biologics – Preventable: Protecting Our Largest Organ

IID Conference 2018, PART 1

This past week, Kelly Barta and I attended the International Investigative Dermatology Conference in Orlando, Florida. Kelly is the new President of ITSAN, the International Topical Steroid Addiction Network. We had met on two other separate occasions, so I trusted the week would be filled with both fun and advocacy.

On Wednesday night, we entered the Rosen Creek Hotel dressed in our best and hoping to mingle. To say the conference was packed is an understatement. Doctors and researchers from around the world were stuffed into the open buffet and bartended area, chatting and greeting old friends. We figured out there must be around 3,000 people present. Our mingling strategy was a no-go since there was not much opportunity to interject into already matured conversations between colleagues. We however caught up amongst ourselves and shared our thoughts of what we expected, what he hoped would come to pass, and how to best utilize our time at the conference. Kelly had already set up a fabulous booth in the poster presentation room and all we had to do now was make an impression.

Thursday was our first long day of the ‘marathon’. With Kelly being such a warm and intelligent conversationalist, I would leave her to man the booth while I attended some of the smaller poster sessions and mini symposiums. I was interested to see what else was happening in the field of dermatology surrounding the skin (that perhaps could intersect with our advocacy). There were LITERALLY over 1500 posters being showcased, all with different research topics. Quite overwhelming for an onlooker who didn’t understand every facet of research or jargon being used. The only place I felt confident was at the Atopic Dermatitis presentations.

That night, before the IID shuttled us off to The Wizarding World of Harry Potter, we had a large lecture on Pathoimmunology and Management of Atopic Dermatitis. There were 4 different speakers: Emma Guuttman-Yassky, Jonathan Silverberg, Eric Simpson, and Amy Paller. They are some bigger names in the AD community. Many topics were discussed during this blocked period, most of which were echoed and further looked at in other sessions. One is the two main categorized causes of AD: The INSIDE-OUT, and the OUTSIDE-IN. The former comes from a Type 2 response in the body (like allegories) and all the different IL pathways. IL stands for interleukin, which are certain glycoproteins responsible for immune response. There are many ILs that seem to play a role in AD and other autoimmune issues, such as psoriasis. The latter cause stems from our epithelial barrier and innate immunity– things like filaggrin, which are what help seal out allergens and irritants from entering our bodies.

One huge element I took away from the lecture was “AD (atopic dermatitis) IS REVERSIBLE AND IMMUNE DRIVEN”. That word, reversible, is a word filled with hope. So many patients have heard doctors tell them that they will be on steroids for the rest of their life because eczema is incurable. But, if we can find a way to reverse the damage, it will be a day of joy. I truly hope in the next decade we find out how little we will ever need to prescribe steroids since we will have found safer and more effective drugs that target the causes of our symptoms, not just the symptoms themselves.

At one point, when they were discussing statistics (adults with A.D.: 7%/Children: 15-20%), they were not sure why A.D. was becoming more persistent into adulthood. All I could think in my head was: steroids. If patients are being treated constantly with steroids, some are sadly going to be in the steroid-induced eczema column. They also gave statistics on our lack of sleep and teetering concentration throughout our work days. 90% of sufferers said they experience sleep loss 1 night a week. 50% said they experience sleep loss 5 nights a week! What a large number!

The hottest topic however was new treatments being studied or already in trial for helping relieve patients with atopic dermatitis. The one we already have available in the United States is Dupixent (Dupilumab), which is an injectable treatment that targets IL 4 and IL 13, two culprits in AD inflammation. They are seeing it help around 50% of patients (noticeable to massive improvement), and studies that even show improvement in filaggrin production.

The drugs that are in phase trials going on are the following
(name of drug: the IL it targets):
Tralokinumab: IL 13
Lebrikinumab: IL 13
Mepolizumab: IL 5
Nemolizumab: IL 31RA receptor
ANBO2O: IL 33
Tezepelumab: TSLP
GBR830: OX40.

So many!! And these are just the monoclonals (or also known as biologics). You may be wondering why we have so many IL targets that differ, and it’s because not only can many play a role, but different ethnicities have issues with different ILs. One drug may work wonders for one person, but it may not help another very much. Doctors and researchers are doing their best to tackle this puzzle.

Something I did not enjoy hearing about with these trials however is that many allowed steroid use. So, when you see the number 68% in the placebo group, it’s not because it was just a psychological improvement, but because they were using steroids when needed. How are we supposed to know the efficacy of a drug by itself if steroids are also being used in tandem? Not all trials but too many to count are allowing this. Nevertheless, it still seems to be helping some individuals who are now off of steroids because of it. That is a plus.

Another stellar branch they are trying to utilize is bacteria. It has become apparent that Staph aureus (Staph au.) plays a part in irritating atopic patients. Many doctors present spoke about the need to keep antibiotic-resistence at bay, so this new study (hopefully going to be conducted within this year) is going to be using good bacteria to try and combat the bad bacteria. Different strains of bacteria are able to fight against Staph au. and a couple in particular will be in the trial (I am not sure exactly the one that will be in the trial, but I believe it will be Staph hominis or Staph epidermidis). Exciting times!

At the end of the lecture, Eric Simpson allowed us to partake in an electric quiz. He gave us a scenario and then asked us (mind you us meaning a room mostly consisting of AD dermatologists or researchers) to answer a few questions surrounding what treatment route we would take for the patient. So, this patient in particular had used plenty of steroids, the scenario even including that he had taken oral rounds of steroids. Now, this patient is coming to see you — Your first step at the new office would be?

a. Repeat course of oral steroids
b.Consider patch testing
c. Start ustekinum
d. Biopsy

The majority of us (including myself) put B — patch testing. However, 16% answered they would do ANOTHER round of orals. Right there, in that room of maybe 100 people, that many jumped straight to the easy go-to that was obviously NOT working. It blew my mind since the % for answer “a” should have been 0%.

Then, he gave us a new scenario (I can’t remember all the criteria), but his first question was “You think the patient has AD. Your first line treatment for this condition would be”: and 58% stated topical steroids. It is still very much the go to, first line treatment. I was sad to see this, but this is what is taught. And it doesn’t make me sad because I think steroids are evil — that’s not my thought process. It makes me sad because when they are given steroids, it is most likely going to be for a much longer prescription than advised by the FDA guidelines (which is around 2-4 weeks of use). However, I was pleasantly surprised/perturbed by the next question: “He fails aggressive topical therapy, what is your next form of treatment?” Great, right! He is saying if the patient fails the first prescription, you move onto the second and not keep the patient on steroids forever! But, vaguely, what does “aggressive” therapy imply? Quick but super potent dose? Excessive use of steroids at different potencies? That part did catch me off guard. And his answer for the question was Phototherapy. I wish that would be considered as first line treatment and not steroids — but it can be impossible for a patient to do since it requires coming in 2-3 times a week for a short burst of UV treatment. Inconvenience, cost, and slower progression in skin repair is NOT what we want (or can sometimes even have as an option). We want the RIGHT NOW, which is steroids. They are quite the temptation. But that was the ending of the conference day, educational wise.

During the day on Thursday, while I was out scouring the posters and soaking up as much lecture information as possible, Kelly did a stellar job networking! I am in awe of her skills. She has a knack for starting conversation and speaking fluently with any stranger. She was able to talk with a few different doctors who were aware that steroids were not the chronic bandaid patients should be dawning, and thankfully she had a wonderful talk with two women from the Psoriasis group! Plus, a plethora of individuals came by the table checking out ITSAN case studies printed out in a binder, ITSAN brochures, and even USB drives with the case studies loaded on them. I’d say it was a pretty successful Thursday! Plus… Universal Studios!

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(stay tuned for Friday and Saturday)

Also, I am not on ITSAN’s board and do not speak on their behalf. We are both advocating for the same cause and I am honored to be working beside them in raising awareness.

NYC Mount Sinai Integrative Medicine Conference

New York City is one of my favorite places, so when I was informed by Henry Erlich that this conference was being held in the Big Apple, there was no hesitation in buying a plane ticket.

The conference was this past weekend, May 13th-14th. I was only able to attend the primary day. However there was plenty of information to be absorbed. My main reason for going was to hear the prestigious and awe-inspiring Dr. Xiu-Min Li spill her knowledge on allergic disease, ASHMI, and her take on Red Skin Syndrome. She will be one of the doctors I humbly get to interview for the documentary this summer, and I am stoked! Such an amazing woman whose research I know will change the way we treat eczema in the next decade. I see a Nobel Prize in her future.

Dr. Li has a phenomenal opportunity while working at Mount Sinai, bringing together both Western and Eastern medicine in a clinical setting. No Western doctor will be able to deny her results and her rigorous efforts to show how wonderful Traditional Chinese Medicine can be (and is!) for our growing allergy and eczema problems.

Besides Dr. Li, there were a plethora of doctors participating, some even flying all the way from China. We had headphones and a translator present in order to understand everyone speaking.

At the bottom, I will be posting a video of Dr. Li’s talk and all that I was able to film. Sadly, I was told we couldn’t video anything so I wasn’t prepared. It was only very late the night before that I was told I was misinformed. I did my best filming with my heavy camera and old phone while trying to listen. It’s a bit shaky, so I apologize. It had been down pouring that day, which soaked my shoes, so most of the conference I was bare foot, attempting to sit on my feet in hopes of warming them up in that already frigid auditorium room.

But here are a few highlights from the conference:

1st Speaker: Susan Weissman

Her son, Eden, had horrific allergies, asthma, and skin problems. She found Western medicine was not helping their son improve. She is an avid promoter of Dr. Li’s work and is happy to say her son is finally able to enjoy life because of her protocol. She is the author of Feeding Eden, a memoir about raising Eden with all of his serious health problems. I think the most profound thing she mentioned was her question to Western medicine doctors: “How do we treat the entity of allergic disease?” Medicine seems to be extremely narrow-minded instead of looking at the body (or a condition) as a whole.

2nd Speaker: Dr. Xiu-Min Li

She gave a brief oration before her longer one at the end of the conference. The merit of her work is astounding and she emphasized how necessary it was to be able to show how TCM brings results that Western doctors can believe in and not have them be able to dispute them as “false” or “not supported.” All of her work has to be proven through science.

4th Speaker: Shi-Ming Jin, MS

*Apologies since I skip over a few speakers* I loved how she spoke about how the integrative world is striving to be more innovative and adaptive to Western world medicine in hopes of showing how TCM is helpful and important in giving patients relief.

8th Speaker: Jing Li, PhD, FDA Botanical Review Team

Basically, there are FDA guidelines/guidance for using botanicals (herbs) in medicine. They are tested in clinical trials just the same as Western medicine, so they are treated equally. It can not be written off. A demonstration of quality control was given, and how they wish to minimize any chemical, biological and pharmacological variations to obtain consistent drug substances.

10th Speaker: Ke Xing Sun

He gave a speech about how using TCM is about keeping harmony in health with our whole body working together as a unit. We are individual people with individual needs, something Western medicine does not always provide. We should be more patient-centered with medicine. He also advocated health in daily life, reiterating how prevention is key.

11th Speaker: Arya Neilson, PhD

*She was a stellar speaker* She deals with acupuncture and the benefits it can give to certain patients, even those with eczema. One of the most interesting things was how this type of treatment post-surgery can help with opiod sparing since we, in the US, take up the vast percentage of opiod use around the globe. Opiod abuse it sky high and having this available is quite a remarkable treatment. Acupuncture is now even included by Western doctors in some therapies! When it comes to allergies and eczema, there was a study done to show how dust mite IgE levels were down regulated after using acupuncture, and how itching was reduced in eczema patients. However, acupuncture is more of a rescue therapy for patients and herbs should come first in eczema treatment. (She is featured on the video)

12th Speaker: Scott Sicherer, MD

He spoke eloquently about his field in allergy/immunology in babies and what could be causing such an exponential climb in allergies these past few decades. No one is for certain, but he feels having exposure to the skin could be a factor. For some reason, there has been found to be peanut dust inside of homes, which is where skin contact could become an issue. If babies have eczema, they are at a higher risk for allergies. He would use oral immunotherapy to try and desensitize the allergy, hoping to eradicate or raise the threshold. Scott touched upon using biologics (omalizumab) for some cases for 20-22 weeks (it’s an anti-IgE), but he says it doesn’t mean it’s going to be any more effective (just perhaps speeds the process).

14th Speaker: Rachel Miller, MD

Rachel continued to speak on allergies and issues in infants and children, focusing a bit on pregnant woman. She showcased how if a pregnant woman is under stress, her child is more likely to have wheezing. She also explained how methylation and DNA does play a role in some of these areas and how Dr. Xui-Min Li’s protocol, ASHMI, has shown good results in pregnant mothers.

16th Speaker: Anna Nowak-Wegryzn, MD

She gave a very in-depth speech about allergies and infant treatment. When she mentioned starting oral tolerance as early as 1 year old, a question popped into my mind. If we can detect and start to treat allergies at that age, why is it that Western doctors are so quick to lather steroids on a baby, but claim they can not test for allergies until about 3 years old? That’s something that I feel should be addressed. When it comes to peanut allergies, she said she personally thinks using boiled peanuts instead of baked are safer to use for desensitization without losing efficacy.

** Funny side note** Dr. Xiu-Min Li came up and asked a question during Q&A. She asked it in Chinese, and the speaker answered back in Chinese. Everyone asked what was said so Dr. Li offered to translate. She started to do the translation, but didn’t realize she was still speaking in Chinese, so someone stopped her. She didn’t realize she wasn’t speaking English. We all had a laugh.

18th Speaker: Julie Wang, MD

She spoke about a drug trial (See pics below)

20th Speaker: Dr. Kamal Srivastava, PhD

One of his best and to the point notes was that IgE is central to the pathology of allergic disease. Another subject he touched on was FAHF-2, which is another herbal formula much like Dr. Li’s ASHMI. Berberine, an herb, is the most potent at reducing IgE levels, and can even help lower glucose. However, it is very badly absorbed taken orally, so they are trying to make it more effective (perhaps, adding to a molecule).

22nd Speaker: Dr. Ying Song, MD

23rd Speaker: Anne Maitland, MD, PhD

She studies Mast Cell Activation Disorders. Anne used the Great Wall of China as an analogy, how it’s not always effective for keeping the bad out. Mast cells can release different things, like histamine or tryptase, and just like a police call, you want to send the correct team out to help for the correct situation. She also touches on how when we figured out how to decrease certain bacterial-based diseases (like Measles), hypersensitivity disorders increased (like allergies). Naps, apparently, are something we need more of to help with stress (which I totally agree!).

24th Speaker: Julia Wisniewski, MD

She spoke about our skin barrier and how we shouldn’t use alkaline soap on baby skin. The best thing she mentioned however was that at the latest AAD meeting, she saw a slide that said steroids do, in fact, have the ability to cause allergic reactions in patients. Near the end, she spoke about Vit D and how it’s definitely important for our bodies.

The last two speakers were Tiffany Camp Watson, the mother who gave her testament about using Dr. Li’s protocol, and then Dr. Xiu-Min Li herself! They are both on the YouTube video speaking. Most of the video is of Dr. Li speaking. After 6:30 mins, it is all Dr. Li and her presentation.

I hope this was informative and I can’t wait to have all my equipment in to shoot these upcoming interviews! 2.5 weeks to go!