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/
No comments:
Post a Comment