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Cancer Policy Monitor - Dec. 10, 2019


Distinguished Fellows of the AACR Academy Send Letter Urging Congress to Provide Significant Boost for NIH

Distinguished Fellows of the AACR Academy are spearheading a letter to congressional leaders, urging them to complete the appropriations process in a timely manner and to provide robust funding increases for the National Institutes of Health and the National Cancer Institute for fiscal year 2020.

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Appropriations Update from Capitol Hill

Narrowly avoiding a government shutdown, Congress has passed a second continuing resolution (CR) extending funding for government programs at fiscal year (FY) 2019 levels out to Dec. 20. The CR was signed by President Trump hours before the first CR’s Nov. 21 deadline. With top-line numbers finally set for each of the 12 funding bills, congressional leaders hope to finalize the appropriations process for FY 2020 before the end of the calendar year.

On Nov. 23, Appropriations Chairs Nita Lowey (D-NY) and Richard Shelby (R-AL) of the House of Representatives and the Senate, respectively, reached a long-awaited agreement on funding levels for each of the 12 appropriations bills, known as 302(b)s. Appropriations subcommittees for each bill will now decide how those numbers will be divvied up among the federal agencies and programs under their jurisdiction.

So far, only four bills have been passed individually by both the House and the Senate. Having established 302(b)s may hasten the two chambers’ progress in reaching a final deal on those four bills and in completing those remaining, like the Labor-HHS-Education bill which funds the National Institutes of Health (NIH). Appropriations leaders have been supportive of increased NIH funding. The House’s Labor-HHS-Education bill, passed during the summer, includes a $2 billion increase to NIH funding. Though the Senate has not yet passed their Labor-HHS-Education bill, Chairman Roy Blunt (R-MO) of the Senate’s Labor-HHS-Education subcommittee has indicated his support for a $3 billion increase.

Looking ahead, progress on the appropriations process may be disrupted by partisan disagreements over family planning-related provisions and funding for the president’s proposed border wall. Timely completion of appropriations is also threatened by the House’s impeachment inquiry and potential Senate trial, which serve as major distractions for legislators. However, congressional leaders have expressed hope for completing the process before the close of 2019.

“Failing to secure funding for the federal government before the end of the year is not an option,” said Senate Majority Leader Mitch McConnell (R-KY).

Although CRs prevent a government shutdown, they disrupt the enterprise of medical research by introducing uncertainty over funding levels. The AACR, along with the broader medical research advocacy community, continues to urge Congress to include a robust increase for the NIH in final FY 2020 appropriations, and to complete this process in an expedient manner.

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AACR Supports Hahn Nomination for FDA Commissioner

On Dec. 3, the Senate HELP Committee advanced the nomination of Stephen M. Hahn, MD, for U.S. Food and Drug Administration Commissioner. The committee voted in favor of Hahn, 18 to five. The AACR reiterated their strong support for Hahn’s nomination as commissioner with a letter to the full committee. No date has been set for a full Senate floor vote to confirm the nomination.

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U.S. Food and Drug Administration Office of Hematology and Oncology Products Reorganizes

On Nov. 5, the U.S. Food and Drug Administration (FDA) announced that the Office of Hematology and Oncology Products (OHOP), which is responsible for reviewing cancer therapies, has been reorganized into the Office of Oncologic Diseases (OOD). Read more about this reorganization and what it means for oncology drug review on the AACR Cancer Research Catalyst.

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Early Career Scientists Partner with Patients

  • Hillary Stires PhD, Christine Hodgdon, and Kimberly Richardson

    Part two of a two-part blog.  This post is part of a special series on patient partnerships in research and policy.

    The goal of cancer research is to improve the lives of those who have been or may be diagnosed with cancer and includes discovering new therapies that keeps cancer growth and spreading at bay, developing strategies to reduce the risk of cancer development, and understanding how a cancer diagnosis and cancer therapies influence survivorship. At the core of this goal is the person; however, many research scientists do not often interact with survivors (those who have ever been diagnosed with cancer). We are research scientists and cancer survivors who have found value in working with one another to improve research, to keep research patient-centric, and to ensure we are focusing on the most pressing challenges cancer survivors face. By working together, we have not only seen research improve, but also our individual understandings of cancer. As an added benefit, we have gained a satisfaction from building relationships with one another. We believe that all research scientists should develop these relationships, but that the best place to start is early in a scientist's career when they are training as a graduate student, postdoc, or clinical fellow.  


Part two of this two-part post shares the perspectives of cancer survivors and Scientist↔Survivor patient advocates, Christine Hodgdon and Kimberly Richardson.

Christine is a veracious advocate in the metastatic breast cancer community. On top of living with metastatic breast cancer, Christine oversees the website the Storm Riders Network. Kimberly Richardson is a granulosa cell tumor (ovarian cancer) survivor. She's extremely dedicated to patient engagement in research and plans to initiate a CTAP at UIC in 2020

  • Christine Hodgdon

The CTAP at Georgetown was my first training experience with researchers and I honestly thought it would be similar to other trainings I have attended where the researchers present their work, patient advocates or community members ask questions, and the day ends. This training however, was completely different and patient-centered; the patients were the experts, and the trainees questioned us about how to successfully incorporate patient advocates early in their research endeavors.

How and where do we meet patient advocates? What are appropriate expectations for patient advocates who volunteer their time? How do we know if the patient-researcher team will be compatible?

I was delighted to answer these questions and thrilled that the Georgetown Lombardi Comprehensive Cancer Center had already set a precedent of making the patient a key player and collaborator on the research team. Patient advocates can guide and enhance the quality of the research being conducted by ensuring outcomes will actually benefit the target audience, patients.

I found myself perusing the posters at the CTAP training because the research is often new and innovative, and the presenters are very approachable and eager to answer questions. At the annual American Society for Clinical Oncology (ASCO) meeting this year, I had the same opportunity to peruse posters, but this time, I was accompanied by a cancer researcher from the Broad Institute. Having a science expert by my side to answer my questions as I tried to grasp complex scientific concepts significantly enhanced my poster session experience. She in turn, learned about which drugs were specific to breast cancer, their "reputation" in the patient community in terms of how well patients tolerated the side effects, and which research labs were well known and had made exciting advances in breast cancer research.

My experiences at CTAP, and other conferences inspired me to develop the GRASP program, Guiding Researchers and Advocates to Scientific Partnerships, which will be piloted at this year's San Antonio Breast Cancer Symposium (SABCS19). This initiative will bring together patient advocates and scientists for a poster walk-through and personalized discussion about pre-identified research posters. The goal of the program is to 1) enhance the learning experience for patient advocates by having a science expert frame the scientific context, explain the underlying science, and assist in interpreting graphs and figures; and 2) provide scientists with an opportunity to interact more directly with patient advocates, fostering a sense of urgency and purpose to their research as well as allowing them to improve their communication skills for a broader audience. This initiative seeks to bridge the communication divide between patients and scientists by providing a forum by which patients can feel uninhibited to ask questions that help them better understand the science behind the research, and scientists can learn how to communicate the importance of their research in plain language and hear about research priorities from a patient perspective. The poster sessions are the perfect venue for this learning collaboration because they are less formal than the plenary sessions and can provide a more personalized and interactive experience.

The GRASP program, along with CTAP, and others that bring patients and researchers together, will help address the major unmet need for direct interaction, discussion, and collaboration between researchers and patients. Both parties have so much to learn from each other and are working towards the same goal to discover cancer treatments that improve both the quality of life and survival for patients.

  • Kimberly Richardson

The idea of advocates and researchers working together began for me during poster sessions at AACR/SSP. I tried to meet as many junior researchers working on ovarian cancer as I could. I realized how much they wanted to share their research with me once they knew I had been an ovarian cancer patient. When it was my turn to present my poster, many of them came by to hear my story and to learn why I think ovarian cancer advocacy is important, especially for rare types. I came back home energized about ways to work with researchers. I worked with a few advocates on research training webinars for the Ovarian Cancer Research Alliance (OCRA), but things changed when I took a role on a University of Illinois at Chicago (UIC) grant focused on working with patient advocates at its cancer center. I started meeting senior researchers working on all cancer types and I asked what conditions would have to be in place for researchers to engage patient advocates. Hands down, every time the response was "tell me when you want to come to my lab!"

I organized my first lab visit in the Cancer Biology Department with Dr. Jan Kitajewski at UIC. Four researchers and eight cancer patient advocates discussed breast cancer research for two hours and no one wanted to leave. As we were all saying our goodbyes, a post doc in the lab pulled me to the side and asked how could we continue this relationship. I was overjoyed! Since that visit, I have met with the postdocs bi-weekly to develop webinars on research design so advocates can better assist with grant reviews.

During Ovarian Cancer Awareness Month, I organized a visit for ovarian cancer advocates with Dr. Joanna Burdette and her research team and it became clear that there was a desire for advocates to learn more from researchers. During awareness month, I met more oncologists and researchers from various research centers and I started discussing the need for ovarian cancer advocates to understand the current research, why it's difficult for researchers to develop an early detection procedure and why it is so important for advocates to hear from researchers and the work that they are doing. We need hope.

Gynecological oncologists and researchers are working with me to develop a workshop comprising the five major teaching hospitals in the city of Chicago – Northwestern, NorthShore, University of Chicago, Rush and the University of Illinois at Chicago to adapt the Georgetown CTAP model.  Our goal is to do four a year, beginning with those involved with ovarian cancer, which will allow each teaching hospital to host a workshop. In January 2020, the University of Chicago will lead our first CTAP workshop, hosted by Dr. Nita Lee. Our next advocate/researcher workshop cancer will be hosted at the University of Illinois at Chicago in March with a focus on breast cancer.

I learned that researchers are eager to talk about their research to lay people, but we have to extend the invitation and make the connection. In my experience, every researcher I have met has been friendly and extremely supportive of my vision for meaningful research advocacy. Be brave and ask!

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Patient Advocate Programs at the AACR Annual Meeting 2020

Cancer survivors and advocates are important members of the research community and valuable participants in the AACR Annual Meeting. There are a number of programs available to patient advocates at the upcoming 2020 Annual Meeting in San Diego, California. Learn more

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Advocates for Medical Research Take Their Message to Capitol Hill

Nicole Robinson, an alumna of the AACR Scientist↔Survivor Program, and Tomma Hargraves, whose story was featured in the 2019 AACR Cancer Progress Report, shared their experiences from the Rally for Medical Research in a new blog post for Cancer Research Catalyst. Read their story.

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Oncology Approval Recap

In November, the U.S. Food and Drug Administration granted one accelerated approval and one expanded indication to oncology therapies:

  • Zanubrutinib was granted accelerated approval for adult patients with mantle cell lymphoma (MCL) who have received at least one prior therapy. This approval is the first approval of a Chinese-developed cancer drug in the United States.
  • Acalabrutinib was approved for adults with chronic lymphocytic leukemia (CLL) or small lymphocytic lymphoma (SLL). The was the second review conducted under the Oncology Center of Excellence's Project Orbis.

To learn more about the approval of other cancer therapies, you can find more information on the FDA's website, and an AACR journal, Clinical Cancer Research, regularly publishes FDA approval summaries.

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