Transforming the Field of Survivorship Research

Recently, Lymphoma Research Foundation (LRF) CEO Meghan Gutierrez sat down with Congresswoman Debbie Wasserman Schultz, the author of groundbreaking legislation that would transform the field of survivorship research and increase access to survivorship-related healthcare and services. They discussed the bi-partisan Comprehensive Cancer Survivorship Act, her motivation to author the legislation, and the needs of cancer survivors.

You shared with me that drafting this legislation was a personal, as well as a professional, journey for you. Can you share your personal story and motivation for drafting the Comprehensive Cancer survivorship Act?

My story began 15 years ago with the harrowing words, “you have cancer.” I was only 41 when I was diagnosed with breast cancer, and like so many who heard those dreaded words, I wasn’t sure what was next, or what I was about to go through. Fighting through this experience helped me translate my diagnosis and my story into something greater.

Throughout my personal battle against cancer, I came to realize that there are hundreds of considerations aside from appointments, tests, and treatment. My world was turned upside down and I had to think about what this would mean for my general health, my well-being, my family, my job, my daily routines, and so much more. These questions and deliberations turned my attention toward survivorship, thinking about how to best help cancer patients navigate through their life experiences and challenges as a result of this diagnosis.

I set out to create legislation that addressed survivorship – the entirety of a person’s journey navigating their cancer diagnosis through the end of life, and every aspect along that continuum. I poured my own experiences into the legislation, remembering the challenges and shortcomings I faced going from diagnosis to treatment and surgeries to primary care. I also learned and integrated the same from patients, their families, doctors, and advocates like you what survivors faced daily – identifying what was missing or incomplete, and what we can do better, together.

The underlying motivation behind the Comprehensive Cancer Survivorship Act is to acknowledge and channel
these difficult realities and existing gaps into meaningful solutions. This legislation will set standards and create
new programs to ensure the best and most seamless experience for survivors, their families, and caregivers,
throughout their survivorship journey, from diagnosis to end of life. The goal of this bill is to ensure survivors can choose their own path, providing them agency and autonomy over their personal health experiences and decisions, all through their difficult journey. For every survivor, the journey will have different needs and challenges, and anyone who begins this life-and-death struggle and eventually comes out the other side cannot be left alone in the wilderness to fend for themselves.

One of the reasons the Lymphoma Research Foundation has been very engaged in the development of this legislation is the fact that it addresses the entire continuum of survivorship – from the point of diagnosis through post-treatment survivorship. Each phase is unique to someone facing a lymphoma/CLL diagnosis, and it impacts every facet of your life, long after the diagnosis is made. Why do you think such a comprehensive policy effort like this one has not been introduced before now?

Every year, cancer diagnoses increase, but death rates have been decreasing. Survivors are living longer because of the many vital tools we have to beat this disease, from early detection to research to clinical trials to treatments and so much more innovation on the horizon, like mRNA vaccines and CAR T-cell therapy. As the number of survivors increases, and as they live longer lives in their fight against cancer, more attention must be paid to the gaps they face along their survivorship continuum. We need to be mindful of survivors’ general well-being, their social determinants of health, their financial health, and their particular needs, such as food insecurity, housing, transportation, labor, access to broadband and telehealth, childcare, and more.

CDC and NIH, like so many great organizations and cancer centers across the U.S., do engage heavily in
survivorship research, care, and resources, but with such a deadly, impactful disease, more work and dedication will always be needed. We need to develop desperately needed standards to improve the overall patient-centered quality of care and address the non-medical needs of cancer survivors and their families.

I wish I had a clear answer to why it has not been undertaken through federal policy, but make no mistake, this is a daunting task. I can also tell you this: it will be a central focus of my legislative agenda moving forward.

The new payment models proposed in this bill and the way in which it attempts to expand patient access to care is a critical piece; we, unfortunately, know that in today’s healthcare system, too few patients have access to long-term care and support services that they need. Can you describe the type of care that you wish to make available to survivors?

The goal of this bill is to make the care and support survivors need available throughout their entire survivorship continuum, from the point of diagnosis, through active treatment, to the transition to primary care and the possibility of recurrence, through end-of-life, setting the standards of care all survivors need and deserve. This is an all-of-the-above effort.

Survivorship begins at diagnosis, and the first consideration thereafter is care planning. The bill specifically provides coverage and payment of cancer care planning and coordination services, standardizes these processes, and consolidates treatments to guide survivorship monitoring and follow-up care through transition to primary care.

In addition, throughout this journey, with so many unanswered questions, survivors need proper and
comprehensive navigation, and the resources necessary to carry out their lives. To that end, this bill also develops
effective and comprehensive navigation services that emphasize the survivorship continuum, such as follow-up care, health disparities, and social determinants, like food insecurity, housing, transportation, labor, broadband and telehealth access, and childcare. It also pursues improved quality standards and considers situations related to leaving or returning to the workforce, infertility, or resources in the community for general well-being. Cancer doesn’t stop for real-life realities like securing daycare and time off, or an inability to get to appointments or no money for food or utilities. We need to face that reality. This legislation does that.

Finally, concerning payment, the bill will develop an alternative payment model to ensure a coordinated approach to survivorship care across an episode of care. To institute a workable payment structure, we need to better understand everything from triggering events, length of participation; shared decision-making; necessary services coordination of care; and social determinants of care. This bill does that too.

Fertility preservation is a significant issue for adolescent and young adult lymphoma patients and survivors. Does this bill address this specific aspect of cancer survivorship?

My husband and I faced infertility issues when I was 29, about a decade before I learned of my breast cancer diagnosis. Thanks to in-vitro fertilization, I gave birth to twins and subsequently a third child without assistance. Today, we have three healthy, young adults.

Not everyone has the same good fortune to access or ability to afford fertility preservation, but even more devastating is that we do not always catch cancer early enough to preserve fertility in time to reconcile this potential loss. (This leads me to a quick segue to emphasize the importance of staying on top of your preventive care. Please get screened when eligible!) Scientific advancements in fertility preservation continue exponentially, and this bill couples that reality with this ultra-real difficulty that survivors face.

In the bill, we included a section that amends the Social Security Act to ensure Medicaid coverage of fertility preservation services under Medicaid for individuals diagnosed with cancer when it may lead to iatrogenic infertility.

When people call the LRF Helpline, most often they are seeking guidance regarding financial toxicity, healthcare coverage, employment challenges, and even disruption to their education. Can you describe the ways in which this legislation could impact this aspect of a survivor’s experience?

Once a survivor learns they have cancer, the work begins. The information is foreign, nerve-wracking, and complex – absorbing everything while fighting for your life is an impossible task. So many survivors have family and friends by their side, but the emotional toll it takes on their loved ones muddies the waters for the cancer patient and everyone around them. It creates so many new, unexpected challenges.

As I mentioned previously, learning from my own experiences and hearing countless stories from survivors, cancer centers, researchers, and providers – those facing this disease from every angle – I made it my priority to ensure no stones were left unturned. A big part of that is proper navigation – a robust guidance platform that can hold someone’s hand through this journey as survivors face the real world with such a heavy weight on their shoulders.

Survivors need to think about follow-ups, tests, nutrition, work, childcare, financials, and the list goes on and on. The bill will review existing navigation programs to determine effectiveness, types of services needed, training needs, federal financing, patient involvement, alternative payment, and existing community resources. And then creates a demonstration program through grants to offer navigation services that emphasize these elements. In addition, it directly tackles workforce complications by establishing workforce assistance grants to help survivors, their families, and caregivers when faced with a range of workforce challenges. These grants will prioritize assistance and education pertaining to transportation, childcare, nutrition, and finances, such as accessing existing programs and financial benefits and engaging in training assistance.

What can cancer survivors do to learn more about the Comprehensive Cancer Survivorship Act?

I will continue to do everything I can to amplify the bill, which we plan to reintroduce early this year. In addition, you can visit my website, wassermanschultz.house.gov, to learn more – there is a tab specifically for this bill at the top of my homepage. You also can read about it at lymphoma.org. Several of the supporting organizations have written about the bill and posted about it. I implore everyone reading this to speak to survivors closest to them and be a resource to them, research survivorship and familiarize yourself with the very unique challenges people face, and use your voices to uplift survivors throughout their difficult journeys.

Is there anything else you would like to share with the lymphoma community?

In the 118th Congress, as I mentioned previously, I will make passage of this bill a top priority. I am eternally grateful to my colleagues, Sen. Klobuchar, Sen. Cardin, Rep. Fitzpatrick, and Rep. DeSaulnier, for sponsoring and helping drive this bill – I am so proud to have them by my side. And I am very thankful to all the many, many groups that played a role in bringing this historic legislation to life. This legislation would not be possible without the endless expertise that went into it from so many of the supporting organizations.