligo! And with these positive vibes in the air, I wish you all a merry christmas and a happy new year!