GRACE :: News/Info

Is the system of clinical trials fair for patients? Do you believe in it?

I just watched the movie “Dallas Buyers Club”, about the challenges of getting new drugs for HIV/AIRS just as the first effective treatments were being identified in early clinical trials. It portrays the DEA, FDA, and medical establishment as essentially obstructing the process of patients getting access to life-sustaining treatments, and it led me to wonder whether patients and caregivers feel that the system of novel agents being tested in clinical trials is fair or whether the medical establishment today seems to be protecting people from themselves in unwanted ways.  The movie takes its title from a legal workaround that facilitated people buying non-FDA approved drugs from outside sources outside of clinical trials, learning on the fly in a way that seems far more nimble than the sclerotic, formal trial system being practiced by the doctors.

In truth, the movie doesn’t make physicians clearly evil, as they debate the merits of placebo-controlled trials in order to determine whether treatments are safe and effective.  AZT is shown as having potential efficacy but also leading to severe, dangerous side effects in early testing as a single agent at a higher dose than used in later combinations, though I think the overall sense from the movie is that the people pursuing treatments based on collective experience (pre-social media sharing, mind you) were outpacing the pace of progress in the clinical trials system, with its ties to “big pharma” corporations that are suggested as pulling the strings of the puppets in the FDA. 

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A New Era of Growth for GRACE: Welcoming Carlea Bauman as Our First Executive Director!

CB head shot

One of the biggest steps in the development of a nonprofit organization is the transition from being founder-run to bringing in support of an experienced leader in the nonprofit world. On behalf of the GRACE organization, I’m thrilled to welcome Carlea Bauman as our first Executive Director, as she starts officially in early October.

Here is just a brief sketch of her professional history:

Carlea brings over 20 years of experience in nonprofit management and health advocacy. She joins The Global Resource for Advancing Cancer Education as its first executive director and will direct its growth in revenue, outreach and programs.

From 2006 to 2013, she led the patient advocacy group Fight Colorectal Cancer (formerly C3: Colorectal Cancer Coalition) as its first executive director and later, president. In that capacity, she testified before Congress and the Food and Drug Administration, led the organization through a rebranding, grew its revenue from $340,000 to $1.3 million annually, and increased its advocacy participation by over 200 percent.

Prior to working for Fight Colorectal Cancer, she worked as the National Director of Grassroots Advocacy for the American Diabetes Association and as Press Secretary for the groundbreaking Florida “Truth” Campaign, an initiative that resulted in a 10 percent drop in teen smoking within a single year.

Her passion for health advocacy is personal: Within a 14 month period between 1999 and 2000, she lost her mother to complications of Type 1 diabetes and her father to lung cancer and myelodysplastic syndrome.

Carlea’s career initially started in politics working for the late Florida Governor Lawton Chiles and later at the Democratic Congressional Campaign Committee in Washington, DC. She is a graduate of Florida State University and resides in Northern Virginia with her husband and children. Continue reading


Off to ASCO

ASCO 2013_1 I’m heading off to the ASCO Annual Conference in Chicago, IL, now, along with about 30,000 other cancer specialists from around the world. While there, I’ll be chairing an educational session about management options for acquired resistance, chairing the metastatic NSCLC oral session, speaking to the trainees (fellows) just completing their specialization in medical oncology about the highlights in the lung cancer track this year, tweeting updates in real time as new data are presented (@JackWestMD on twitter), hosting a GRACE reception for our faculty and other guest participants in the cancer community, and doing a videotaped round table discussion with Drs. Nate Pennell and Mary Pinder that will cover some of the highlights and be released as podcasts in the coming weeks.

With so much going on, I won’t be checking in the GRACE site that often, so while people should feel free to communicate with each other, offer updates, ask questions, cheer each other on, etc., I would say that the next 5 days is a particularly bad time to be looking for in-depth insights from me or any other faculty member. We’re all in meetings that go from 6 AM to 10 PM most days, then returning home to clinics full of patients who are anxious to continue with their care needs. I’ll check in as I can, but please forgive me and other faculty if we’re less reachable than usual.


How to Find the Latest Info Directly from ASCO 2013

We’re now in full-on pre-ASCO mode, with the conference just under two weeks away (May 31 to June 4th).  Between now and then, I’ll be working on some presentations I’ll be doing while there, as well as planning a round table with GRACE faculty members Nate Pennell (from Cleveland Clinic, Cleveland, OH) and Mary Pinder (from Moffitt Cancer Center in Tampa, FL).  On the morning of Tuesday, June 4th, I’ll be sitting down with them to discuss some of the most interesting and promising work in lung cancer that we’ll have just seen coming out of ASCO 2013.  This will be just preliminary impressions without all of the data or a lot of detail, but we’ll be putting out the video from this presentation as a series of podcasts as early as later that week (around June 7th) and continuing until it’s all available probably over a couple of weeks.  

We’ll then plan to follow with a live webinar on ASCO highlights with a couple of experts presenting the key results in more detail, probably in the first half of July.  Details to come.

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Faculty Expert Videos from IASLC Targeted Therapies in Lung Cancer Conference

 

Here’s the growing list of videos done at the International Association for the Study of Lung Cancer (IASLC) 13th Annual Targeted Therapies in Lung Cancer meeting.

 

Dr. William Pao (Vanderbilt) on the My Cancer Genome Project

Dr. Geoffrey Oxnard (Dana Farber): What is an Inherited EGFR T790M Mutation, and What Does It Mean?

Dr. Lecia Sequist (Massachusetts General Hosp) on Molecular Marker Testing in Advanced NSCLC: What, Who, and When?

Dr. David Spigel (Sarah Cannon Cancer Ctr): What are the Most Promising Targeted Therapies for Lung Cancer in the Next Few Years?

Dr. Greg Riely (Memorial Sloan-Kettering): How Should We Approach Acquired Resistance to Targeted Therapies in Advanced NSCLC?

Dr. Heather Wakelee (Stanford): How Should We Use Molecular Marker Information for Management of Earlier Stage Non-Small Cell Lung Cancer?

Dr. Karen Kelly (Univ. California, Davis): What Molecular Markers Do You Routinely Send for in Your Patients with Advanced Non-Small Cell Lung Cancer?

Dr. Sarah Goldberg (Yale): How Do You Discuss the Pros and Cons of Molecular Testing, with Potential Delays and Need for Rebiopsy?

Drs. Ross Camidge (Univ. of Colorado) and Corey Langer (Univ. of Pennsylvania) Who Do You Recommend Repeat Biopsy for if There Isn’t Enough Tissue for Molecular Testing?

Dr. Bob Doebele: Will We Be Able to Use Molecular Markers and Apply Targeted Therapies to Broader Lung Cancer Subtypes in the Near Future?

Dr. Phil Bonomi: Is Maintenance Therapy after First Line Chemotherapy a Mandate, An Option, or a Neither?

Dr. Alan Sandler: Is There a Danger that the Latest Advances in Molecular Testing Are Only Available in Limited Specialty Settings?

Dr. Ravi Salgia on Management Strategies for Acquired Resistance to Targeted Therapies, Single Focus or More Diffuse

Dr. Rosalyn Juergens: What Novel Therapies Are You Most Optimistic About as Potential Lung Cancer Treatments in the Next Few Years?

Dr. WIlliam Pao on the Goals for Developing MyCancerGenome.org

Dr. Karen Reckamp: Recommending a Repeat Biopsy, at Initial Diagnosis or with Acquired Resistance to a Targeted Therapy

Dr. Geoffrey Oxnard on Managing Acquired Resistance to EGFR Inhibitor Therapy (and Probably Crizotinib, Too)

Dr. Greg Riely: How I Use Molecular Marker Information in Earlier Stage NSCLC Patients

Dr. Lecia Sequist: Can We Bring The Advances in Targeted Therapy to Squamous NSCLC and Broader NSCLC Populations?

Dr. Monty Pal on the Current Best Practices for Early Stage Kidney Cancer

Dr. Larry Einhorn: How Can We Replicate the High Cure Rates We’ve Achieved for Testicular Cancer in a Wide Range of Cancers?

Dr. Larry Einhorn: Will Costs of Care Limit Our Ability to Deliver Cancer Treatments?

Dr. David Spigel: Which Lung Cancer Patients Should We Be Doing Molecular Marker Testing For, and Should We Do “Reflex Testing”?

Drs. Ross Camidge and Corey Langer: Which New Targets and Therapies Could We Bring to the Lung Cancer Clinic in the Near Future?

Dr. Sarah Goldberg: The Potential Value of a Treatment Break as an Alternative to Maintenance Therapy in Advanced NSCLC

What Molecular Markers Do You Prioritize for Molecular Testing in Advanced NSCLC, and Who do you Test?

Do You Seek and Do You Use Molecular Marker Information in Patients with Early Stage NSCLC?

Dr. Pal on the Role of Interleukin-2 (IL-2) in Advanced Kidney Cancer Today

Dr. Monty Pal: Reviewing Bladder Cancer Stages, the Role of Surgery, and the Potential Role of Chemotherapy for Localized Bladder Cancer

Dr. Sandler on Options for Maintenance Therapy: Switch, Continuation, or a Treatment Break?

Dr. Rosalyn Juergens on Managing Acquired Resistance to Targeted Therapies for Advanced NSCLC

Dr. Karen Reckamp: Will Our Gains in Targeted Therapies Be Generalizable to a Wider Range of Lung Cancers?

Dr. Heather Wakelee: My Approach to Repeat Biopsies For Advanced NSCLC Patients Who Have Insufficient Tissue for Molecular Testing

Dr. Geoffrey Oxnard on Translating the Benefits of Molecular Oncology More Broadly: The Tissue is the Issue

Dr. Monty Pal on Leading Options for First Line Treatment of Advanced Kidney Cancer

Dr. Larry Einhorn: What are the Biggest Challenges We Face in Delivering Effective Cancer Care in the Next Decade?

Dr. William Pao on “How Concerned Should We Be About Different Testing Methods, as well as the Heterogeneity of Different Biopsy Results from the Same Patient?”

Dr. Ravi Salgia on “My Approach to Maintenance Therapy for Advanced NSCLC

Dr. Greg Riely on the Most Promising Upcoming New Targeted Agents and Molecular Pathways for Lung Cancer Treatment

Dr. Alan Sandler: My Approach to Acquired Resistance for Targeted Therapies in Lung Cancer

Dr. Natasha Leighl’s Highlights in Lung Cancer from 2012: Developments for EGFR Mutation-Positive NSCLC

Dr. David Spigel: We’ve Probably Made Maintenance Therapy More Complicated Than It Needs To Be

What is the Right Surgery for Early Stage Kidney Cancer?, by Dr. Monty Pal

Drs. Ross Camidge and Corey Langer: How Should We Manage Acquired Resistance with a Single Lesion or More Diffuse Progression?

Dr. Heather Wakelee on the Most Promising New Agents and Pathways for Treating Lung Cancer in the Coming Years

Dr. Lecia Sequist on Relevant Emerging Molecular Targets in Lung Cancer

Dr. Sarah Goldberg on the Utility of Molecular Marker Results in the Adjuvant Setting for Early Stage Non-Small Cell Lung Cancer

Dr. Geoffrey Oxnard on What Molecular Markers to Test for in Advanced NSCLC, and in Whom?

Dr. Greg Riely on “I just found out I have an EGFR mutation, and I’m in the middle of chemo. What now?”

Dr. Karen Reckamp on “Which patients do you send molecular marker testing for, and what tests do you seek?”

Dr. Ravi Salgia: How Do I Discuss the Side Effects of Targeted Therapies, as Compared with Chemotherapy?

Dr. Heather Wakelee: How Should We Manage Acquired Resistance with a Single Lesion or More Diffuse Progression?

Dr. Lecia Sequist: Will New Forms of Mutation Testing Become Available Beyond the Major Research Centers?

Drs. Ross Camidge and Corey Langer: Will Our Gains in Targeted Therapies Be Generalizable to a Wider Range of Lung Cancers?

Dr. Sarah Goldberg: Recommending a Repeat Biopsy with Acquired Resistance to a Targeted Therapy

Dr. David Spigel on the Utility of Molecular Marker Results in the Adjuvant Setting for Early Stage Non-Small Cell Lung Cancer

Dr. Karen Kelly on “My Approach to Maintenance Therapy for Advanced NSCLC

Dr. Phil Bonomi on the Most Promising Upcoming New Targeted Agents and Molecular Pathways for Lung Cancer Treatment

Dr. Greg Riely on Muliplex Next Generation Sequencing and its Effect on Molecular Oncology Practice

Dr. Geoffrey Oxnard: Are Patients or Payers Objecting to Repeat Biopsy?

Dr. Ravi Salgia on “Which patients do you send molecular marker testing for, and what tests do you seek?”

Dr. Larry Einhorn on “What Have Been the Most Significant Changes in Cancer Care over the Past Decade or Two?”

Dr. Rosalyn Juergens on “I Just Found Out I Have an EGFR Mutation, and I’m in the Middle of Chemo. What Now?”

Dr. Lecia Sequist: How Should We Manage Acquired Resistance with a Single Lesion or More Diffuse Progression?

Dr. Sarah Goldberg: What Methods Do I Use to Obtain Samples for Molecular Testing?

Dr. David Spigel: My Approach to Repeat Biopsies For Advanced NSCLC Patients Who Have Insufficient Tissue for Molecular Testing

Dr. Karen Kelly on the Most Promising Upcoming New Targeted Agents and Molecular Pathways for Lung Cancer Treatment

Dr. Phil Bonomi, Rush University: Will Our Gains in Targeted Therapies Be Generalizable to a Wider Range of Lung Cancers?

Dr. Sumanta (Monty) Pal on the Role of Chemotherapy in the Treatment of Kidney Cancer

Drs. Ross Camidge and Corey Langer: Will New Forms of Mutation Testing Become Available Beyond the Major Research Centers?

Dr. Greg Riely: Recommending a Repeat Biopsy with Acquired Resistance to a Targeted Therapy

Dr. Rosalyn Juergens on the Utility of Molecular Marker Results in the Adjuvant Setting for Early Stage Non-Small Cell Lung Cancer

Dr. Lecia Sequist on Multiplex Next Generation Sequencing and its Effect on Molecular Oncology Practice

Dr. Sarah Goldberg: How Should We Manage Acquired Resistance with a Single Lesion or More Diffuse Progression?

Dr. David Spigel: How Do You Discuss the Pros and Cons of Molecular Testing, with Potential Delays and Need for Rebiopsy?

Dr. Karen Kelly: Do You Continue a Treatment Beyond 4-6 Cycles to Exhaust its Benefit?

Dr. Geoffrey Oxnard on the Most Promising Upcoming New Targeted Agents and Molecular Pathways for Lung Cancer Treatment

Dr. Ravi Salgia on the CollabRx System for Matching Patients with Mutations to Clinical Trials

Dr. Larry Einhorn: Will New Forms of Mutation Testing Become Available Beyond the Major Research Centers?

Drs. Ross Camidge and Corey Langer on “Which patients do you send molecular marker testing for, and what tests do you seek?”

Dr. Sumanta (Monty) Pal: What is the Role of Surgery in the Treatment of Metastatic Kidney Cancer?

Dr. Phil Bonomi, How Do I Discuss the Side Effects of Targeted Therapies, as Compared with Chemotherapy?

Dr. Greg Riely on “My Approach to Maintenance Therapy for Advanced NSCLC

Dr. Sarah Goldberg on “I Just Found Out I Have an EGFR Mutation, and I’m in the Middle of Chemo. What Now?”

Dr. Rosalyn Juergens: Recommending a Repeat Biopsy with Acquired Resistance to a Targeted Therapy

Dr. David Spigel: How Should We Manage Acquired Resistance with a Single Lesion or More Diffuse Progression?

Dr. Karen Kelly: My Approach to Repeat Biopsies For Advanced NSCLC Patients Who Have Insufficient Tissue for Molecular Testing

Dr. Ravi Salgia: Will Our Gains in Targeted Therapies Be Generalizable to a Wider Range of Lung Cancers?

Dr. Larry Einhorn: Are You Optimistic That a Supercomputer Such as Watson Will Be Able To Improve Cancer Care?

Dr. Sumanta (Monty) Pal: What Are the Options for Second Line Treatment of Kidney Cancer?

Dr. Heather Wakelee on “My Approach to Maintenance Therapy for Advanced NSCLC

Dr. Sarah Goldberg on “Which molecular marker tests do you seek?”

Dr. Rosalyn Juergens: Will New Forms of Mutation Testing Become Available Beyond the Major Research Centers?

Dr. David Spigel: How Do I Discuss the Side Effects of Targeted Therapies, as Compared with Chemotherapy?

Dr. Phil Bonomi: How Should We Manage Acquired Resistance with a Single Lesion or More Diffuse Progression?

Dr. Karen Kelly: Recommending a Repeat Biopsy with Acquired Resistance to a Targeted Therapy

Dr. Greg Riely: My Approach to Repeat Biopsies For Advanced NSCLC Patients Who Have Insufficient Tissue for Molecular Testing

Dr. Sumanta (Monty) Pal: What Are the Main Types of Kidney Cancer and Are They Managed Differently?

Dr. Heather Wakelee: Will Our Gains in Targeted Therapies Be Generalizable to a Wider Range of Lung Cancers?

Dr. David Spigel: Will New Forms of Mutation Testing Become Available Beyond the Major Research Centers?

Dr. Ravi Salgia: What is Your Opinion of Patients and Caregivers Searching the Internet for Information?

Dr. Sarah Goldberg on “Which patients do you send molecular marker testing for?”

Dr. Rosalyn Juergens on “My Approach to Maintenance Therapy for Advanced NSCLC

Dr. Geoffrey Oxnard: Recommending a Repeat Biopsy with Acquired Resistance to a Targeted Therapy

Dr. Greg Riely: Will Our Gains in Targeted Therapies Be Generalizable to a Wider Range of Lung Cancers?

Drs. Ross Camidge and Corey Langer: How Do You Make Use of a Broad Molecular Profile Brought by a Patient?

Dr. Phil Bonomi: For Which Advanced NSCLC Patients Do I Recommend Repeat Biopsies If They Have Insufficient Tissue for Molecular Testing?

Dr. Karen Kelly: Will New Forms of Mutation Testing Become Available Beyond the Major Research Centers?

Dr. Larry Einhorn: What is Your Opinion of Patients and Caregivers Searching the Internet for Information?

Dr. Heather Wakelee on “Which molecular marker tests do you seek?”

Dr. David Spigel: Will Our Gains in Targeted Therapies Be Generalizable to a Wider Range of Lung Cancers?

Dr. Geoffrey Oxnard: For Which Advanced NSCLC Patients Do I Recommend Repeat Biopsies If They Have Insufficient Tissue for Molecular Testing?

Dr. Rosalyn Juergens: How Do You Discuss the Pros and Cons of Molecular Testing, with Potential Delays and Need for Rebiopsy?

Dr. Phil Bonomi: Recommending a Repeat Biopsy with Acquired Resistance to a Targeted Therapy

Dr. Greg Riely: Will New Forms of Mutation Testing Become Available Beyond the Major Research Centers?

Drs. Ross Camidge and Corey Langer on “Which patients do you send molecular marker testing for?”

Dr. Bob Doebele on the Most Promising Upcoming New Targeted Agents and Molecular Pathways for Lung Cancer Treatment

Dr. Sarah Goldberg: Will Our Gains in Targeted Therapies Be Generalizable to a Wider Range of Lung Cancers?

Dr. Ravi Salgia: For Which Advanced NSCLC Patients Do I Recommend Repeat Biopsies If They Have Insufficient Tissue for Molecular Testing?

Dr. David Spigel on “Which molecular marker tests do you seek?”

Dr. Philip Bonomi: Gefitinib and Later Generations of EGFR Inhibitors

Dr. Bob Doebele: How Should We Manage Acquired Resistance with a Single Lesion or More Diffuse Progression?

Dr. Greg Riely on “Which patients do you send molecular marker testing for, and what tests do you seek?”

Dr. Rosalyn Juergens: Will Our Gains in Targeted Therapies Be Generalizable to a Wider Range of Lung Cancers?

 

We thank these experts for their generosity with their time and expertise in providing this information to the lung cancer community.


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