Children's Melanoma Prevention Foundation Founder, Maryellen Maguire-Eisen ๐Ÿ˜Ž๐ŸŒž


I learned a ton of information from Maryellen Maguire-Eisen, the founder of the Children's Melanoma Prevention Foundation last week!! I took extensive notes on the interview recording and I've picked out the highlights for you. Did you know that...

One person dies every 40-45 minutes in the US from skin cancer and it's preventable and easily recognizable. We need to educate people because for some reason we're not making this a priority.

The Children's Melanoma Prevention Foundation has reached 1 million children and 100,000 children yearly. They are the only US national children's melanoma prevention organization. In their program, to keep things fun with kids, they use various tools depending on the age of the students - for elementary school kids they use felt people so the kids can show the adults how to protect someone from the sun. For older kids they have a UV reflecting camera which shows sun damage on a person's skin and shows a person how well they have covered their skin with sunscreen. They also use a dermatoscope for kids to learn how to notice normal mole characteristics and have them do case evaluations.

There is a video called How the Sun Sees You which uses similar technology as them and reveals typical damage to the skin from the sun.

Their program uses the SunAWARE acronym to make things simple:

Avoid unprotected exposure

Wear sun protection clothing - hat, sunglasses, wide brimmed hat, long sleeves

Adequate amounts of sunscreen - 1 ounce applied every two hours or every 40 or 80 minutes, depending on the type of sunscreen and whether a person is perspiring (at 52:42 in the video she talks about this)

Routinely examine your skin for changes and report changes to your health care provider

Educate others - it's so important to teach others. For example, the most important thing to know about UV rays is that they peak June 21 but you can get apps that tell you the UV level at any place or time - it's easier to get a sunburn in May (even at 50 degrees) than in August! Melanoma is more common in the northern states of the US than in the south. Kids in the south do get some cumulative sun exposure but we get more sunburns in the north. In skiing you get a LOT of UV rays reflected off of snow; also higher altitude (kids/families go during February, April vacations).

What is the risk of melanoma for someone who doesn't burn? 5 skin types have been classified.

Type 1 - very light complexion, often red headed, always burn, never tan.

Type 2 - usually burn but could tan...

Type 5 - deeply pigmented.

What is your risk if you have a family history of skin cancer? If you have a parent or first degree relative you have an 800% increased risk of getting melanoma compared to someone who doesn't have that history. It's not just the skin type that you inherit but the behaviors. She and her family used to go to the beach every nice day in the summer as her mom was a teacher. They got a lot of exposure as kids. It's a combination of coloring and exposure behaviors. If you have had one melanoma you have a 6% chance of getting another one. If you've had a basal or squamous cell cancer you have a 40% chance of getting another. That's why if you have had skin cancer you have to see a dermatologist regularly for screening.

**Bob Marley died of malignant melanoma!! People who are type 5, deeply complected tend to get on palms, soles and nail beds. He had it on the nail bed of his big toe. So when people with darker skin do develop a lesion they often don't get it treated and don't do as well with the disease.

Which type of sunscreen is the safest?

Well, the FDA came out last year and said that they didn't have enough research to support that the chemical sunscreens could be graded GRAS - Generally Recognized As Safe and effective. In February 2019 they requested that the sunscreen manufacturers do more clinical trials to show safety. The FDA then did 2 studies themselves. In May 2019 they used 4 chemicals and had 23 subjects. They used the chemicals oxybenzone, avobenzone, ecamsule, octocrylene and found that all 4 crossed the skin into the plasma/blood and said that we needed more information. The 2nd study in JAMA (January 2020) used 6 ingredients and found the same thing - all six were in the blood and we need more information. The sunscreen companies were supposed to come back this fall with more information... the Sunscreen Innovation Act in 2014 that was what the FDA was responding to has been rolled into the CARES Act. **HOWEVER, on March 27, 2020 the Federal Government reinstated the GRAS determination for all the chemical sunscreens.

The best sunscreen is the sunscreen you like to use. Try different products.

Maryellen believes sun protective clothing is the best option for sun protection (and I agree). Companies like Coolibar, Snapperrock and Cabana really test their products and wash them thousands of times to make sure they maintain their ability to filter out the UV rays. You can buy them on sale in the fall/winter if concerned about the price. They have one piece suits for infants for babies older than 6 months old (babies 6 months or younger shouldn't go in the sun) and *kids who are raised wearing the sun protective shirts expect to always wear them, they don't even want to go to an indoor pool and not wear them. Clothing with UPF of 50+ blocks out 99% of harmful UV rays.

Tanning is BAD NEWS!!! - Maryellen interviewed a woman who talked about her tanning addiction to tanning and her melanoma diagnosis. It's incredibly powerful. The video starts with her when she was first diagnosed and then at the later stage of metastatic disease (she passed away at 26 years old after a recurrence).

To get adequate amounts you only need 10 minutes 3 times per week of midday sun. Dr. Michael Holick, an endocrinologist at Boston University is the world's foremost expert in vitamin D and UV (in Maryellen's opinion) and he talks about the bioavailability of vitamin D versus supplementation.

Should we be afraid of the sun? No! The sun is a wonderful thing that keeps us happy and healthy and we can use it well, we just have to use it carefully and be prudent about it. Never say it's bad and no [you can't be exposed to sunlight], just say "Think about it." She does say that about indoor tanning though. Most of the UV rays in the tanning beds are so high that young kids were getting skin cancer ten times faster than getting their sun naturally. It damages tumor suppressor genes in our skin; we have things built in for protection which get turned off if we do certain things [like burn].

How people can be praying for Maryellen and her organization? (Because I know some of you are praying people! ๐Ÿ˜‰) Answer: It's a transition time for her organization because they can no longer go into the schools and community to teach, they can't raise money to do what they do. They're trying to figure out what they're going to do in the future... That they'll be able to continue the mission of their organization which is to prevent skin cancer one child at a time through education and advocacy. To continue to make this disease less prevalent to our country.

If you'd like to reach Maryellen you can email her at info@melanomaprevention.org or maryellen@melanomaprevention.org.

Full Show Notes 7/21/20

Maryellen Maguire-Eisen is the founder of the Children's Melanoma Prevention Foundation and has been working full-time for the foundation pro bono since 2003 out of gratitude for a friend finding melanoma on her mom by chance and potentially saving her life before it got to a later stage. She is the recipient of many academic and service awards. She is an American Cancer Society scholar and an adjunct professor at Boston University. She is also an oncology and melanoma nurse with 40 years of experience.

01:31 How she founded the Children's Melanoma Prevention Foundation?

Was an oncology nurse at Dana Farber Cancer Institute in the 1980s where she was the leukemia research nurse and followed all the adults with leukemia. She wanted to go to grad school, Went to Simmons University to and became a nurse practitioner and focused on skin oncology she did that because her mom had an incidental finding of melanoma. Was a young nurse and at the time of that diagnosis she didn't know what melanoma really was. Focused on skin oncology, graduated as a NP, worked in dermatology for 6-7 years, then decided if she was really going to make a difference in this disease that she really cared about she'd work on prevention. because adults weren't that interested in changing their behaviors, even people who had had skin cancer. She really wanted to focus on children. She wasn't doing a lot in schools to begin with but that was on the side and was lecturing to nurses also.

03:10 Not sure how it happened in 2003 got idea she would start a foundation. Got some books, read, got some friends together. Wrote the application to the IRS and in 2004 she received their determination letter to start the foundation. Had no background in business and didn't know anyone who had done that but got in her head that it was something she wanted to do.

04:03 Met Aurelie, our mutual friend, at Beth Israel on the oncology floor [Aurelie has a family cancer prevention program that she offers to her clients: https://www.bwellnessparenting.com/]

5:37 How they made a kids program fun and informative! The EPA had a curriculum for teachers to use in schools called SunWise - got a list of the schools who used it. Spoke to the nurses but most of them hadn't really utilized it. Thought to make a difference is to use the experts (them) to provide their knowledge rather than asking the teachers to use the curriculum and use it in the schools. Taught 1 million kids, 150 days per year pre-COVID. Reaches 100,000 kids per year. Heavily scheduled January to October.

Felt board people in kindergarten so the kids can teach the adults how to protect someone from the sun.

*Older kids have UV reflectance camera. Used to have a Polaroid camera, allowing the kids to open the picture - to see sun damage primarily. On UV cameras can also see proper sunscreen application. On chemical sunscreens you can see what looks like a black oil slick. Can see if they miss certain areas and to see how sunscreen works and creates a barrier between their skin and the sun.

8:10 HS kids - bring in a dermatoscope to see what their moles look like and see what normal features are. Try to get the kids invested in what they're teaching. Sometimes bring in pictures and do a case presentation and ask them what they think and explore what the features are that they might be concerned about and how they might handle it if they were a health care practitioner.

Try to make it very practical and bring it home.

In some school systems they can teach in the elementary, middle and high school. Especially in the older days kids would write thank you notes and it was terrific to see what the kids took away and remember from it.

How much to use, when to apply, the importance of using sun protective clothing.

*9:50 Also do parent programs and ask the kids to teach their families. Have had really positive results from it. When they had the Polaroid pictures they did a study in a middle school in MA. 3 and 6 months later they looked at sun burn incidence. It was amazing how many kids 6 months out had a Polaroid still. Some kids said the pictures scared them because they had so much skin damage and they tried really hard to protect their skin better that year and were interested to see their results the following year. Really good tool for the kids to gauge how well they were protecting themselves.

11:18 Video - how the sun sees you - Prospect Park in Brooklyn - shows you that the UV video camera they use in the classroom and all the points they try to make. Worked with that videographer to bring camera systems into the schools and community. It's a great hook. She's protected her skin a lot but still has a lot of family involvement in skin cancer. Brother has very significant skin cancers - humbles her to work hard at protecting her own skin.

12:40 10 years ago had to switch to computerized system from Polaroid but it was cumbersome in the classroom but was able to create a system that wasn't too expensive and uses them all the time in 4th-12th grade and in the community. Lets people see their own skin.

13:33 Skin analyzers (black lights) can be used - in health fairs but the camera system is more sophistocated. There was a company that was making a little UV camera as a tool to take to the beach to see if you applied properly but it didn't come to fruition. But the video is great because it's all different ages to give you a general idea.

14:43 Sun AWARE: Friend Mary Barrow - owned Coolibar sun protection clothing company had written a book called Sun Protection for life. Had coined the term SunAWARE and started her own foundation called SunAWARE international foundation and passed her foundation along to them and passed along the trademark. It teaches not only primary prevention (wear sun protection clothing, apply SPF 30 sunscreen& reapply every 2 hours)

Avoid unprotected exposure

Wear sun protection clothing - hat, sunglasses, wide brimmed hat, long sleeves

Adequate amounts of sunscreen

Routinely examine your skin for changes and report changes to your health care provider - if you're starting to turn pink you're getting too much sun. Teach what the signs and symptoms of skin cancers are. Loves this! (Secondary prevention)

Educate others - so important to teach others. Ask - "did you learn something new?" UV rays peak June 21 - so it's easier to get a sunburn in May 50 degrees) than in August! In schools they don't concern themselves in the spring because it's cool. More sunburns in the northern half of th US and melanoma is more common in the north than south. Kids in the south do get some cumulative sun exposure but we get more sunburns in the north. In skiing you get a LOT of UV rays reflected off of snow; also higher altitude (kids/families go during February, April vacations). Some mountains put signs up about the importance of sun protection during skiing.

19:50 Teach the kids how to read a sunscreen label. In 2011 the FDA put regulations out about sunscreen labeling. With water resistance - if resistant, sunscreen either protects you for 40 or 80 minutes. This is why a rash guard is the best option rather than re-applying sunscreen.

They bring hats and funny things in. Cultural differences - other parts of the world take sun protection much more seriously than Americans.

50% of kids in the US and one third of adults in the US get at least one sunburn every year.

*21:23 Bring in products - in China women wear swim masks that cover their whole face so they don't get too much exposure as they tend to hyper-pigment. Just did a program for pharmacists. In China they wear masks all the time so it's easier to accommodate for wearing masks with the pandemic.

Bring in sombreros or hats from Vietnam which are gigantic. In America we wear baseball caps and have 5 million cases of skin cancer every year despite all the wonderful products we have.

*One person dies every 40-45 minutes in the US from skin cancer and it's preventable and easily recognizable. We need to educate people because for some reason we're not making this a priority.

22:46 Tanning bedsโ€ฆ They worked with the stage legislature and got the tanning bed ban in 2016. Once she was in the school realized it was super important. Some kids would be badly burnt because their classmates operated the tanning machine and dial it up and keep them in. Now a person must be 18 to operate a tanning bed and be 18 to go to a tanning salon. Because this many tanning salons have closed in MA and the rest of the country.

24:00 For the 1st time, kids and people in their 20s and 30s melanoma incidence has decreased! CDC released this information last fall - probably a large part of that has been indoor tanning.

24:41 Risk of melanoma for someone who doesn't burn? Classify 5 skin types. Type 1 - very light complexion, often red headed, always burn, never tan. Type 2 - usually burn but could tanโ€ฆ Type 5 - deeply pigmented. They teach that anybody can get skin cancer anywhere on their body but it's true that people with fairer skin tend to get melanoma more frequently than those with darker pigment.

**Bob Marley died of malignant melanoma!! People who are type 5, deeply complected tend to get on palms, soles and nail beds. He had it on the nail bed of his big toe. So when they do develop a lesion they often don't get it treated and don't do as well with the disease. In a classroom can show kids with darker skin that they have changes - also tell them how fortunate they are to have natural protection - but it doesn't mean they have a free pass, they still have to use protection.

26:58 There are 14 sunscreen filters approved by the FDA and used in sunscreens - 12 chemical, 2 mineral (zinc, titanium dioxide). Chemicals include oxybenzone, avobenzone, octinoxate, etc. **The FDA came out last year and said that they didn't have enough research to support that the chemical sunscreens could be graded GRAS - Generally Recognized As Safe and effective. In February 2019 they requested that the sunscreen manufacturers do more clinical trials to show safety. The FDA then did 2 studies themselves. In May 2019 they used 4 chemicals and had 23 subjects. They used the chemicals oxybenzone, avobenzone, ecamsule, octocrylene and found that all 4 crossed the skin into the plasma/blood and said that we needed more information. The 2nd study in JAMA (January 2020) used 6 ingredients and found the same thing - all six were in the blood and we need more information. The sunscreen companies were supposed to come back this fall with more information and she was just lecturing to pharmacists and found that the Sunscreen Innovation Act in 2014 that was what the FDA was responding to has been rolled into the CARES Act. **However, on March 27, 2020 the Federal Government reinstated the GRAS determination for all the chemical sunscreens.

26:58 There are 14 sunscreen filters approved by the FDA and used in sunscreens - 12 chemical, 2 mineral (zinc, titanium dioxide). Chemicals include oxybenzone, avobenzone, octinoxate, etc. **The FDA came out last year and said that they didn't have enough research to support that the chemical sunscreens could be graded GRAS - Generally Recognized As Safe and effective. In February 2019 they requested that the sunscreen manufacturers do more clinical trials to show safety. The FDA then did 2 studies themselves. In May 2019 they used 4 chemicals and had 23 subjects. They used the chemicals oxybenzone, avobenzone, ecamsule, octocrylene and found that all 4 crossed the skin into the plasma/blood and said that we needed more information. The 2nd study in JAMA (January 2020) used 6 ingredients and found the same thing - all six were in the blood and we need more information. The sunscreen companies were supposed to come back this fall with more information and she was just lecturing to pharmacists and found that the Sunscreen Innovation Act in 2014 that was what the FDA was responding to has been rolled into the CARES Act. **However, on March 27, 2020 the Federal Government reinstated the GRAS determination for all the chemical sunscreens.

30:30 Wrote an op-ed about the sunscreen issue - if people are concerned about the chemicals they should use one that only has zinc or titanium dioxide. However, Consumer Reports never rates the mineral sunscreens as the most protective, rather the chemical sunscreens as the most protective. If concerned, don't use the chemicals.

*31:30 The best sunscreen is the sunscreen you like to use. Try different products. Some companies have given out sunscreens. SnapperRock gave them sun protection clothing to give to the communities. Went to a school in NYC and did school event where every kid got a rash guard.

32:45 Plans to expand into other states? Received a grant from a nonprofit in MA to create videos. They did a video of their 3-5 and 6-8 grade programs. Worked with educators. 30 minute presentations which could fit into a classroom time with extra time to give homework, answer questions, etc. With COVID-19, contacted participating schools and assisted them in implementing them in their at-home classrooms. Did a Zoom presentation and did Q&A. Have the ability to expand. Will work in the next couple of months to do a program for K-2 and high school and professional program. Want to have all the videos available for anyone who wants to use it! Re-writing their curriculum according to the 2020 national standards. Previously created according to the Massachusetts frameworks which meets the national standards but they've changed. Will be available by next month. Using this time to pivot and work on the things that they have.

*36:03 Don't Fry Day - the Friday before Memorial Day and the unofficial kickoff of summer. Celebrated the 12th year this year. A day of skin cancer awareness throughout the US. The National Council for Skin Cancer Prevention, of which they're a member, are the ones who oversee it. The National Council has a contest to see who can do the most on Don't Fry Day - they won two years in a row. Also got the Massachusetts State Legislature to recognize the day officially. The news picks it up more.

37:50 Gel's question: UV clothing - can they replace the sunblock lotions?

Answer: Yes. They have a different rating system - UPF - Ultraviolet Protection Factor; 50+ blocks 99% of the UV. Companies like Coolibar, Snapperrock and Cabana really test their products and wash them thousands of times to make sure they maintain their ability to filter out the UV rays. Doesn't think there's anything better than them, they're terrific. You can buy them on sale in the fall/winter if concerned about the price. Have one piece suits for infants for babies older than 6 months old (shouldnโ€™t have babies in the sun 6 months or younger) and *kids who are raised wearing the sun protective shirts expect to always wear them, they don't even want to go to an indoor pool and not wear them. She gives sun protective clothing to new parents as gifts.

39:35 Sweater for running, not sure how effective. The companies have to meet industry standards to put the UPF factor on the label. This clothing is the best, especially for the beach and swimming. Some companies also have hats for kids to swim with that really stay on in the water. The beach is her favorite place - she really wants to go! Brings 2 shirts with her - uses one in the water then takes it off to dry and puts the dry one on. You just have to do it safely. :)

40:40 Gel is the president of the PTO at her kids' high school and is interested in the program, how to get plugged into the program?

Answer: Just contact her and they'll get set up for when the kids are back at school. They have a high school program on their website that is an amazing video also. There is a woman who talked about her tanning addiction and her melanoma diagnosis and the ABCs of melanoma. It's incredibly powerful. Interviewed her in the beginning when she was first diagnosed and then at the later stage of metastatic disease (she passed away in her mid-twenties after a recurrence of melanoma). They also recorded how the kids reacted to her story. High school kids are really conscious about their skin.

43:35 There are free UV apps that will tell you what the UV is a moment in time wherever you are. Some also have timers to put your sunscreen back on and it's a great asset.

44:42 Theresa's questionsโ€ฆ Didn't realize melanoma was such a prevalent killer. Has concerns over the constant application of sunscreen. The need for vitamin D - there is a great vitamin D deficiency, the vast majority of people have low vitamin D. The easiest way to get vitamin D is from supplementation but you can't replace the Vitamin D that we get from sun exposure. Nature therapy and emotional support of being out in the sun is important also. Concerned about the fear factor and interested to know about the children in the south who have gradual exposure - are they generally healthier kids? Constant chemical load from sunscreens that can add up and cause problems if not at a young age, in middle age.

47:00 Re: vitamin D - to get adequate amounts you only need 10 minutes 3 times per week of midday sun. The American Academy of Dermatology doesn't like that but Dr. Michael Holick, an endocrinologist at Boston University and the world's foremost expert in vitamin D and UV (in her opinion) talks about the bioavailability of vitamin D versus supplementation. She goes to him as a doctor and is pale as pale can be but he gets his vitamin D.

48:15 Re: melanoma mortality and one person dying every 40-45 minutes of skin cancer - includes squamous cell and basal cell and merckel cell are included in that number as well as melanoma. For the first time in 40 years because of new, innovative, targeted therapies, people are surviving. The American Cancer Socitety puts out their facts and figures every year. The mortality - deaths due to melanoma over the last 5 years has gone down 33%. But that said we're still having a significant number of deaths to other forms of skin cancer. There are 7500 deaths annually from melanoma. 2500 from squamous cell, and there are other types of cancer. Melanoma is increasing by 5% every year in the US in adults, espcially in older adults. Some of the problems are that men don't like to use sun protection; they may use. Men die twice as often as women from melanoma. In the north we know melanoma is caused by sunburn which damages the genes in the skin. In the south there is some built-in protection but not sure if one group is healthier than the other.

50:50 Study by Wong showed in the American pediatrics literature showed that there was a 10 times increased incidence in melanoma in young kids in the northern states over those in the southern states.

*51:10 Re: the fear factor - They never talk about the danger of the sun and never talk about the sun being the enemy because there are so many things to be fearful of, they just talk to them about how to be smart, just like you would when you teach a kid how to cook. They tell them, "You're smart, just think about it." The sun is a wonderful thing that keeps us happy and healthy and we can use it well, we just have to use it carefully and be prudent about it. Never say it's bad and no, just say "Think about it." She does say that about indoor tanning though. Most of the UV rays in the tanning beds are so high that young kids were getting skin cancer ten times faster than getting their sun naturally. Damaged tumor suppressor genes in our skin; we have things built in for protection which get turned off if we do certain things.

52:42 The toxic load - the average person pulls the sunscreen off the shelf that just looks the nicest.

Answer: One of the things the FDA said they were going to do last year was that the new labeling was going to be on the front of the label in percentage so consumers could read the label better. One of the reasons the FDA has been concerned about is that people use it so frequently and of what Theresa alluded to with her concern. Dermatologists say 1 ounce of sunscreen every 2 hours (a bottle of sunscreen per day), according to the research. Higher SPFs have 5 different chemical ingredients in them. If concerned a person can use the zinc and titanium dioxide sunscreens which reflect the UV rays away from the skin. Chemical sunscreens absorb and break down the UV rays. The higher the intensity of the UV rays, the faster the sunscreen comes off your skin. They say every two hours but that's based on averages and if you're in a place with higher intensity UV rays then it can break down in an hour.

54:55 Education on the labeling of sunscreens? Answer: Yes.

What are the optimal times for the 10 minutes of sun exposure? Answer: Midday - 12 or 1pm. Dr. Holick's research talks about the vitamin D you can create in June in Cape Cod; it's extreme, the amount of vitamin D that is exposed in your skin with that very tiny dose.

56:05 Sean's question: How much does your family's experience with skin cancer predict your experience? Answer: Tremendously if you have a parent or first degree relative you have an 800% increased risk of getting melanoma compared to someone who doesn't have that history. It's not just the skin type that you inherit but the behaviors. She and her family used to go to the beach every nice day in the summer as her mom was a teacher. They got a lot of exposure as kids. It's a combination of coloring and exposure behaviors. If you have had one melanoma you have a 6% chance of getting another one. If you've had a basal or squamous cell cancer you have a 40% chance of getting another. That's why if you have had skin cancer you have to see a dermatologist regularly for screening.

*57:50 How people can be praying for Maryellen and her organization? Answer: It's a transition time for her organization because they can no longer go into the schools and community to teach, they can't raise money to do what they do. Trying to figure out what they're going to do in the future; that they'll be able to continue the mission of their organization which is to prevent skin cancer one child at a time through education and advocacy. To continue to make this disease less prevalent to our country.

info@melanomaprevention.org or maryellen@melanomaprevention.org

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