Professionally, I am an architect. I have designed housing, theaters, libraries, a police station house, social service facilities, cultural centers and museums.
I am also a builder of communities, working with local organizations to help alleviate poverty, violence, and social disenfranchisement.
You could say that I’ve spent my life building spaces where people could grow. I never imagined, however, that I would someday have to rebuild my own.
In February 2015, after experiencing months of excruciating and debilitating back pain that doctors mistakenly attributed to deteriorating lower lumbar discs, I had an MRI that revealed multiple vertebral compressed fractures. My new doctor, suspecting multiple myeloma, immediately ordered blood work.
While I awaited the results over several days, my health declined rapidly and I landed in the hospital intensive care unit, where I spent the next three weeks receiving treatment for anemia, dehydration, a-fibrillation, and kidney and liver failure. While I was there, I also received a diagnosis: multiple myeloma.
Although my hospitalization and subsequent participation in a clinical trial stabilized me, I faced severe physical limitations. The multiple compressed vertebral fractures left me with a deformed spine, atrophied muscles, an inability to perform basic functions and a body wracked with pain. Despite tremendous support from friends, community and my partner, Joan, I was not prepared for the uncertainty that lay ahead.
Joan tried mightily to comfort me. She had a hospital bed delivered to our home, and asked one night to lie behind me. At first, I could not bear the thought of her touching my back. After all, just the shower or clothes against my skin hurt. But eventually I agreed, deeply touched by her loving persistence.
Nevertheless, I felt lost and paralyzed. I had no schedule or daily structure. I was in pain, unsteady on my feet and scared. I spent hours doing basic things that once took minutes — using the bathroom, washing, getting in and out of bed, dressing, traveling to the hospital for chemotherapy and lab work. How would I rebuild my life?
There is a narrative of loss, tragedy and death that stigmatizes people with cancer. I noticed colleagues, friends, and even family responding to me as if I had a death sentence. At work, no one asked what tasks I could and could not handle, or how they could make reasonable accommodations. Instead, they terminated me. This is just one reason why many people conceal their cancer. I did the opposite: I embraced mine.
I created a schedule for cooking, eating, having physical and occupational therapy, and working with the health care professionals who made home visits. I regularly invited friends to accompany me to appointments for chemotherapy and lab work. Although I needed to rest during the day, I began — and continue to — exercise vigilantly to slow down further deterioration. I also searched for support groups and people with the same diagnosis. The Leukemia & Lymphoma Society has been especially helpful in providing medical and financial resource information.
Three years after my diagnosis and now in partial remission, I have come to accept my cancer and my new self. I can't live my life as before, and yet, where some doors have closed, others have opened. I am more emotionally open and available to friends. I feel deep joy and gratitude for their and my healthcare providers’ support and love. I am more curious about what is happening around me. And, I am open to the unknown. I don’t feel anxious about the uncertainty ahead but excited about the promise of the future. My concerns, insecurities, anxieties, depression, anger, and joy are not going away. They are the material with which I am rebuilding my life.
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.
I have always been a builder.
Bella, 2nd Grader
Amir, 5th Grader
Sophia, 1st Grader