This evening (December 10, 2014) I was fortunate enough to attend the 2014 GSK Melanoma Virtual Summit. This was an online gathering of bloggers and melanoma advocates and organizations to discuss recent developments in the fight against melanoma. I’ll admit, I wasn’t very good at keeping notes, so what I share here will be a very summarized and abbreviated account of the 90 minute session.
First of all, we all introduced ourselves. I was thrilled to see the faces of familiar friends and “meet” those I’ve followed for a few years. I’ll share respective blog and websites at the end of this piece. There were also representatives from various melanoma advocacy groups (see the list at the end).
First on the agenda was a discussion of a patient’s perception during initial diagnosis. GSK, as a drug manufacturer, interacts primarily with doctors and medical facilities and not so much actual patients. They’ve been investigating the patient point of view more and presented some insights. The most riveting part of this section of the summit was not GSK’s presentation, but the opportunity for melanoma warriors/survivors to tell their tale. My friends Timna and Rich shared their reactions and experience with initial diagnosis. It was encouraging to see a representative of the “Big Pharma” corporate healthcare world (GSK) listen to real human stories and emotions.
The next segment dealt with updates on recent policies related to melanoma. July’s “Call to Action” by the Surgeon General emphasized. This is not a federally funded venture, but a true call to action in local communities. Organize the building of shaded areas in parks. Increase awareness of UV dangers. Promote sun-safe policies in schools and in the community. Participate in fund-raising and awareness-raising activities. Support legislation to ban the use of tanning beds for minors. While it may have been the same message from July, it was an effort to recharge our efforts.
Others also presented updates on the recently signed Sunscreen Innovation Act. Now, new formulations of sunscreen will be expedited for FDA approval. This will introduce a slew of sunscreen formulas to the United States that already exist in other countries. I asked if the increased options in sunscreen might help reduce the price of sunscreen…perhaps through increased competition. Unfortunately, this could not be predicted or known at this time.
Additionally, there was discussion about the FDA Guidelines on sun lamps (warning stickers and reclassification of tanning beds), funding for various research, and details about research on genetic testing, specifically on those melanoma patients not fortunate enough to have the B-RAF gene (as there is no effective treatment for this 50% of the melanoma patient population). This last effort is lead by the SU2C/MRA Melanoma Dream Team. In addition, there was a report on the Brain Mets tissue bank to help research brain metastasis. Over half of all melanoma deaths occur from brain metastasis. Count my brother Jeff as one of those.
The summit closed with a brief impromptu discussion about pediatric melanoma and the apparent increase in such cases. It was noted by one participant that 10 years ago, melanoma research concentrated on men in the 50’s. Now, the research is heading to younger ages…20’s and now even to pediatric patients. It’s a disturbing trend.
With the upcoming merger/acquisition/whatever of GSK with Novartis, there’s some concern that this summit will continue going forward. The GSK group seemed confident that it will continue. I certainly hope so. Does this group of bloggers and advocates create new and innovative “legislation” against melanoma? No. But as my friend Rich commented, “The value of these things is to establish and build personal connections and relationships in the melanoma advocacy community. Only good things can come from that.”
Thank you to the following organizations for your participation:
AIM at Melanoma – aimatmelanoma.org
Melanoma International Foundation – melanomainternational.org
Melanoma Research Alliance – curemelanoma.org
Melanoma Research Foundation – melamoma.org
Skin Cancer Foundation – skincancer.org
Skin of Steel – skinofsteel.org
The following is a list of attending bloggers as supplied by the GSK organizers. My apologies for any that attended but were not on the provided list or that I simply forgot to type (it’s late at night…lol):
TJ Sharpe - http://www.philly.com/philly/blogs/patient1
Timna Understein - http://respecttherays.blogspot.com.es/
Steve and Jennifer “Who Dat” Martin - http://martinfamilyjourney.blogspot.com/
Martha Bishop - http://melanomas.bishless.com/
Alisa Linton - http://joshalisa.blogspot.com/
Julie Marzano - http://juliesmelanomajournal.blogspot.com/
Chelsea Price Dawson (and her little dog, too) - http://adventurewithmelanoma.blogspot.com/
Rich McDonald - http://hotelmelanoma.blogspot.com/