Senior Manager, Federal Affairs, Sarah Millberg (far left, blue shirt) and LLS Federal Affairs team.
Sarah Milberg is a member of the Federal Affairs team in LLS’s Office of Public Policy, working to advance LLS’s policy agenda. We asked Sarah to talk about our most recent big win—a $2 billion funding increase for the National Institutes of Health (NIH), plus a $10 million increase in the program in the Department of Defense’s (DoD) cancer research budget that prioritizes blood cancer research—and its significance for LLS and the patients to whom we dedicate our work.
Q: Would you tell us a bit about your background and your role with LLS?
A: I graduated with a double major in political science and psychology, and went on to get a Master’s degree in public policy. As a member of LLS’s Federal Affairs team, my main job is to translate LLS’s mission into federal policies that speed cures for blood cancer and improve access to care. I work on aspects of our policy goals that increase research funding at the federal level. I also head up the legislative work for policies affecting pediatric cancer research and survivorship issues, and oral parity legislation.
Q: What brought you to LLS? Where were you before this?
A: After my sophomore year of college, I interned and later worked for a member of Congress who was particularly passionate about healthcare policy. I loved helping with people’s lives, working to make healthcare more accessible, affordable, and easier to understand. After working on Capitol Hill, I worked for another patient advocacy organization. My grandfather had multiple myeloma, so work for LLS gave me an opportunity to blend what I’d learned as a professional patient advocate and apply it to what was close to home.
Q: How will LLS’s latest big win help us advance our mission of curing blood cancer?
A: The more investments that are made in blood cancer research, the more researchers are attracted to the field, and the more research dollars there are to fund grant applications. For example, increased funding for the DoD’s medical research program will allow it to continue exploring and finding cures for blood cancers that have a connection to military service.
Q: How will blood cancer patients benefit from this win?
A: These wins will lead to more research, which ultimately will lead to more innovative treatments.
Q: What kind of lobbying strategies make big wins happen?
A: We stay in constant communication with other members of the cancer community, pound the pavement on Capitol Hill, and bring congressional offices face to face with cancer advocates. Patients, survivors, and caregivers are the best messengers for making the case for increases in research funding. Their stories help lawmakers understand why research is so important. LLS staff and our advocates are very persistent!
Q: What is the Childhood Cancer STAR Act (H.R. 820/S. 292)?
A: The STAR Act is the most comprehensive childhood cancer bill ever passed by Congress, designed to advance pediatric cancer research and treatments, and provide enhanced resources for survivors.
Q: How will our win serve the STAR Act? What kind of research will it support?
A: By allowing NIH to fully implement the STAR Act, this win will create new funding opportunities for pediatric cancer research. It will also support the creation of centralized research resources, including a central biorepository for pediatric cancer that will give researchers access to tissue samples and data for their studies. And, it will support efforts to understand how cancer survivors interact with the healthcare system, and how their psychosocial needs are met during and after treatment.
Q: What is your roll with the Alliance for Childhood Cancer, and what do you hope accomplish in this role? What’s already been accomplished?
A: LLS co-chairs the Policy Committee of the Alliance for Childhood Cancer, and I serve as LLS’s representative in fulfilling that role. The Policy Committee sets the Alliance’s legislative agenda. We succeeded in getting the STAR Act passed and funded this past year, and we will continue to focus on ensuring that STAR is fully implemented and funded in the years to come. With this big win, we can now explore other policy changes that will help accelerate pediatric cancer research, improve access to care, and address the needs of childhood cancer survivors.
Q: What about this work inspires you?
A: Every year we have the opportunity to make our case for increased research funding. Research funding is incredibly bipartisan – everyone can appreciate the need for curing cancer. It’s a great unifier. Also, the research that comes out of NIH and DoD is really interesting! It’s wonderful to see breakthroughs happen even if they’re small. One grant could lead to the next big thing. Patients inspire me too. Their stories are the strongest tools in our arsenal. I wouldn’t be able to push for these wins if I didn’t have the backing of over 100,000 LLS advocate volunteers behind me.
Q: What are LLS’s insurance coverage principles, and what are you and the LLS Office of Public Policy doing to advance them?
A: The LLS Coverage Principles define the core tenets of meaningful insurance coverage—essentially, the policy protections that must be in place to ensure that cancer patients can use their insurance to access their care when they need it. The Coverage Principles are: access to care, quality of insurance, affordability of care, and stability of coverage. We use the principles as a rubric for assessing healthcare proposals coming out of Congress, the Administration, and state capitals, to ensure that healthcare policies will serve the best interests of cancer patients.
Q: What’s next on your LLS policy to-do list?
A: We’re planning for a busy end to this Congress and a just-as-busy beginning for the new Congress that will be sworn-in in January. Changes in Congress and any new proposals from the Administration will play a big role in what we focus on at the end of this year and the start of next calendar year. We’re refining our strategies to advance all our policy priorities, including reducing patients’ out-of-pocket costs, lowering the cost of quality health insurance, protecting access to vital programs like Medicaid, making the healthcare system more sustainable, and increasing federal investments in research.
Left to right; Sarah Milberg, LLS Senior Manager, Federal Affairs, Corinne Alberts, LLS Office of Public Policy, Mark Rubin, LLS Advocate, Phyllis Osterman, LLS Advocate, Rep. Brian Higgins (D-NY-26) and Daniel Robertson, LLS Advocate.
Learn more about The Leukemia & Lymphoma Society’s Office of Public Policy here.
More than 6,000 school-age children are affected by blood cancers each year, and most children with cancer will attend school at least some of the time during and after their treatment. Because school is a place for learning and fun, children benefit from returning as soon as medically possible. Yet, returning to school can be a very tough adjustment for young survivors. What will other kids think? Did I miss any fun activities? Do I look different? These are just some of the many questions cancer patients have when the time comes for them to return back to school and their regular routine.
To help ease their transition back to school after treatment, LLS and its top national partner, Burlington, have joined forces to surprise more than 100 brave cancer survivors across the country with an exclusive back-to-school shopping-spree for a new head-to-toe look, to give them the extra confidence they need to return to class.
Here are some of the heroic stories of young cancer survivors who LLS and Burlington have brought smiles and styles to…
Bella, 2nd Grader
Albany, New York
When seven-year-old Bella returned to school this fall, she was most excited to see her friends. When she was just four years old, what began as ear infections and strep throat that wouldn’t go away, led to severe bruising and a leukemia diagnosis. She would have multiple hospital visits over two and a half years and 700 infusions of chemotherapy. Bella had to miss most of the first grade due to treatment.
“It was hard for her last year; making friends, being accepted and dealing with all the questions about her illness,” her mom, Nicole Caruso, said. “This year, as a 2nd grader she has a very positive outlook and doesn’t seem to think about being sick so much anymore.”
Bella loves gymnastics and the color pink, which was reflected in her Burlington shopping cart.
Amir, 5th Grader
Pittsburgh, Pennsylvania
Ten-year-old leukemia survivor, Amir carried bags worth of clothes and accessories out of his local Burlington store after becoming one of the children picked nationwide to get a surprise shopping spree.
He just returned to school after a year in the hospital to undergo intense treatment. He had to be isolated at home due to his suppressed immune system.
“We know that Amir was really most upset not about having cancer, but missing school,” said Tina Thompson, executive director for the LLS Western PA Chapter.
Amir piled his cart with clothing, a watch and a bag of caramel corn. He said he was excited for the surprise. He will continue to be in treatment for another year and a half, but his immune system is improved enough that he no longer has to be isolated.
Sophia, 1st Grader
Daytona Beach, Florida
Sophia was diagnosed with acute lymphoblastic leukemia in 2017, about a month after her fifth birthday. She is currently in long term maintenance, and undergoing chemotherapy treatment until October 2019. She was just cleared by her doctors to go back to school this fall.
Sophia is now an active student in the first grade and loves shopping – so running through the aisles at Burlington and picking out whatever she wanted was right up her alley.
“She’s a strong fighter,” her mother, Marlene Costa, said. “The first year of treatment was exhausting for her but she was so excited to go to school. It’s part of that return to normalcy that she craves, and we’re very happy she’s healthy enough now to learn and to play outside and to make new friends.”
For 17 years, Burlington Stores has partnered with The Leukemia & Lymphoma Society (LLS), funding research and lifesaving treatments. Together, they have saved lives and helped bring smiles to those touched by blood cancers, with more than $32 million raised to date.
Customers shopping at any Burlington store now through December 1 can donate at checkout to benefit LLS, helping to find cures for blood cancers. For more information visit Burlington.com or LLS.org.
The Nobel Prize in Physiology or Medicine has been awarded today to two scientists whose groundbreaking work led to the development of a class of immunotherapies called checkpoint inhibitors that work by releasing the brakes on the immune system.
James P. Allison, Ph.D., chair of department of immunology at MD Anderson Cancer Center in Houston and director of the Cancer Research Institute Scientific Advisory Council, and Tasuku Honjo, M.D., Ph.D., of Kyoto University School of Medicine for Advanced Study and a professor in the department of immunology and genomic medicine at Kyoto University in Japan, shared the honor.
These game changing therapies, now approved for multiple types of cancers, work by blocking certain proteins that suppress the immune system and allow the cancer cells to hide from the body’s T cells. By blocking the ability of these proteins on the T cells to bind to other proteins on the surface of tumor cells, the T cells are unleashed to track down and kill the cancer cells.
The first immune checkpoint inhibitor was FDA approved in 2011 to treat metastatic melanoma. This approval was followed by others to treat solid tumors such as metastatic non-small-cell lung cancer, squamous cell carcinoma, head and neck cancers, bladder cancer, kidney cancer, urinary tract cancer and others. The first immune checkpoint inhibitor for patients with a blood cancer was approved in 2016 for treatment of Hodgkin lymphoma (HL).
LLS supported key laboratory work to indicate that one of the checkpoint inhibitors might work well in this disease…and it did! There are now two approved checkpoint inhibitors to treat HL, one of which is also approved to treat a rare type of non-Hodgkin lymphoma. The Leukemia & Lymphoma Society (LLS) has, and continues to fund multiple research projects pursuing further understanding of the utility of checkpoint inhibitors in several types of blood cancers.
Allison’s discoveries led to the development of the first FDA-approved checkpoint immunotherapy, the anti-CTLA-4 antibody known as ipilimumab (Yervoy®).
Honjo discovered another immune blocking protein called programmed cell death protein-1 (PD-1). FDA-approved therapies that target PD-1 Include pembrolizumab (Keytruda®) and nivolumab (Opdivo®).
While this particular approach to immunotherapy got its start in the solid tumors, the concept of boosting and deploying the immune system to fight cancer has its roots in blood cancer research, beginning with bone marrow cell transplantation in the 1950s. LLS has supported two other foundational concepts in immunotherapy. The first one is the use of antibodies that bind to and disable specific proteins on the surface of the cancer cells, thus allowing the immune system’s cells to swarm and kill the cancer cells.
These immune checkpoint inhibitors in today’s news are a type of antibody therapy. The first antibody therapy approved for use in cancers was rituximab (Rituxan ®), approved in 1997 to treat non-Hodgkin lymphoma, and later for chronic lymphocytic leukemia (CLL) and autoimmune diseases such as rheumatoid arthritis. This was quickly followed by the approval of trastuzumab (Herceptin ®) in 1998 by the FDA. Since then, dozens others have followed for multiple types of cancers.
The second effort is to genetically engineer T cells to selectively identify tumor cells and become super-activated upon binding to the tumor cells. This treatment, chimeric antigen receptor (CAR) T cell therapy, was developed for blood cancers over the past 20 years and is now approved to treat acute lymphoblastic leukemia and some types of large B-cell non-Hodgkin lymphoma.
Immunotherapy has become a mainstay therapy to treat blood cancers and other cancers. We salute Drs. Allison and Honjo for their contribution to science and medicine. Your support will enable LLS to maximize the impact of this work to its fullest in this rapidly emerging field of discovery.
Bella, 2nd Grader
Amir, 5th Grader
Sophia, 1st Grader