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Save Your Skin Weekly Flashback! [July 16th-22nd]

Welcome to the Save Your Skin Foundation media flashback- your weekly guide to the melanoma landscape, and the activities of the Save Your Skin Foundation! We’ve got a lot of links to share with you this week, but we’d first like to call your attention to our partnership with Innovicares, Canada’s only free manufacturer and patient benefit plan! You can learn more here. We are also running a sunburn survey, and would love for you to take it! You can fill it out here. If you’re looking to brush up on your melanoma knowledge, we’ve been sharing this Aim at Melanoma list of statistics. We also shared with you that Aim at Melanoma is running a free nurse on call service that can be reached at nurseoncall@AIMatmelanoma.org or 1-877-246-2635! Cool, huh?

(WorkSafe BC, “Sun Safety at Work: Employers”)

 

Here are some links we shared with you this week:

This Sydney Morning Herald piece criticizing health advice from celebrities

This Centers for Disease Control and Prevention guide to protecting children from the sun

This article in Melanoma News Today announcing that researchers have identified ways melanoma tumours can bypass immune checkpoints, leading to new research opportunities

This article on 680 CJOB citing Manitoba as one of Canada’s leaders in cancer diagnosis and treatment. Way to go, Manitoba!

This National Institutes of Health article about keeping elderly people safe from heatstroke, and some general tips to stay safe on hot days

This OncLive peer exchange video about incorporating prognostic factors into melanoma (with more videos below!)

This patient testimonial from Leo Pharma Global about living with actinic keratosis

This article in Australia’s ABC News about Keytruda’s success in almost 50% of patients!

This OncLive article reporting that long-term follow up has shown that Sonidegib can be beneficial for basal cell carcinoma

This Leo Pharma Global informational video about actinic keratosis

This article in Science Daily reporting that, despite the 2013 ban, indoor tanning rates of persons under 17 in New Jersey have not declined

This OncLive article reporting the benefit of Vismodegib in basal cell carcinoma patients

This Science Daily article announcing that Spanish researchers have uncovered some genetic reasons why men are more susceptible to skin cancer than women!

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Cameron Institute’s Dr. John A. Bachynsky Offers Angle on Drug Pricing in Canada

In a recent post by the Cameron Institute, Dr. John A. Bachynsky suggests that “there are a growing number of gaps in coverage that calls for some form of universal, comprehensive, national drug coverage to fill these gaps” (Bachynsky 5). These ‘gaps,’ Bachynsky maintains, are caused by the provincial health ministries’ focus on price reduction while not considering the need for specific drugs; he opens the piece with an example wherein a drug priced at $600,000 for only two patients is considered ‘unaffordable’ while a ‘cheaper’ drug can have greater overall costs while being distributed to more patients. Instead, “Canadian government drug plans use the comparison with older, generic drugs ‘which do the same thing’ at a lower price” (4), as opposed to introducing more specific, improved drugs into the market. According to Bachynsky, the government does so by supporting multiple groups that restrict access to drugs and none that improve access, and labelling the prices of new drugs as ‘cost increases’ while there is no prior price to compare it to (3,4).

Naturally, blanket marketing drugs to a population with varied medical needs is problematic, especially for Canadians that are being medicated for long-term chronic illnesses. As Bachynsky points out, the problem with even reasonable drug prices is that they are utilized most often by only a segment of the population, but in high amounts. As Canadians have to pay for medical prescriptions out of pocket, with or without medical insurance, these ongoing costs can be financially draining; Bachynsky states that 25% of the chronically ill patients in Canada attempt to lower costs by stretching or skipping their medication (5), which is inadvisable even if they are using the ideal drug. The “universal, comprehensive, national […] coverage” that Bachynsky calls for is to aid this percentage (5), whom he suggests national assistance programs were initially created to protect.

While medication costs are legitimately high for the average Canadian citizen, they are not as troublesome for the government as provincial bodies would have you believe; Bachynsky cites drug expenditures as only 8% of government health care costs (6). Health care costs for the government have increased via the technological advancement and increase in litigation that comes with the unique and improved drugs the pharmaceutical industry is developing. While this is ‘too costly’ for the government, Bachynsky points out that “use of new technology has increased physician and hospital expense to an even greater degree but there is no outcry over excessive costs or sustainability” (7). The alternative treatments for a patient with no appropriate drugs for their condition utilize the latter technologies in a manner that is expensive, inefficient, and distressing for the patient, with measures such as hospital care, tests, referrals and surgeries. This realization begs the question: “why can we fund a lot of less effective procedures without complaint but not afford to pay for medication that does a better job and is preferred by the patient” (7).

The problem with reducing medication costs, while this would be to the benefit of both the government and the patient, is that pharmaceuticals are less likely to market drugs at a lower price point. Thus, the government’s solution to cut costs directly affects the patient; Bachynsky cites the example of “proposed therapeutic substitution” (10), in which the government will only cover the lowest-cost medical therapy for a variety of related illnesses. If a patient wants the more expensive treatment that is specific to their illness, they have to cover the cost.

As the burden of medication costs is something not experienced by the entire Canadian populace, the relationship between pharmaceuticals and government can go unconsidered by many in a nation that boasts free health care. Thanks to Doctor Bachynsky for writing an angle on that relationship! You can read the original post here.

 

Works Cited

Bachynsky, John A. “Opinion: Drug Prices are Too High!?” Cameron Institute. Cameron Institute (2016).

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Save Your Skin Weekly Flashback! [July 9th-15th]

Welcome to the Save Your Skin Foundation media flashback- your weekly guide to the melanoma landscape, and the activities of the Save Your Skin Foundation! We’ve been very prolific on social media this week, as you’ll see by the links below, and we posted a blog about regional melanoma statistics in Canada, which you can check out here. If you’re just discovering Save Your Skin, or you haven’t looked recently, be sure to drop in on our survivorship initiative I’m Living Proof– we’re working on translating all survivor stories into French!

 

 

Here are some links we shared with you this week:

This Medivizor article about the effects of stereotactic radiosurgery on brain metastasized melanoma

This article in The Brownsville Herald about Super Ray and the Sunbeatables- a sun safety curriculum being rolled out in six Texas primary school districts!

This article in EurekAlert about a study by the Melanoma Research Alliance and Brown University which found that pre-screening of patients for melanoma did not see an increase in dermatologist visits or surgical treatments

This article in High Times about the University of Canberra and Cann Pharmaceutical Australia’s efforts to develop medical-grade cannabis therapy to melanoma patients

The OHSU Dermatology War on Melanoma registration page

This article in The Skin Cancer Foundation Journal about keeping toddlers and babies sun safe

This piece from ABC 6 Action News in Philadelphia about melanoma development in adolescents

This eyelid melanoma case study in The New England Journal of Medicine

This Jama Dermatology review in which the partners of melanoma patients were trained in skin-examination and identifying potential new melanoma

This CBC News article about a gene variant that may cause redheads to have increased skin cancer risk

This New York Post guide to vetting the sunscreens you buy

pERC’s final recommendation for Cotellic and Zelboraf

This article in The Sydney Morning Herald about the increasing incidence of melanoma in Australia

This North Shore News piece about the Save Your Skin Foundation’s ten year anniversary and other achievements!

 

Thanks for reading, have a sun safe week!

 

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The Gender and Geography Statistics of Melanoma in Canada

Last week, we posted a broad overview of the past ten years in melanoma statistics, drawn from the Canadian Cancer Society’s documents Canadian Cancer Statistics 2014, Special Topic: Skin Cancers and 2015, Special Topic: Predictions of the Future Burden of Cancer in Canada. This week, we’re going to focus on more geographically specific statistics; what is the melanoma landscape in your province like?

If you read last week’s post, you’ll know that in Canada, males are generally more likely to be diagnosed with melanoma than females. Over the past 25 years, the age standardized incidence rate (ASIR) of melanoma in Canadian males increased on average 2% yearly, while the ASIR of females increased but 1.5%; however, this percentage has jumped to 2.5% over the past eight years for females, likely due to the advent of tanning salons (2014 79). Between 1993 and 2009, men have seen a lifetime risk increase of 0.8%, while the lifetime risk increase rose 0.7% for women (79). Mortality statistics indicate that the melanoma death rates among Canadian males and females are consistent with diagnosis rates; the age standardized mortality rates (ASMR) have risen 1.2% yearly for males, 0.4% for females.

The higher melanoma incidence rates among men are also generally consistent from province to province, with the exception of Saskatchewan, in which the ASIR in 2010 saw 9.5 melanoma cases in every 100,000 males and 11.3 in every 100,000 females (2014 93, “Table 7.1”).

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(2014 93, “Table 7.1 Annual Percent Change in Age-Standardized Incidence Rates (ASIR) for Melanoma of the Skin by Province and Sex, 1986-2010”)

The comparative incidence rate of melanoma in men is consistently higher in every province (except Saskatchewan), though, as indicated by the annual percent change being greater for Canadian females by 0.6% overall, melanoma rates among women are catching up. The greatest discrepancy between males and females is on Prince Edward Island, which has the highest provincial rate of melanoma in Canada for males (93, “Table 7.1”). The demographic with the lowest melanoma rate in Canada, as of 2010, was women in Newfoundland and Labrador (93, “Table 7.1”).

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(2014 93, “Table 7.2 Annual Percent Change in Age-Standardized Mortality Rates (ASMR) for Melanoma of the Skin by Province and Sex, 1986-2009”)

 

Thankfully, the age-standardized mortality rates (ASMR) for Canadians are considerably lower than the ASIR. “Table 7.2” indicates that while Nova Scotia has the highest melanoma mortality rate among both males and females, the mortality rates for both men and women on Prince Edward Island in 2009 were too low to be recorded, though “Table 7.1” cites PEI as having the highest incidence rate among Canadian provinces for men, and the second highest for women (the highest being Ontario). The mortality rate among women in Newfoundland and Labrador is also too low to be recorded; the lowest recorded mortality rates for both men and women are in Manitoba. It is notable that Quebec, while having one of the lower incidence rates among the provinces for both men and women, has similar mortality rates.

The Canadian Cancer Society states that “variations of melanoma prevalence by province […] largely reflect population size differences and but also differences in rates of melanoma diagnosis and survival” (2014 85), which are important factors to keep in mind when considering the above data. Thank you for reading, and thank you to the Canadian Cancer Society and their document Canadian Cancer Statistics 2014, Special Topic: Skin Cancers for the statistics!

 

Works Cited:
Canadian Cancer Society’s Advisory Committee on Cancer Statistics (2014). Canadian Cancer Statistics 2014. Web.

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Save Your Skin Weekly Flashback [July 2nd-8th]

Welcome to the Save Your Skin Foundation media flashback- your weekly guide to the melanoma landscape, and the activities of the Save Your Skin Foundation! We hope you had a fabulous and sun safe Canada Day long weekend. Thanks to the Toronto Blue Jays, Save Your Skin was able to donate tickets to the Peer Project and to the melanoma survivors featured in our campaign with the Melanoma Network of Canada, #notjustskincancer to a game, at which they also ran the #notjustskincancer campaign! A blog post by Natalie Richardson of The Impatient Patient about the day can be found here. Thanks Blue Jays!

Also this week, Save Your Skin Founder Kathy Barnard was on Roundhouse Radio’s Impact with Don Shafer segment alongside Mary-Jo Dionne and Dr. Joel Claveau, discussing the importance of using sunscreen! Give it a listen here.

If you’re looking to catch up on some reading, check out our recent blog posts “Understanding the Pan-Canadian Pharmaceutical Alliance (PCPA) and How it Affects Those Fighting Skin Cancer” and “Melanoma in Canada: A Short Review of the Past Ten Years”.

 

Here are some links we shared with you this week:

This CTV News Atlantic interview with Dr. Ira Mellman about immunotherapy

This article in Metro Vancouver (featuring Save Your Skin Founder Kathy Barnard!) about checking your loved ones’ moles for possible melanoma

This response by the Urban Public Health Network to Environmental and Radiation Health Services Directorate’s document Consultation- Tanning Guidelines (warning: graphic images from page three onwards)

This Medpage Today video featuring Dr. Omid Hamid on the promising trial treatment T-VEC

This blog post by Save Your Skin’s pal Natalie Richardson over at The Impatient Patient about her sponsorship of the Meaford Soap Box Derby

This Pacific Dermaesthetics piece about EltaMD suncare products

This Huffington Post article about natural sunscreens

This Science Explorer piece about the effects of chemotherapy on the body and mind

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Key Components of Successful Advocacy Campaigns

Really good campaigns have a way of positioning the issue so that people who might normally look at things from one perspective are drawn instead to consider your point of view because of how you’ve communicated it.

Key components of a successful advocacy campaign include the following:

1. Understand the issue and get all the facts.

2. Find out for whom you are advocating and for what you are advocating e.g. client, patient, and consumer group.

3. Identify the decision maker(s) and find out what their motives are.

4. Identify your allies and find out what their motives are.

5. Identify the detractors/opponents and their motives are.

6. Identify the influencers and their motives.

7. Identify undecided but important people / groups from 2, 3, 4, 5 and 6 and what would affect their decisions.

8. Identify interested media and what would motivate their interest.

9. Develop strategies; both public and private e.g. letter writing, postcards campaigns, protests, meetings, and demonstrations.

10.Implement strategies approved by those for whom you are advocating appropriate to the situation.

11. Evaluate the strategies e.g. did you achieve your goals, partially or totally; were those for whom you were advocating satisfied with the results and / or process; were you satisfied with the strategies chosen; would you have chosen other approaches; has the implementation been consistent with the principles of advocacy?

12, If you need to continue, return to 2 above and work through the process as many times as necessary.

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Toronto Blue Jays Take on #NotJustSkinCancer

 

As part of the melanoma awareness campaign, Melanoma survivors from across Canada are sharing their stories in response to the release of the video #NotJustSkinCancer.

Save Your Skin Foundation participated alongside the Melanoma Network of Canada to develop #NotJustSkinCancer. The video features Canadian patients who have experienced a melanoma diagnosis firsthand and have realized that melanoma is not “just skin cancer.” It informs and inspires by shedding light on the very real challenges and fears that come with a melanoma diagnosis, as well as provides hope to other Canadians facing similar situations.

Much to the esteem of the #NotJustSkinCancer team, the Toronto Blue Jays, via the Jays Care Foundation, chose to highlight the campaign during their game on July 2, 2016, as part of their Play Sun Smart program (est. 1999).

The Jays graciously hosted many folks from Save Your Skin Foundation and Melanoma Network of Canada in their Community Clubhouse Suite for their game against the Cleveland Indians on July 2, 2016.

They donated numerous tickets to the #NotJustSkinCancer team, 25 of which, Save Your Skin Foundation gifted to Toronto youth. It was a pleasure to watch all the little ones run the bases after the game, frolicking with “Ace” the Blue Jay mascot, on what is known as Jr. Jays Saturday.

In the Community Clubhouse Suite, the participants of the video, their families, and fellow volunteers enjoyed an afternoon of delicious ballpark snacks, soft beverages, and an unparalleled view of the game-winning Toronto Blue Jays.

We were comfortably seated on cushioned benches in the shade to watch the game, with a gentle breeze keeping us cool in the open-air Rogers Centre (formerly known as the SkyDome). We even got to meet a few Blue Jays Alumni! It was the first Toronto Blue Jays game for a few family members – little to say, the bar was set very high for their future game experiences.

Prior to the game, the Jays Care Foundation arranged for a segment of the #NotJustSkinCancer video to be played on the big screen. In full volume everyone could hear about the importance of raising awareness for melanoma skin cancer; a powerful moment for those involved.

Tearful hugs were exchange as many of the melanoma patients interviewed in the video were reunited. There were feelings of mutual respect for the gravity of the topic and the gratitude felt to be present in the moment.

As a Spokesperson for Save Your Skin Foundation, I would like to thank the Toronto Blue Jays and Jays Care Foundation for sharing the message #BeyondTheBallpark that it is important to #PlaySunSmart. Play Sun Smart – and LIVE sun Smart. It is #NotJustSkinCancer

 On a personal note, I would also like to thank Kathy Barnard and the Save Your Skin Foundation team for allowing my family and I the privilege to attend the game of behalf of Save Your Skin. Because of you I was able to treat my Mother and Step Dad to an afternoon of fun and family. They are huge baseball fans and they were thrilled to experience such fine accommodations.

I was happy to represent #NotJustSkinCancer via Save Your Skin Foundation, while able to give some love back to the family who loves me and has cared for me throughout my melanoma journey. It gave us an afternoon to remember that we would not have had otherwise.

Thank you SYSF and Toronto Blue Jays – a winning team!

A very special thank-you to Roche for funding this skin cancer awareness video! With your support, the messages of the video can touch the lives of many battling skin cancer.

Natalie Richardson, July 2, 2016

 

 

 

 

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Melanoma in Canada: A Short Review of the Past Ten Years

In the decade since the Save Your Skin Foundation began, the Canadian melanoma landscape has seen both positive and negative changes. Advances in treatment methods and greater availability of trial drugs has increased survivorship rates, yet melanoma remains one of the only preventable cancers that has not seen a decline in diagnosis’. Review of the data found in the Canadian Cancer Society’s Canadian Cancer Statistics 2014, Special Topic: Skin Cancers and 2015, Special Topic: Predictions of the Future Burden of Cancer in Canada reveals that more Canadians are being diagnosed with melanoma than ever before.
Melanoma diagnosis rates have risen considerably in the past decade; in 2006, it was estimated that melanoma accounted for 13.6 of every 100,000 male cancer diagnosis’, and 11 of every 100,000 female cancer diagnosis’. This number has climbed to 16.1/100,000 cases for males and 13.2/100,000 for females in 2015 (2015 26-27). Given that the largest risk factor for melanoma is UV exposure, it is possible that this rise is due to the increasing popularity of tanning beds; this suggestion is supported by the yearly increase of 2.9% of melanoma cases among women between 2001-2010, versus 2.3% per year for men between in the same time period (21). However, melanoma is still more prevalent in males than in females; the Canadian Cancer Society estimated that in 2014, 1 in 59 Canadian men would develop melanoma with a 1 in 290 mortality rate, while 1 in 73 Canadian women would develop melanoma with a 1 in 395 mortality rate (2014 78).
While these numbers are growing, so are the survival rates of melanoma in Canada. Based on their follow-up data from between 2004 and 2008, the Canadian Cancer Society found “the one-, five-, and [ten]-year predicted relative survival ratios (RSRs) [to be] 97%, 89% and 86% respectively” (83). The CCS also found that the five-year predicted relative survival ratio has risen “from 85% in 1992-1996 to 89% in 2004-2008” (83), likely due to the rise of new treatment opportunities for melanoma patients.
While the incidence and mortality rates are higher in adult than adolescent Canadians (2014 77), statistics demonstrate that childhood sun safety is critical. Skin cancer is the second most diagnosed among Canadian youth 15-35 years old (Canadian Skin Cancer Foundation, “About Skin Cancer”), and the Canadian Cancer Society has found links between intermittent and intense sun exposure (resulting in burns) in adolescence and the development of skin cancers later in life (2014 87). It is imperative that parents ensure their children are protected during their outdoor activities, not only during their summer activities but also while partaking in winter sports, as snow can reflect UV rays. Preventing sunburns in adolescence, and teaching children about sun safety, can reduce their chances of developing melanoma as an adult.
Maintaining a sun safe attitude is not just important as an adolescent; no tan is a safe tan, and exposure to UV rays at any stage in life can contribute to the development of melanoma! If you are interested in reading more about sun safety, Save Your Skin’s recent blog post on the topic can be found here. For more information about cancers in Canada, we recommend a read of the Canadian Cancer Society’s Canadian Cancer Statistics 2014, Special Topic: Skin Cancers and 2015, Special Topic: Predictions of the Future Burden of Cancer in Canada. Thank you for reading, and remember sun safety during your outdoor activities!

 

Works Cited:

Canadian Cancer Society’s Advisory Committee on Cancer Statistics (2014). Canadian Cancer Statistics 2014. Web.

Canadian Cancer Society’s Advisory Committee on Cancer Statistics (2015). Canadian Cancer Statistics 2015. Web.

Canadian Skin Cancer Foundation. “About Skin Cancer”. Web.

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Understanding the pan-Canadian Pharmaceutical Alliance (pCPA) and how it affects those fighting skin cancer

Guest blog post by Elizabeth Eakin

Within Canada, many patients are forced to move outside of their homes to receive the treatment they need. As skin cancer is affecting more and more Canadians each year, a high volume of patients all over Canada are forced to travel in order to receive their suited treatment. Currently, Melanoma is the fasting growing cancer in Canada, with an estimated 6,800 diagnosed in 2015. As the incidence continues to increase, greater access and availability to treatment are needed. One of Save Your Skin foundations immediate goals is to provide melanoma patients with access to information about trial drugs as well as provide financial support to allow patients access to their suited treatment. This is an intricate and expensive task that takes knowledge of the drug process within Canada to fully understand.

Within Canada, drug authorization of sales is an extremely long process. It can take up to two years before the drug is approved for review. During these transparent years, the trial drug undergoes scientific testing’s regarding safety, effectiveness and quality of manufacturing. From there, the pan-Canadian Oncology Drug review products, Common Drug Review (CDR) and the non-oncology drugs review (pCODR) overlook the drug. The review time includes comparisons to existing drugs on the market as well as cost-effective evaluations. Once assessed, the review is sent out to all participating federal, provincial and territorial drug benefit plans in Canada, which make the pan-Canadian Pharmaceutical Alliance (pCPA). They decide whether joint pan-Canadian negotiations will occur for the drug product. If they decide to move forward, one jurisdiction will lead with the manufacturer, while an agreement between all other participating jurisdictions will be signed. If an agreement can be reached between participating jurisdictions and the manufacturer, a letter of intent will be signed and shared with all participating jurisdictions. After the pCPA process, each jurisdiction is then responsible for individually making a decision on funding through their public drug plan. These plans are then entered into a jurisdiction specific product listing agreement with the manufacturer.

After this long process individuals can gain access to the pharmaceutical drug depending if the province supports and funds it. The specificity of which provinces/territories provide access and funding makes the process long and tumultuous. In order for each patient to get the treatment they need, many need to travel, adding further expenses and stress. For those struggling with skin cancer, the Save Your Skin foundation does all it can to provide patients with access to trial treatments as well as financial and emotional support. As a foundation, we want to help each patient receive the best individual care possible, so they can fight their hardest against this disease.

Figure 1: pan- Canadian Pharmaceutical Alliance

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Save Your Skin Weekly Flashback [June 25th-July 1st, 2016]

Welcome to the Save Your Skin Foundation media flashback- your weekly guide to the melanoma landscape, and the activities of the Save Your Skin Foundation! It’s an exciting week for the skin cancer community, with the Post-ASCO 2016 Conference in Munich, Germany and the Summit for Cancer Immunotherapy (Canadian Cancer Immunotherapy Consortium and BioCanRx) in Halifax, Nova Scotia, which Save Your Skin Founder Kathy Barnard opened with a discussion of life “beyond the curve” of melanoma. Keep an eye on our facebook page and twitter for updates on both conferences!

We are also excited to announce that we have been featured in the Summer 2016 issue of Canadian Skin, which includes a profile on the Save Your Skin Foundation and a testimonial from one of our board members, Christian Mosley!

Finally, we are still running our survey on sun safety behaviour, which you can fill out here. We appreciate it!

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Here are some links and images we shared with you this week:

 

– This image from Post-ASCO in Munich, which suggests an alteration to the ABCDE (now the ABCD!) rules of clinical mole recognition:

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This article from Modern Medicine Network outlining the S3 international guidelines for actinic keratosis

This article from Dermatology News reporting the findings of a study done by the US National Cancer Institute’s Surveillance, Epidemiology, and End Results program (SEER), which “highlight[s] the heavy death toll of thin melanomas”

This article from Ecancernews reporting the suggested links between immunotherapy drugs, such as ipilimumab and nivolumab, and arthritis

This News Wire article announcing that Merck has approved Keytruda for the treatment of patients with unresectable or metastatic melanoma that have not been treated with ipilimumab

This article in Bel Marra Health suggesting that the development of vitiligo may be indicative of immunotherapy response

This article in Trib Live about awesome Mohs histologist Danielle Deroy Pirain, who had a sunscreen dispenser installed in Mt Lebanon Park, Pennsylvania!

This link to the Aim at Melanoma Foundation’s Memorial Wall. If you would like to include a loved one’s name on the Memorial Wall, you can do so here.

-And this Fierce Medical Devices article about the partnership between Australia’s IBM Research and Melanoma Institute Australia to build on IBM’s MoleMap, which seeks to identify patterns in early stage melanoma

 

 

Thank you for reading, be sun safe out there!

 

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