Cancer Policy Monitor: March 13, 2018      

Key Policy Updates from Capitol Hill      

Following the bipartisan budget agreement, Congress continues its work to complete the appropriations process for Fiscal Year 2018 with a deadline to finish before the current continuing resolution ends on March 23. Meanwhile, the FY 2019 appropriations process has begun and members are submitting their requests to the Appropriations subcommittees.

Fiscal Year (FY) 2018 Appropriations Process

Congress continues its work to complete the appropriations process for FY 2018 and is expected to finish before the current continuing resolution ends on March 23rd.  AACR, its members and partner organizations continue to advocate for an increase of at least $2 billion for the National Institutes of Health (NIH) above FY 2017 levels in order to continue the momentum from the previous two years and build on our national investment in medical research.  This would mean a total of at least $36.1 billion for the NIH.  Based on appropriations bills advanced before the recent budget agreement, as well as recent reports from Capitol Hill, there is strong bipartisan support for such an increase.

FY 2019 Appropriations and NIH

While Congress is still working on final FY 2018 spending levels, the FY 2019 appropriations process has begun and members are submitting their requests to Appropriations subcommittees.  The AACR is urging Congress to provide at least $38.4 billion for the NIH in FY 2019.  This would ensure that the additional funds made available through the 21st Century Cures Act for the Beau Biden Cancer Moonshot and other targeted initiatives supplements the NIH base budget.

Alex Azar, the Secretary of the Department of Health and Human Services, which includes NIH and NCI, will testify about the FY 2019 budget before the House Appropriations Labor, Health and Human Services, Education, and Related Agencies Subcommittee on Thursday, March 15, 2018 at 10:00 AM. The hearing will be webcast at this link.

Childhood Cancer STAR Act

On February 28, the STAR act passed unanimously out of the Senate Health, Education, Labor and Pensions (HELP) Committee.  The next step for this bill is consideration by the full Senate; if it passes there it will then go to the House.  An earlier version of the STAR Act was passed by the House at the end of 2016, but there was not sufficient time for the bill to be considered in the Senate before the session ended.  There are over 350 co-sponsors for the STAR Act in the House and at least 48 Senators have signed on as co-sponsors.

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Science Policy and Government Affairs Sessions at the AACR Annual Meeting 2018     

The AACR Annual Meeting 2018, taking place April 14-18 in Chicago, will include several events organized by the Office of Science Policy and Government Affairs. These include sessions in the Regulatory Science and Policy track and a town hall meeting on how the AACR is working for you in Washington. Click on each session title below to learn more.

Regulatory Science & Policy Track

NGS Oncopanels: Regulatory Considerations

Chairperson - Reena Philip. U.S. Food and Drug Administration, Silver Spring, MD  

Biosimilars: Biological Science, Regulatory Science, and Clinical Practice

Chairperson - Sara A. Hurvitz. UCLA, Santa Monica, CA

Cancer Genomic Reference Samples - Sequencing Consortium Results and Beyond

Chairperson - Zivana Tezak. FDA, Silver Springs, MD

Has Pandora's Box Been Opened? The Site Agnostic Approval of Pembrolizumab

Chairperson - Steven J. Lemery. U.S. Food and Drug Administration, Silver Spring, MD 

Scientific and Regulatory Challenges in Development of CAR-T Therapy for Solid Tumors

Chairperson - Ke Liu. U.S. Food and Drug Administration, Rockville, MD  

Real World Evidence in Oncology and its Implications

Chairperson - Amy P. Abernethy. Flatiron Health, New York, NY  

Precision Therapy: When Is Better: Up Front or at Relapse?

Chairperson - Gideon Blumenthal. FDA, Silver Spring, MD

Implications of the 2017 FDA Reauthorization Act (FDARA) on Pediatric Cancer Drug Development

Chairperson - Gregory H. Reaman. FDA-CDER, Silver Spring, MD  

Recently Approved Breakthrough Therapies and New Approval Endpoints

Chairperson - Ashley F. Ward. FDA, Silver Spring, MD

Science Policy Track

How the AACR is Working for You in Washington: A Town Hall Meeting on Cancer Research Funding and Science Policy Initiatives

Chairperson - George D. Demetri. Dana-Farber Cancer Inst., Boston, MA  

A Town Hall Discussion of AACR's Priorities in Tobacco Policy

Chairperson - Roy S. Herbst. Yale Cancer Ctr., New Haven, CT  

NCI Director's Address & Fireside Chat with AACR Leaders

Norman E. Sharpless. National Cancer Institute, Bethesda, MD  

Michael A. Caligiuri. City of Hope National Medical Center, Duarte, CA  

Elizabeth M. Jaffee. Johns Hopkins Sidney Kimmel Comp. Cancer Ctr., Baltimore, MD

Access to Health Care in the Era of Biologically Targeted Therapies

Chairperson - Sara A. Hurvitz. UCLA, Santa Monica, CA

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AACR Associate Members Spend a Day on Capitol Hill      

On March 7, 14 Associate Members visited their Senators and Congressional Representatives during the 3rd Annual Early Career Hill Day, organized by the AACR Associate Member Council (AMC) and the Office of Science Policy and Government Affairs. You can still take action today in support of early-career researchers.

Send an Email. Make a Phone Call. Send a Tweet.

Two of the Early Career Hill Day participants, Amanda Herrmann, PhD and Marvin E Langston, PhD, MPH, shared their perspective on their experience of advocating for cancer research and early-career scientists on Capitol Hill.

Amanda Herrmann, PhD

Graduate Research Assistant, Stem Cell Transplant and Cellular Therapy

MD Anderson Cancer Center

Advocacy has been a hobby of mine for several years now, both as a supporter of biomedical research and the practice of medicine. I have been privileged with several opportunities to travel to Washington, D.C. and share my story with those on Capitol Hill, and I look forward to each visit as both an opportunity to share the exciting advances I am making in my research and clinical practice, and as a chance to help organizations such as the AACR further their mission and return the support I receive from them throughout the year.

Advocacy has broadened my network in ways I could have never imagined, and has introduced me to the intricate workings of the federal government funding process. It amazes me how many scientists I interact with back home in the research lab who complain about the federal funding of science, but never make the effort to understand how this process works, or at the very least voice their concerns to those with the power to change it.

Medical research is a relatively uncontroversial issue with great public and bi-partisan support. The NIH has been fortunate to receive acceptable increases in funding over the past few years, but these gradual increases take persistence on the part of scientific advocates.  A great quote I am going to steal from this week’s presentation and incorporate into my own advocacy pep talk is “if you don’t tell them what you want, they (Congress) assume everything is fine as it is”.

The staff I met on the Hill were all genuinely interested in our stories and how NIH funding directly impacts the early career researcher. It’s our job as junior scientists to not only safe-guard the future of our profession but also work to leave it better than we found it. If that means traveling to Washington, D.C. several times a year and explaining to my representatives how the decisions they make on policy directly affect me, my career as a scientist, and my patients, then I will gladly take the time. It’s a worthy, necessary, and FUN endeavor, and I hope to continue this work for many years to come.

Marvin E Langston, PhD, MPH

Postdoctoral Research Scholar, Surgery, Division of Public Health Sciences

Washington University in Saint Louis School of Medicine

Most folks can vividly remember when cancer first impacted their life.  My cancer story started when I was in the 8th grade.  My favorite maternal aunt, a young and vibrant 40-year-old with so much life yet to live, passed away from a particularly aggressive form of recurrent breast cancer.  As a kid, the loss of Aunt Vivian was devastating.  Unfortunately, my story is not unique.  Families all across this nation are dealing with the aftermath of a cancer diagnosis while searching for answers to the questions of why and how this disease chose them, and what to do next. 

My response is simply a variation first shared with me by my very special Aunt Vivian before her death, “baby there’s always hope! Hope that tomorrow we can find the next prevention strategy, early detection tool, or treatment that will impact the lives of many Americans.  Hope that we can train the next generation of cancer researchers to bring together diverse voices, innovative ideas, and multidisciplinary approaches to fuel the next big cancer discovery.  This is why I’m inspired to do my work in cancer prevention, why the NIH continues to fund great science, and why the United States continues to lead the world in breakthroughs for cancer research.

Attending the AACR’s Early Investigator Hill Day helped reaffirm for me that only by working together, across party lines and political affiliation, will we effectively combat cancer.  In my visit to Capitol Hill, I was able to share my cancer-related research and personal family experience.  I was inspired by the support of many champions for cancer research in Congress, most of whom with personal stories to share, either as cancer survivors themselves or family members with cancer.  During these conversations, our message was clear.  Provision of robust, sustained, and predictable research funding for NIH will give us the tools to better prevent and treat cancer.

Thus, we urge all to contact members of Congress and indicate your support for a $2 billion yearly increase for the NIH. As a researcher and advocate, I know that these funds will lead to new cancer research discoveries and continue to deliver hope to families all across the country dealing with this disease.

Send an Email. Make a Phone Call. Send a Tweet.

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Capitol Corner: AACR Interviews Members of Congress      

Every month, the AACR will be interviewing several members of Congress from both sides of the aisle to get their personal story and views on cancer research. This month, we interviewed Senator Susan Collins (R-Maine) and Representative Dwight Evans (D-Pennsylvania).

Senator Susan Collins (R-Maine) 

Can you share with our readers, many of whom are cancer patients, advocates, and researchers, your personal connection to cancer?

Cancer has taken a tremendous toll on far too many Americans and their families.  I don’t think there is a single person in this country who has not been personally affected, in some way, by this disease.  Estimates are that as many as 1.7 million new cases of cancer will be diagnosed this year, including more than 8,700 in my home state of Maine.

I am particularly motivated by the loss to cancer of a young former staffer of mine, Chip Kennett, who learned he had metastatic lung cancer, despite never having smoked.  His wife was pregnant with their second child when Chip received his diagnosis.  I also mourn the passing of a dear friend due to a glioblastoma, the brain cancer that also afflicts my friend and great colleague John McCain.

As Chairman of the Senate Aging Committee, I am acutely aware of the particular challenges that older Americans with cancer face.  The fact is that aging is the single greatest risk factor for developing cancer.  Advancements in treatment, however, also mean that more people are surviving longer and are now aging with cancer.

While we have made great progress, there clearly is much more that must be done to find new and more effective ways of preventing, detecting, and treating cancer. As a member of the Senate Cancer Coalition, I am fully engaged in the fight.

How has the experience of dealing with cancer in your community, both personally and from stories you’ve heard from your constituents, shape your views as a policymaker and a public official?

I was particularly touched last fall by the story of a 9-year-old boy from Maine who was suffering with neuroblastoma, a pediatric cancer.  His name was Jacob, and he was a patient at Barbara Bush Children’s Hospital in Portland – a wonderful facility for children and families dealing with cancer. Fully aware of the seriousness of his disease, but wanting to celebrate one last Christmas, Jacob asked for early Christmas cards.  His touching story went viral – and Jacob received cards from all over the world, from celebrities and citizens who heard his story.  Unfortunately, Jacob passed away in November – but his life should inspire and encourage us – as policymakers- to redouble our efforts to combat this disease.

As a senior member of the Senate Appropriations Committee, as well as the Senate HELP Committee, amd the Chairman of the Senate Special Committee on Aging, you have been a strong supporter of efforts to provide the National Institutes of Health (NIH) with the largest increases in funding in more than a decade. Why do you believe that robust funding increases for NIH are so important at this time? What would you say to your colleagues in the legislative branch who may not understand as you do how important federal investment in medical research is to our nation?

There is simply no investment that promises greater returns for America than our investment in biomedical research.  I have been a leader in the Senate’s successful efforts to increase NIH funding, and as a senior member of the Senate Appropriations Committee, I am proud that last year we approved $36.1 billion, a $2 billion increase, for NIH.

Our investment in the NIH has yielded an unprecedented number of scientific advances that have not only improved health outcomes, but also contribute greatly to our nation’s economy.

Last year, I visited NIH and had the opportunity to discuss the exciting work underway at the National Cancer Institute in immunotherapy.  Immunotherapy is a rapidly advancing field of cancer treatment that boosts a patient’s own immune system fight the disease.  NIH funding is critical as it supports clinical trials around the country that are helping doctors find ways to improve current cancer treatments.

While significant progress is being made, there clearly is much more that must be done in order to win the war on cancer.

How can groups like the AACR and patient advocates best communicate the importance of medical research to the members of Congress?  Do you think we have made progress in terms of raising awareness of the importance of National Institutes of Health (NIH) funding to saving lives and helping the American economy?

The Senate Appropriations Committee has approved a $2 billion increase in NIH funding each year for the past three years.  That’s clearly because of our efforts to demonstrate the value of NIH funding and how it will spur the advancement of treatments, means of prevention, and cures for diseases that affect nearly every American family.  But we cannot take our foot off the accelerator.  AACR and patient advocates can continue to share their personal stories with members of Congress.  These powerful stories of survival show just how critical strong support for biomedical research is.

Can you tell us more about other efforts—legislation and otherwise—that you have worked on or are currently working on in support of better prevention, detection and treatment of cancer?

I am an original cosponsor of S.479, the Removing Barriers to Colorectal Cancer Screening Act of 2017.  This bill would protect seniors from out-of-pocket costs for preventive colonoscopies.  Colorectal cancer is one of the leading causes of cancer deaths, yet it is one of the few cancers that can be completely prevented with proper screening.  We must work to ensure that all Americans have access to these life-saving tests and by removing financial barriers to colonoscopies, we can prevent more cases of colorectal cancer, improve health, and save lives.  I have long been a supporter of the Centers for Disease Control and Prevention’s National Breast and Cervical Health Program, and cosponsored the Breast and Cervical Cancer Treatment Act which became law in 2000.  Currently, I’m also a cosponsor of several other bills such as the Childhood Cancer STAR Act and the Firefighter Cancer Registry Act.

The AACR is the world’s first and largest organization dedicated to every aspect of high quality cancer research. The AACR has 40,000 members across all states, as well as members in over 119 countries. Do you have anything you would like to say to the AACR and our scientists and physicians who have dedicated their careers to making progress against cancer?

Cancer is a devastating and costly disease that causes so much pain and suffering, so much fear and uncertainty, and so much heartbreak.  But The American Association for Cancer Research and your scientists and physicians are literally giving hope to millions of individuals and families, and we owe you a debt of gratitude. 

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Representative Dwight Evans (D-Pennsylvania)  

Can you share with our readers, many of whom are cancer patients, advocates, and researchers, your personal connection to cancer?

Cancer is the most ravenous disease. It touches all of us and has taken the lives of too many of our loved ones. Over the years I have lost family members and dear friends to cancer. My grandmother died of lung cancer, and she is someone who didn’t even smoke; many years ago I lost my friend Claudia Dison to Breast Cancer; and just last year my dear, dear friend who did so much for the City of Philadelphia and the Commonwealth of Pennsylvania Ahmeenah Young died of Cancer, Ahmeenah was the former executive director of the Pennsylvania Convention Center and ran the center for many years before she passed away. Like I said, it’s a ravenous disease that has touched each and every person in our neighborhood in some way. 

How has the experience of dealing with cancer in your community, both personally and from stories you’ve heard from your constituents, shape your views as a policymaker and a public official?

It’s a very personal issue. We are talking about the lives of our family members, friends, neighbors, people we go to church and temple with, people we grew up with, and so many more. Cancer not only takes a toll on individuals who are unfortunate to receive the diagnosis but it also affects families, coworkers, friends, and the community as a whole.  That is why I am working diligently to ensure that funding to prevent this pernicious disease achieves its goals and beyond.

On a personal level it reminds me to be more conscious of my own physical health, to stay even more vigilant. As a member of Congress and for many years when I was a state representative I was always a strong advocate for research and always looking for ways to raise the consciousness on this critical issue. Looking for ways to invest in Cancer research to get us closer to finding a cure. I always say when you hear the “C” word, when you hear the word Cancer it gives you a chilling feeling and you hope that person will be okay. We all know that feeling. We all know how critical early detection is and how it’s so important when we look at this in terms of our policy to allocate the necessary funds to get us that much closer to finding a cure.

In addition, I believe that it is incumbent upon me and other elected officials to assume the role of advocates as well.

What would you say to your colleagues in the legislative branch about the role of federal investment in medical research and cancer research in our nation?

The district I am proud to represent in Congress, is home to a number of world-class medical institutions and federally qualified health centers like: Albert Einstein Medical Center, Chestnut Hill Hospital, the Children’s Hospital of Philadelphia, Hahnemann University Hospital, the Hospital of the University of Pennsylvania, Jefferson Health, Bryn Mawr, Lankenau Medical Center, Mercy Philadelphia Hospital, Penn Presbyterian Medical Center, Roxborough Memorial Hospital, Shriners Hospitals for Children/Philadelphia and Temple University Hospital.

These are health centers that are all on the cutting edge of research and innovation. These are our leaders who are laying the ground work for safer, healthier neighborhoods of our future. I always say we are in the business of ‘doing no harm’ and a way to ‘do no harm’ is to invest in models that work. It is clear that when we put more funding and federal dollars into medical research we increase the ability for people to lead longer healthier lives which in turn allows us to build stronger neighborhoods block by block.

How can groups like the AACR and patient advocates best communicate the importance of medical research to the members of Congress?  Do you think we have made progress in terms of raising awareness of the importance of National Institutes of Health (NIH) funding to saving lives and helping the American economy?

Your organization is dong an exceptional job of relating the stories of constituents like mine and how funding at the federal level can make an immediate impact in their lives by mitigating the effects of cancer.

Also it ensures that funding remains a high-profile in the compendium of problems that Congress deals with on a daily basis.

Can you tell us more about other efforts—legislation and otherwise—that you have worked on or are currently working on in support of better prevention, detection and treatment of cancer?

When I was in the Pennsylvania State Legislature I was on the board of directors of the Fox Chase Cancer Center.  For many years and throughout my nearly 37 years of public service I have worked closely with the Susan G Komen Foundation—I can’t think of a time when I’ve missed one of their Mother’s Day Race for the Cure walks in Philadelphia. This issue is very personal to me. Like I said it touches all of us and I do not take that likely. I am committed to working with whoever I can to keep driving us closer to finding a cure.

The AACR is headquarted in your hometown of Philadelphia. Do you have anything you would like to say to the AACR and our scientists and physicians who have dedicated their careers to making progress against cancer?

Keep doing what you are doing. Keep pushing forward, keep raising the consciousness and dialogue on the important work you are doing and the impact it has on the quality of life in all of our neighborhoods. I appreciate you and all you do and I look forward to working together in our shared goal to build a better tomorrow for future generations.

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Upcoming AACR Regulatory Science and Policy Events and Workshops    

On June 14, the FDA, AACR and Society of Gynecologic Oncology are cosponsoring the Drug Development for Gynecological Malignancies workshop, taking place at the FDA Campus in White Oak, Maryland. Additionally, the FDA and AACR are planning a workshop on non-clinical models for immuno-oncology products, currently scheduled for September 6. 

Sign up here ​​​to receive updates about upcoming Regulatory and Science Policy Workshops, including information about workshop registration and other workshop announcements. Updated workshop information, as well as information on past workshops, are posted on our Regulatory Science & Policy Meetings and Events page.

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Materials from the FDA-AACR-ASTRO Drug-radiotherapy Combinations Workshop Now Available    

The two-day FDA-AACR-ASTRO Clinical Development of Drug-radiotherapy Combinations Workshop brought together regulatory agencies, industry, and academia to discuss the lack of drug development for products intended specifically for use with radiation therapy and to come up with a path forward. Slides and transcripts from the workshop are now available.

Day 1

SESSION I: Preclinical Considerations

SESSION II: Clinical Considerations

Day 2

SESSION III: Immunotherapy

SESSION IV: Other Targeted Therapies

See the full agenda. Read the speaker bios. Download the slides: Day 1, Day 2. Read the transcript. Please note that some speakers have elected to have some or all of their slides withheld.

Audio from both days of the workshop will be provided in the coming weeks. When available, the audio will be posted on the workshop page.

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Save the Date: Rally for Medical Research 2018    

The sixth annual Rally for Medical Research will be held Sept. 12-13, 2018, in Washington, D.C. For those who cannot participate in person, the online Rally National Day of Action will take place Sept. 13.

Stay up-to-date on registration information by visiting the Rally website, Facebook, and Twitter pages.

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Join the AACR Cancer Action Alliance    

Launched in January 2012, the alliance leverages the strength of AACR members and interested nonmembers to build nationwide public and congressional support for cancer research and scientific progress. Alliance members are kept regularly informed about the news and events that affect cancer research and are alerted to opportunities to contact Congress or participate in other forms of outreach. Alliance members receive action alerts, timely legislative updates and other resources to facilitate their efforts.

With the Trump administration proposing deep cuts to the NIH budget, it is imperative that everyone who cares about defeating cancer speak out now and urge lawmakers not to turn their backs on the incredible scientific opportunities that are before us. Senators and representatives need to hear directly from residents in their district and/or state to understand what is at stake for their constituency, in terms of economics, health and competitiveness, if cancer research is not made a priority.

It is free and simple to join and your contact information will be used only to contact you about the AACR’s advocacy efforts and opportunities to take action.

Sign up here to receive action alerts and learn about opportunities to join other scientists, patients, survivors, and concerned citizens in calling on Congress to provide critical funding increases for the lifesaving cancer and biomedical research supported by NIH and NCI.

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Share Your Cancer Research or Advocacy Story    

We’re looking for inspiring stories from researchers and advocates about why they became interested in cancer research or advocacy and how they work in their own way on behalf of cancer patients and survivors. You can submit your story starting today for a chance to be featured on our Take Action website and future editions of the Cancer Policy Monitor.

You can be as creative as you like. Write your story in your own words, make an online mini-site, create a video, or submit a digital collage. Any way you think would best tell your story is acceptable. There is no deadline to submit your story. We will be accepting stories throughout the year. Submit your story and/or links​.

Ken Dutton-Regester, a melanoma researcher who serves as the chairperson of the AACR Associate Member Council, the leadership body of the associate members of the AACR, shared the story of his work. Ivy Elkins, a lung cancer advocate in the AACR Scientist↔Survivor Program, shared the story of how she became a lung cancer advocate. Kerie Berkowitz shared the story of how she survived ovarian cancer and became an advocate for survivorship issues.

Read more stories​ and submit yours today!

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