Dateline Chicago: MRA and GRACE Immunotherapy Forum

By Louise M. Perkins, PhD

Immunotherapy Patient Forum collage

Dr. Jedd Wolchok & Rusty Cline, Carlea Bauman & Wendy Selig, Drs. Wolchok, Louise Perkins & Suzanne Topalian, Drs. Michael Atkins, Drew Pardoll & Wolchok

On Sunday October 26, MRA and its partner GRACE (Global Resource for Advancing Cancer Education) held a forum for patients/caregivers with melanoma, kidney cancer and lung cancer at the Intercontinental Hotel in downtown Chicago.  Despite the fact that it was a gorgeous day outside—warm and sunny for Chicago in late October—nearly 60 patients/caregivers attended the forum from 8:30 am to 3:30 pm.  The meeting format involved a general session with a series of talks followed by a panel discussion centered on questions from the audience. In addition, there was a lunchtime disease-specific breakout for melanoma, kidney cancer or lung cancer.  There was a lot of energy throughout the day and it was gratifying to see a full house for the meeting!

The content reflected the world-class expertise of the presenters who spoke from their various perspectives covering not only the hard-core science behind immunotherapy (Drew Pardoll) but also clinical insights offered by Michael Atkins, Matthew Helmann, Jason Luke, Sumanta Pal, Suzanne Topalian, and Jedd Wolchok.  We were thrilled to also have presentations by Rusty Cline, a Stage IV melanoma patient who told of his experience with the disease and the current success he is having with anti-PD-1 therapy and Marianne Davis, NP who gave a superb description of immunotherapy side-effects and their management.

I had the pleasure of moderating the melanoma session at which Drs. Suzanne Topalian and Jedd Wolchok spoke on what have we learned from clinical studies to date and the future of melanoma immunotherapy.  If you don’t know it, Drs. Topalian and Wolchok are true giants in the field, as well as MRA-funded investigators and strong supporters of MRA.  Dr. Wolchok heads the Melanoma and Immunotherapy Service at Memorial Sloan Kettering Cancer Center and has been involved in many ground-breaking clinical programs with anti-CTLA4 and anti-PD-1 drugs for melanoma patients. In addition to her outstanding research on melanoma and immunotherapy biomarkers, Dr. Topalian was my predecessor as MRA’s Chief Science Officer, is chair of our Scientific Advisory Panel and is an MRA Board Member. Whew!  It is awe-inspiring to be with these two and we were honored to have them there to share their insights directly with the melanoma patients in the room.

You may be thinking, “Rats—I wish I could’ve been there!”  Well, stay tuned as the entire meeting was filmed and the video should be available via our website in a few weeks.

Altogether, this was a fantastic meeting and I’ll leave you with just a few comments from the presenters that encapsulate the day. Dr. Matthew Hellman remarked that over a century’s worth of laboratory and clinical research is yielding the first fruits of significant progress in the use of immunotherapy against cancer. As Dr. Drew Pardoll stated, now is the time to re-think how we do cancer research based on major advances in immunotherapy for melanoma, lung and kidney cancers.   And as pointed out by Dr. Wolchok, this success with immunotherapy is just the beginning of the end.  We couldn’t agree more.  Let’s just make sure we keep pushing to get to the end as soon as possible.

About the Author

Louise Perkins HeadshotLouise M. Perkins, Ph.D., joined the Melanoma Research Alliance (MRA) as Chief Science Officer in 2013 where she is responsible for the development and implementation of MRA’s scientific strategy.  Her interests center on translational research with specific concentration on genomics, drug discovery and the advancement of novel therapeutic approaches. Prior to joining MRA, she was Chief Scientific Officer at the Multiple Myeloma Research Foundation (MMRF) for five years following a research career of 16 years at two major pharmaceutical companies.

Turning the Tide Against Cancer Through Sustained Medical Innovation

Guest Blog Contributors
Edward Abrahams, Ph.D., President, Personalized Medicine Coalition
Margaret Foti, Ph.D., M.D. (h.c.), Chief Executive Officer, American Association for Cancer Research
Marcia A. Kean, M.B.A., Chairman, Feinstein Kean Healthcare

Turning the Tide Banner

We live in extraordinary times. Over the past decade, advances in science and medicine have transformed our approach to fighting cancer. In many cases, a cancer diagnosis is no longer a death sentence, but rather a chronic condition managed through new therapies. Personalized medicines have moved us away from one-size-fits-all, trial-and-error treatment options to more patient-centered cancer research and care. As we continue to learn more about the molecular underpinnings leading to the more than 200 diseases that comprise cancer, we will be able to more effectively prevent, detect, diagnose, and treat these diseases.

But we also live in a time of great economic pressure, where healthcare costs have reached unsustainable levels and our current cost-constrained environment threatens future innovation and our ability to deliver patient-centered cancer care. In 2011, the Personalized Medicine Coalition, American Association for Cancer Research, and Feinstein Kean Healthcare came together to address the challenge of sustaining progress against cancer while facing the economic imperative to reduce healthcare spending. Since the beginnings of the Turning the Tide Against Cancer initiative, we have seen a groundswell of support from across the cancer community for a shift to a more patient-centric, high-value system of cancer research and care. To do so, we must put the right policies in place that will incentivize scientific discovery and medical progress, while addressing rising healthcare costs.

On October 9, we will convene the second Turning the Tide Against Cancer Through Sustained Medical Innovation national conference to hear from the cancer and health policy communities to further define and address these issues, and refine our recommendations to policymakers.

If we are to continue to realize the extraordinary promise of scientific discovery and personalized cancer medicine, we must advance policies that support a more efficient and effective healthcare system. We hope that this conference provides the platform for examining innovative approaches to conducting personalized, patient-centered cancer research; optimizing the processes through which new medical products are evaluated and approved; and implementing care delivery and payment models that deliver high-value, affordable cancer care to patients.

We invite you to join us for the conference on October 9 in Washington, D.C. or online via webcast and #T3Cancer, and to join us in ongoing collaboration so that together, we can advocate for the policy changes that will result in patient-centric, high-value cancer research and care.

Watch these two-minute videos to learn more about:

 

The Melanoma Research Alliance (MRA) is proud to sponsor and support the Turning the Tide Against Cancer initiative.  As a contributor to the initiative’s expert working group, MRA’s president and CEO Wendy Selig joined fellow experts in oncology, patient advocacy, and health policy to identify and refine specific policy options that can move us toward a more patient-centric, high-value system of cancer research and care.  Through collaboration with all invested stakeholders, we are working to accelerate the pace of scientific discovery and galvanize the field of cancer treatment to benefit all patients.

Why We Stand Up to Melanoma

By Wendy Selig, MRA President & CEO

SU2C 2014 wendy selig and ryan selig

Wendy Selig with her son Ryan

It might have been easy to get caught up in the glitz and glamour of a star-studded Hollywood event this past week in LA as Stand Up To Cancer held its latest prime-time broadcast in support of cancer research.   After all, some of us had the chance to enter the historic theater via a red-carpet lined with paparazzi.  And during the show itself, every few minutes for the entire hour a different A-list celebrity appeared on the stage.

But there was something much more personal and powerful going on in that room where celebrities were coming together with cancer researchers and doctors, foundations, corporations, patients and their families.  It was the sense of hope and promise that these cancer survivors brought to the event that made it most impactful.   Their courage, resilience and resolve is what inspires me most.  The evening really brought home just how important it is for all of us to work together in collaborations that will defeat cancer in all of its forms.

I was fortunate to be there on behalf of the Melanoma Research Alliance (MRA), saluting the life-saving work of our MRA-SU2C Melanoma Dream Team and the Melanoma component of the CRI-SU2C Immunology Dream Team.  These brilliant scientists and physicians have dedicated their professional lives to understanding how melanoma works and designing ways to stop this deadly killer in its tracks.

It was an honor to meet one of the melanoma patients profiled during the broadcast – a lovely woman named Kathy whose doctor, Toni Ribas from UCLA, is an MRA-funded investigator and member of our Medical Advisory Panel.   Despite having been extremely sick as a result of her cancer just months ago, Kathy is now back to living her life, thanks to the exciting progress that has been made in delivering new immunotherapy treatments.  Kathy’s strong desire to be there for her children and new grandchild, brings home the promise and hope we all feel as a result of recent progress, including new therapies like the anti-PD-1 therapy approved just last week by the FDA.

But even with all of the good news coming in the melanoma field, we know that our work is far from finished.   For every story like Kathy’s, there are still too many stories of people who are suffering from this beast.  As I write this, we have just learned of the tragic loss of a young woman named Jackie to this terrible disease.   She was only 22 and, though she fought with such grace and courage for more than two years, she passed away this week.

And that’s why MRA, working with our partners at Stand Up To Cancer and dozens of other allies across sectors, won’t rest until we’ve arrived at the day when no one suffers or dies from melanoma.  That’s why we’ve just launched our next Request For Proposals soliciting high-impact projects from researchers around the world.   We plan to fund at least $7 million in our next grant cycle, building upon the $60 million we’ve already invested.  And that’s why we seek to engage more people in our mission through alliances and collaborations to fund more life-saving research to accelerate progress toward cures for melanoma.

About the Author

Wendy Selig 2013Wendy K.D. Selig is President and CEO of the Melanoma Research Alliance (MRA), a public charity focused on finding and funding the most promising translational melanoma research worldwide that will accelerate progress toward a cure.  Ms. Selig drives and manages MRA’s strategic priorities, research portfolio, engagement with more than 90 corporate and non-profit Allies, and day-to-day operations. MRA, founded by Debra and Leon Black under the auspices of the Milken Institute, is the largest private funder of melanoma research.

 

Expanded Access Programs: A Time of Amazement in Melanoma

Immunotherapy Science Mag CoverFor those of you keeping a close eye on the field of melanoma treatments, you know that we find ourselves living in a simply amazing period of opportunity and innovation—even though there is still a long way to go.

The creation of new cancer drugs is pharmaceutical alchemy, transmuting a base idea into a life-prolonging new treatment that is both safe and effective.  While not magic, drug development is an expensive, incredibly complex and time-consuming process.  And when it works well—when there are exceptionally promising treatments near at hand—the wait for full availability to those agents can be frustrating beyond measure.

Such is the case right now with certain immunotherapy drugs that stimulate the patient’s immune system to recognize and attack cancer.  The data with these immunotherapies targeting the PD-1/PD-L1 axis (anti-PD-1 drugs) is so encouraging that three have earned U.S. Food and Drug Administration (FDA) Breakthrough Therapy designation* which aims to speed FDA approval of the most promising drugs.

This is fantastic, but how are promising drugs made available to patients in the pre-approval period?

To accelerate the accessibility of new drugs to patients, drug developers may open so-called Expanded Access Programs (EAP).  EAPs are compassionate use programs whereby drugs are made available to patients before they are fully approved for sale by the FDA.  EAPs consume resources from treatment centers and drug companies alike, but EAPs endeavor to do the right thing to help patients before drug approval and sale. MRA is proud to have been part of the conversation with companies, clinicians and the FDA that encouraged and facilitated the opening of the anti-PD-1 drug EAPs.

So, why talk about EAPs and anti-PD-1 drugs right now?

Because melanoma is once again a case study for the cutting edge. Presently, three EAPs for melanoma are open with similarly targeted agents (the anti-PD-1 antibodies). Merck’s pembrolizumab was the first EAP to open for melanoma in March 2014, followed by BMS’ nivolumab EAP in May.  Most recently, in July, BMS launched an EAP for the combination of nivolumab with its anti-CTLA4 drug, ipilimumab.  This may not sound like much, but to have three EAPs at the same time for the same cancer is unprecedented.  To have this happen with the same type of drug is nothing short of amazing!

While anti-PD-1 treatments don’t work for everyone and do have certain side-effects, MRA and others are funding research to overcome these limitations.  Nevertheless, the demonstrated progress against melanoma fuels the hope that we’ll look back to 2014 and say, “That was the year everything changed.”

About the Author

Louise Perkins HeadshotLouise M. Perkins, Ph.D., joined the Melanoma Research Alliance (MRA) as Chief Science Officer in 2013 where she is responsible for the development and implementation of MRA’s scientific strategy.  Her interests center on translational research with specific concentration on genomics, drug discovery and the advancement of novel therapeutic approaches. Prior to joining MRA, she was Chief Scientific Officer at the Multiple Myeloma Research Foundation (MMRF) for five years following a research career of 16 years at two major pharmaceutical companies.

*Note: Merck’s anti-PD-1 pembrolizumab received Breakthrough Therapy designation for melanoma in May 2013; BMS’ anti-PD-1 nivolumab received Breakthrough Therapy designation for Hodgkin Lymphoma in May 2014; Genentech/Roche’s anti-PD-L1 MPDL-3280A received Breakthrough Therapy designation for bladder cancer in June 2014.

Immunotherapy & Awareness: Fighting Melanoma on Two Fronts

MRA is saddened by the news that Mark Carter lost his battle with melanoma this week.  We send our condolences to his family and friends.   He had hoped that sharing his story would educate and raise awareness of this deadly disease.    

I first went to see my doctor in 1999 after my wife’s prompting.  She had noticed a mole on my lower right abdomen that had changed shape and wanted me to get it checked.  My doctor told me it was nothing to be concerned about and sent me home.  The mole continued to grow and again my wife told me to go see the doctor.  I did and this time he agreed to remove it.

A week later, my doctor rang me at work and told me that it was malignant melanoma.  Both my wife and I were totally devastated by this news.

Things were a bit of a blur after this, but I had a wide-level excision and regular check-ups for 10 years after surgery.  Finally, I was discharged from the hospital feeling incredibly relieved that the disease had not recurred.

In April 2012, I woke up one morning with a painful lump under my left armpit and the alarm bells started ringing in my head.  I saw my doctor who said he was 80% sure it was an infected lymph node but could not rule out melanoma due to my past history.  The lump never improved, so it was removed by surgery and I was told that the melanoma had returned.  I was now stage IIIC.

The first CT scan taken within three months of my surgery showed that my disease had not been contained, so I was put on the BRAF inhibitor treatment, vemurafenib.  I was now a stage IV terminal patient.  Three months later, the next scan revealed that I had shown a complete response to this amazing drug.  Unfortunately, 13 months later the disease came back.  Vemurafenib is only a life prolonger, not a cure, and resistance usually occurs.

Finally, I was put on the immunotherapy drug, ipilimumab, and a few weeks ago I finished my last infusion.  My next scan will show if I am a responder or not, but even if I do fail to respond I am lucky enough to have been offered the chance to take the new anti-PD-1 drug, nivolumab, under the expanded access scheme in the UK.

Although I had 13 years clear of the disease, I now count my lucky stars that there are treatments available that have kept me alive for 18 months.  I truly believe there has been a huge paradigm shift in melanoma treatments, particularly in the field of immunotherapy.  In maybe five years’ time, melanoma will no longer be a terminal disease but more of a chronic illness.

I now devote most of my time to raising awareness of the risk factors and causes of melanoma.  Still far too many people are ignorant of the dangers of excessive UV exposure.  I believe that education is the key to increasing awareness and ultimately reducing the recent explosion in melanoma incidence.

 

Mark and Liz Carter edit

About the Author

Mark Carter, 56, lived in the United Kingdom with his lovely wife Liz.  He was a UK-based melanoma awareness advocate and anti-sunbed campaigner who worked to raise awareness of this deadly disease.  You can learn more about Mark’s journey and his advocacy work on his blog: http://www.melanomaman.co.uk/

 

 

An Outdoor Enthusiast’s Guide to Playing It Sun Safe

divingoffboatsmaller

Johnie Gall || DirtbagDarling.com

Over the past few years, “fear” has become something of a challenge in my vocabulary. I went from someone who was scared to try surfing to someone who lives out of a revamped Dodge Sprinter van traveling the country in search of adventure. I’ve been fortunate enough to surf in Hawaii, to hike the highest peaks in Colorado, to snorkel with sharks in the Florida Keys, and to free rappel 200 feet from an arch in the middle of the Utah desert.

That’s not to say I’m fearless—there are many things that still frighten me about spending so much time in the outdoors. Bears. Falling. Broken limbs. Getting lost. Melanoma.

Yes, melanoma is a very real consideration of everything I do—though you might not believe me judging my criss-cross lattice of tan lines and premature wrinkles. Tan happens, especially when you spend the majority of your day outdoors (all the sunscreen in the world won’t change that), but so does melanoma, and I’ve chosen not to be so bold as to think it won’t happen to me. That’s why protecting my skin has become as much a part of my adventure prep as loading up my backpack and buying spare fuel.

Don’t get me wrong—I wasn’t always so cautious about skin cancer. Flashback to high school and you’d find me in a tanning booth prepping for prom and roasting at the beach with my friends. I thought hiking was synonymous with sports bras and fishing meant donning nothing more than a bikini. I actually shake my head thinking of the damage I did, but like they always say, hindsight is 20/20.

That lifestyle came to screeching halt when I took my first trip to the dermatologist in my late teens—I had a mole that looked suspicious, and my doctor wanted it off. After the biopsy, he told me it was benign. The danger was over, but the shock that something I’d always (foolishly) thought could never happen to me was actually happening was still there. It was a huge wake-up call, but I was lucky.

After my initial scare, I know that skin cancer prevention begins long before the threat becomes deadly and these days, when being outside is part of my job, I know that shielding my skin doesn’t have to mean sacrificing my active lifestyle—it just means getting creative. Here’s what I do to stay protected:

Sunscreen: Because I spend a lot of time in the water, I need a screen that won’t harm the coral reefs or marine animals when it washes off. I never leave the house without at least coating my hands, feet and face with SPF 30, and follow up with a water resistant one all over my body as soon as we start any activity.

UPF Clothing: How genius is sun protective clothing? It’s one of the first things I look for in my outdoor clothing—the good companies always make their sweat-wicking shirts and pants with UPF 15 or more. When in doubt, I slather on a layer of sunscreen under my clothing, too.

In the water: I rarely go swimming in the ocean without a rash guard—but long gone are the days when donning a quick-drying shirt meant a men’s style tee or neon monstrosity. I’m lucky enough to have a few friends who are at the helm of swimwear companies aimed at protecting skin, so surf leggings and rash guards are always in my bag or stashed in the trunk of my car.

seeaback

Giant. Hats: Here’s the great thing about wearing hats—you never have to worry about what your hair looks like. I can go without a shower for a week (something I often have to do living out of a van) and no one is any the wiser. I stock up on lifeguard-style straw hats at the flea market for summer and keep a collection of wool beanies, baseball caps and floppy felt hats in my closet for the colder months.

And if there’s one thing everyone should buy, it’s a white fishing shirt (yes, even if you hate fishing). They are light, airy, and dry like lightening. Dunk them in the water to cool off on boat rides, or wear them over your hiking clothes on hot days.

Most importantly, I’ve learned to find ways to stay out of the sun. My philosophy is this: being outside is part of my life. It always has been. It always will be. Tan will happen, but as long as I’m making every effort I can to stay safe, then I won’t have any regrets (and hopefully a healthy and happy skin suit!).

 

About the Author: Johnie Gall is the founder of DirtbagDarling.com, an online magazine for women that aims at inspiring and educating women of all skill levels on how to make the most of their outdoor experience. She’s a writer and a creative consultant who calls Pennsylvania home base (but you’re more likely to find her traveling the country in her Dodge Sprinter turned RV).

 

Partners in Prevention: MRA and The Surgeon General’s Call to Action to Prevent Skin Cancer

Two years ago, the Melanoma Research Alliance (MRA) met with Dr. Howard Koh, the Assistant Secretary for Health at the Department of Health and Human Services (HHS), and asked the question that launched a milestone project to elevate melanoma and skin cancer on the agenda for public health: “How can MRA do more in partnership with government health agencies in the fight against skin cancer and melanoma?”

SG Call to Action - Lushniak Koh Selig

Dr. Howard Koh, Wendy Selig and Dr. Boris Lushniak

With his medical background in oncology and dermatology, Dr. Koh needed no convincing about the importance of this cause given the dangers of skin cancer and the public health imperative for a coordinated national prevention strategy. To catalyze development of a national health agenda in the fight against skin cancer and melanoma, Dr. Koh and MRA convened a meeting of the leaders of all the relevant agencies within the U.S. Public Health Service, including the Office of the Surgeon General, the National Institutes for Health (NIH), the Centers for Disease Control (CDC), the U.S. Food and Drug Administration (FDA) and the Agency for Healthcare Research and Quality.

Government officials, medical experts, researchers, and thought leaders joined together 22 months ago for this important gathering and an incredible effort of collaboration began.

Fast forward to July 2014: yesterday with MRA’s President & CEO Wendy Selig in the front row, Dr. Koh and Acting Surgeon General Dr. Boris Lushniak, himself a dermatologist, unveiled The Surgeon General’s Call to Action to Prevent Skin Cancer. The Call to Action seeks to engage all levels of government as well as individuals, private sector institutions and organizations in a coordinated, multifaceted effort to prevent skin cancer.

The Call to Action is the most recent and final achievement in Dr. Howard Koh’s five years as a public servant before he returns to the faculty at the Harvard School of Public Health. MRA thanks Dr. Koh for his tireless work, leadership and advocacy of disease prevention and is honored to be recognized by him as one of the leading “partners in prevention” to instigate a national public health agenda to fight skin cancer and melanoma.

The Surgeon General has sounded the call for the nation to join together to fight this terrible but preventable cancer. The time for action is now.  Join us in the fight against skin cancer and melanoma!