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Helping Survivors Lead Longer Better Lives

By Gwen Nichols, M.D., Chief Medical Officer | April 17, 2024
Hiker looking at mountains

Late last year I had the privilege of attending a special screening of the documentary American Symphony. The film chronicles the experiences of writer Suleika Jaouad and her husband musician Jon Batiste after learning that her acute myeloid leukemia (AML) had returned after years of remission. The movie shows how the couple navigates uncertainty, treatment, and their new normal afterwards. 

I first met Suleika in 2021 when I had the extraordinary opportunity to interview her about her memoir Between Two Kingdoms, which recounted her treatment and recovery after first being diagnosed with AML at the age of 22.  I was moved by her resilience and commitment to living an adventurous life—themes that also permeate American Symphony.

For Suleika and Jon, creative expression is a critical part of their lives.  In the documentary you learn how incredibly important it becomes in helping them cope with blood cancer. When Suleika’s medication causes blurry vision that makes it difficult for her to write, she starts painting instead. Jon continues working on the groundbreaking symphony he’s planning to debut at Carnegie Hall, and during Suleika’s hospital stays composes lullabies to calm and comfort her. After a second bone marrow transplant drives her AML back into remission, the couple reimagines and prepares for their life after treatment. It is a story about survivorship—and the joys, challenges and adjustments that come with it.

Blood cancer survival rates have improved dramatically in recent decades, thanks to groundbreaking advancements in treatment and care. Today, an estimated 1.6 million Americans are in remission from blood cancer or living with the diagnosis, which is often managed and treated as a chronic disease. Even after cancer is no longer in crisis mode, survivors and their families often need ongoing support—from physical to emotional to financial. These can include things like managing long-term side effects from treatment, dealing with the inevitable anxiety at follow-up visits, the uncertainty of possible relapse, and struggling to afford the high cost of cutting-edge blood cancer care. Cancer can also derail dreams of going to college, advancing a career, or raising a family. And it can have a debilitating effect on caregivers. A particularly powerful scene in American Symphony shows Jon grappling with his own anxiety during Suleika’s treatment and recovery.

At The Leukemia & Lymphoma Society (LLS) we are dedicated to supporting blood cancer survivors and their families every step of the way—from diagnosis to treatment to remission and beyond. Our holistic, 360° approach involves efforts across research, patient support and advocacy to help those impacted by blood cancer live longer and better lives. Here are some of the ways we’re surrounding survivors with a lifelong circle of care.  

 

Personalized Support and Resources

We provide ongoing free personalized support through our Information Specialists, and one-on-one consultations with registered dieticians in LLS’s Nutrition Education Services Center to assist survivors of all types of cancers with food choices during and after treatment.  And our robust educational materials include a  Survivorship Workbook for Adults to help organize all the important information needed for long-term management of blood cancer, with specially designed versions for children and adolescents, as well as young adults

In addition, we know the integral role mental health plays in coping, so we offer resources for survivors and families to connect with others in similar situations through LLS support groups and online community, and we’re in the process of developing a new blood cancer Survivor Network to provide one-to-one peer support from trained volunteer survivor advocates.

 

Scholarships to Reignite Educational Dreams

Academic plans are often put on hold when dealing with blood cancer. So we launched the LLS Scholarship for Blood Cancer Survivors in 2022 to support tuition expenses when education has been interrupted or postponed. The program provides up to $7,500 per year for tuition in vocational, two-year or four-year programs to blood cancer survivors (regardless of current age) who were diagnosed by age 25. Last year LLS awarded 105 scholarships to students from all over the U.S. and renewed all 2022 scholarships that were eligible—all part of our effort to give survivors the best opportunities for full and rewarding lives.

 

Advocacy for Affordable Care

We also advocate for policies to help cap out-of-pocket drug costs, combat surprise medical bills, increase access to FDA-approved drugs, and expand insurance coverage—issues that can all affect well-being as survivors move forward with their lives. 

 

New Research to Better Understand Survivors’ Needs

Over the next five years, our new LLS Survivorship Program will help us identify more opportunities to improve survivors’ quality of life. This will include funding research to understand and prevent treatment complications and relapses like Suleika’s; and discovering more about the impact of therapies on fertility and sexual function. We will leverage those learnings to create new support resources and programs and advocate for policies that address survivors’ long-term concerns.  
We’ll also consolidate data on the potential long-term effects of groundbreaking immunotherapies like CAR T- cell therapy—especially when used to treat children—so we can mitigate potential issues as we continue treating patients with these transformational lifesaving therapies.

 

Addressing Medical Debt

The high cost of specialized, innovative cancer care can leave survivors and their families with a lifetime of debt. While LLS offers financial assistance programs for those actively receiving blood cancer treatment and care, the longer-term impact of healthcare costs on survivors’ lives has remained unsolved up to now. We’re exploring ways to provide immediate financial assistance for urgent needs after treatment by partnering with organizations like Dollar For.  And we’re studying current hospital financial navigation programs and ways they might be improved to focus more on survivors’ financial needs than cost recovery. Then we’ll collaborate on solutions with health care providers, insurance carriers, pharmaceutical companies and government representatives. 

 

Transition Services

When patients are no longer being actively treated for cancer, they often lose the continuity of care they’ve been used to. Young adults who have transitioned out of pediatric care are particularly vulnerable as they suddenly become responsible for arranging follow-up visits and dealing with post-treatment issues. As part of our LLS Survivorship Program, we’ll smooth the transition by creating a cross-country network of practitioners to help survivors find appropriate care close to home. And we’ll develop and partner with more resources to address issues like mental health, social challenges, career development, financial planning, fertility and reproductive health.

Through our comprehensive 360° approach, LLS will continue working toward meeting the full range of survivors’ needs throughout their lives. We want survivors and their families to know that they are not alone as they navigate their futures and to continue to be connected to LLS. 

In American Symphony, Suleika says survivorship can be a life of extremes, with both good things and incredibly hard things happening in tandem. We see that play out as the couple experiences the highs and the lows—from their joyous wedding right before her transplant to the preemptive act of shaving her head to the final celebratory moments of the movie when Jon premiers his symphony at Carnegie Hall with Suleika in attendance.   

Every survivor will manage life with blood cancer in their own special way, but LLS will always be there to support. We cannot change the diagnosis. But we can help ease the complexities of life moving through it. 

 

 

Gwen Nichols

ABOUT THE AUTHOR

As LLS's Chief Medical Officer (CMO), Gwen Nichols, M.D., plays a critical role in advancing cures through a unique combination of clinical, academic and pharmaceutical experience. She oversees LLS's scientific research portfolio, patient services and policy and advocacy initiatives. Dr. Nichols leads an international team of preeminent leaders in pediatric acute leukemia to conceive, develop and implement LLS PedAL, a first of its kind global master clinical trial and a key component of the Dare to Dream Project, transforming treatment and care for kids with blood cancer.

A physician and scientific researcher, Dr. Nichols has dedicated her career to advancing cures for cancers. Before joining LLS, she was oncology site head of the Roche Translational Clinical Research Center, where she worked to develop new cancer therapies, translating them from the laboratory to clinical trials. Prior to joining Roche in 2007, Dr. Nichols was at Columbia University for more than ten years, where she served as the director of the Hematologic Malignancies Program.

While at Columbia University, Dr. Nichols maintained an active clinical practice and received the prestigious honors of "Physician of the Year" from Columbia University and the "Humanism in Medicine Award" from the American Association of Medical Colleges.