Leukemia and Lymphoma Society

Blood Cancer Survivors Find Special Meaning and Connection as Employee Champions of LLS Light the Night Events

meixelk — Wed, 24 Apr 2024 21:12:28 +0000

Blood Cancer Survivors Find Special Meaning and Connection as Employee Champions of LLS Light the Night Events meixelk Wed, 04/24/2024 - 17:12

The Leukemia & Lymphoma Society (LLS) is proud of our continuing partnership with Gilead and Kite Oncology as the National Presenting Sponsor of Celebration and Community at Light The Night events across the U.S. helping bring people together and raise critical funds to support patients and their families.

Gilead and Kite Oncology employees are also proud to support LLS through Light The Night by volunteering their time at the events and serving as internal champions amongst employees, such as Caroline and Tiffany, both blood cancer survivors.

Light The Night events occur in over 100 cities across the U.S. each fall, bringing together survivors, supporters, and individuals who have lost loved ones to blood cancer. As Light The Night’s National Presenting Sponsor of Celebration and Community, Gilead and Kite Oncology generate light and warmth to patients and their families from coast to coast. Participants carry illuminated lanterns for a memorable and moving evening.

Walks for 2024 are well underway and open for registration here.

The Leukemia & Lymphoma Society

A SURVIVOR’S EXPERIENCE LEADS TO A FULFILLING CAREER

Caroline Strohm, an Authorized Treatment Center (ATC) Onboarding Director at Kite, a Gilead Company, with a background in oncology nursing, is one of the many blood cancer survivors celebrated at Light The Night. When Caroline was diagnosed with chronic myeloid leukemia (CML) in 2003, she worried she would miss out on her 2-year-old son's life. Today, she’s 21 years cancer-free.

Caroline credits fundraising from events like Light The Night with helping change her life. She’s most grateful for the community she has gained: “I am forever connected to the staff in my local LLS region and find such joy in supporting the many programs, especially Light The Night, that provide patients like me with hope, community, and the potential for a world without cancer.”

Caroline’s experience as a blood cancer survivor led her to become an oncology nurse, caring for other blood cancer patients.

“I now have the privilege of working for Kite, which is committed to changing the lives of patients through CAR T-cell therapy. It inspires me every day, knowing that Gilead and Kite support the continued work of LLS, an organization that truly saved my life.”

Caroline was able to attend several Light The Night events in 2023, where she spent evenings talking with patients about their experiences and remembering lost loved ones.

“This community is unlike any other and I feel overwhelmed with gratitude that I get to be a part of it.”

BLOOD CANCER SURVIVOR DEDICATES LIFE TO HELPING OTHERS WITH CANCER

On Christmas Eve in 1998, Tiffany found out she had blood cancer. She was a senior in college. Diagnosed with non-Hodgkin lymphoma (NHL), she began chemotherapy on her 24th birthday.

Now 25 years cancer-free, Tiffany is grateful for the support she received from LLS during her treatment, especially connecting with other survivors.

“I made up my mind after my treatment that I was going to dedicate my life to helping others with cancer,” said Tiffany. She works as a Senior Cell Therapy Account Manager for Kite, a Gilead Company, supporting patients with lymphoma.

As an employee champion for the Light the Night program, Tiffany helped staff Light The Night walks across the country in 2023.

“Being my 25th cancer anniversary, many of my friends and family came out to the Morristown, New Jersey Light The Night walk to help me celebrate—and what a wonderful event it was!”

The funds raised through Light The Night are used to support LLS’s mission priorities: Research, Education & Support, and Policy & Advocacy.

Light The Night has something for everyone–patients, survivors, families, companies, and employees.

To become part of the Light The Night community, visit www.lightthenight.org.

Blood cancer patients and their families can contact our LLS Information Specialists, highly trained oncology social workers and nurses, who assist through treatment, financial, and social challenges at (800) 955-4572, Monday through Friday, 9 a.m. to 9 p.m., ET.

About Gilead and Kite Oncology

Gilead and Kite Oncology are changing the future of oncology. From antibody drug conjugates and small molecules to cell-therapy based approaches, our R&D programs and partnerships are creating possibilities for people with overlooked, underserved, and difficult-to-treat cancers. We are focused on helping to bring more life to people with cancer and changing the way cancer is treated.

Patients' Medical Histories Shouldn't Determine Whether They're Insurable

holeywer — Wed, 24 Apr 2024 17:49:12 +0000

Patients' Medical Histories Shouldn't Determine Whether They're Insurable holeywer Wed, 04/24/2024 - 13:49

All patients deserve access to quality, affordable health plans. Fortunately, most insurance cannot use patients' pre-existing conditions against them. But these protections don't exist for Medicare Supplement Insurance, known as Medigap. In fact, Medigap is one of the only types of health coverage that can charge patients more, or deny them coverage, due to their age or health status.

LLS is advocating for policies that would allow patients to enroll in Medigap—without paying higher rates—regardless of their health or age.

A version of the following op-ed was originally published in Spanish by La Opinión. It was written by Esteban Zapiain, a retired music teacher and a member of the Livermore Amador Symphony who lives in Union City, California. Esteban is a chronic myeloid leukemia patient and a volunteer advocate with The Leukemia & Lymphoma Society.

I could only hear white noise coming from the doctor after he told me my diagnosis of chronic myeloid leukemia. I could see and hear him, but nothing coherent entered my ears. That was 13 years ago, and April marks what I call my “cancerversary.”

Since those terrifying early days of my diagnosis, I’ve learned a lot more about my cancer—and how I can manage it. These days, it’s the potential cost that frightens me almost as much as the disease itself.

I am 73 years old and on Medicare, like millions of other Californians. Traditional Medicare doesn’t pay for everything and has no out-of-pocket maximum. To help cover the costs of my ongoing medical care, I depend on supplementary insurance through my spouse’s employer.

Supplemental insurance is critical for many seniors – especially for people living with serious, chronic medical conditions like me. That extra coverage means we won’t risk losing everything if we need a lot of expensive healthcare. But I worry about what would happen if she—and I—lost our coverage.

In 2018, that almost happened. We had a real scare when my wife had to have heart surgery. Until then, it never occurred to me that if I were on my own, I might have to get my own insurance. Little did I know that if I did, I’d be charged more for the Medicare Supplement Insurance because of my cancer diagnosis.

The best-kept secret in healthcare is that Medicare Supplement Insurance plans, also known as Medigap, can deny coverage or charge more for people (like me) who have a pre-existing condition (like cancer). This is unfair since nobody chooses to have cancer. And it’s impractical since nearly one in two Americans has a pre-existing condition. Unfortunately, protections for folks with pre-existing conditions don’t extend to Medigap.

To be fair, there are other options for Medicare enrollees seeking to save money on their health costs. Many enroll in Medicare Advantage plans. However, these plans are often impractical for people with serious medical conditions since patients are forced to navigate various restrictions and narrow networks. That usually prevents them from seeing the oncologist they have seen for years or keeps them from seeing specialists who may be out-of-network.

California Senate Bill 1236, authored by State Senator Catherine Blakespear, will change this. It will stop insurers from using patients’ health history to charge us more or deny us coverage. And that means Californians like me, who live with a chronic illness, could finally get affordable and high-quality health insurance after age 65.

Our medical history should not decide whether we are insurable. I urge the legislature to pass this meaningful legislation now to benefit all Californians as they age.

Esteban Zapiain, advocate and blood cancer survivor

Volunteers: The Engine Powering LLS’s Mission

parlapie — Mon, 22 Apr 2024 13:00:00 +0000

Volunteers: The Engine Powering LLS’s Mission parlapie Mon, 04/22/2024 - 09:00

I was always aware that volunteers with The Leukemia & Lymphoma Society (LLS) drive impact for blood cancer patients and families. But it wasn’t until Thanksgiving Day 2007 that I discovered the full force of their power. My wife, Holly, had recently been diagnosed with follicular lymphoma and our family was still reeling from the news. She was feeling quite ill, and we were exhausted with worry and trying to keep life as normal as possible for our two young children. After dinner my older brother jumped up from the couch and announced he was going to do an LLS Team in Training marathon in Holly’s honor. I watched with admiration as he set up his fundraising page, began building his team and reached out to his network for donations. By the time he crossed the finish line at the San Diego Rock and Roll Marathon, he had raised thousands of dollars for LLS to fund research, support services and advocacy for blood cancer patients and their families.

But it wasn’t the amount of money raised that was so inspiring. It was the vibrant community of committed and compassionate LLS volunteers running and walking with him—all dedicated to transforming the landscape of blood cancer treatment and care. I found them so motivating that I became an LLS volunteer myself, participating in many of LLS’s endurance-based fundraising programs, competing as a Visionaries Of The Year Candidate in Delaware, and joining my local LLS Board of Trustees. My involvement with LLS grew when I became the co-chair of LLS’s PedAL master clinical trial for pediatric acute leukemia, the cornerstone of LLS’s Dare to Dream Project. And since May 2023 I’ve had the honor of leading this life-changing organization and meeting many more of LLS’s phenomenal volunteers, who continue to inspire me every single day.

A Grateful Shout-Out to All LLS Volunteers

April is National Volunteer Month, and I want to thank you for your time and dedication all year round. Whether participating in fundraising events or leadership campaigns, offering peer-to-peer support to blood cancer patients, advocating for policy change, or getting involved in any other number of ways, you are the heart, soul, and voice of LLS.

For many of you, blood cancer has hit home, as it has in my own family. You might have a parent, spouse, sibling, child, close relative, or friend dealing with diagnosis, treatment, or recurrence. You may be a survivor yourself, living with fear that the cancer could return. Or sadly, you may have lost a loved one to a blood cancer. Perhaps you don’t have a personal connection but volunteer simply because you want to make a difference in the world. I am grateful to all of you for your commitment, generosity of heart and spirit, and for inspiring others to support LLS’s lifesaving, life-changing mission.

As a volunteer myself, I’ve experienced how challenging it can be sometimes. I’ve encountered the frustration of donor fatigue when fundraising for LLS events. I’ve learned first-hand that when you do a good job with one volunteer project, you often get asked to do another and then another until volunteering starts to feel like a second full-time job. Thank you for your passion, patience, and perseverance. Your efforts truly are driving progress for blood cancer patients and families. LLS couldn’t exist without you.

I also know how hard it can be to tell your personal story. I still get choked up when I talk about Holly’s illness. She's faced multiple relapses, and new therapies supported by LLS continue to be her best hope for prolonged remissions and even, one day, for a cure. The experience has given me a greater appreciation for what blood cancer patients and families endure, and how volunteers like you provide support and hope.

Celebrating LLS’s 2024 National Volunteer Award Winners

As a pediatric hematologist oncologist, and now as LLS President and CEO, I’ve met many parents who’ve lost children to blood cancer. Yet as LLS volunteers, they bravely tell their heartbreaking stories over and over to help other families.

J.J. Duncan, Recipient of LLS President's Award

J.J. Duncan is one of those parents and is the recipient of LLS’s top volunteer honor, the 2024 President’s Award. It recognizes individuals who have shown excellence in making substantive transformational impact at LLS.

After losing her 11-year-old son Mason to leukemia, J.J. channeled her grief into advocacy for pediatric patients and their families.

As a member of LLS’s national Pediatric Advocacy Committee and the California Advocacy Committee, J.J. shares her family’s story through video, written reports, and in-person legislative meetings.

I first met J.J. during LLS’s Lobby Day in May 2023 and again in October at LLS’s Dare to Dream Summit. At these Washington, D.C. events, J.J. talked about the red tape and delays her LA-based family experienced when trying to get Mason into a desperately needed clinical trial in Houston; and she met with senators and members of Congress to advocate for the Accelerating Kids’ Access to Care Act (AKACA). This legislation will drastically reduce barriers that impede children who are on Medicaid from receiving needed specialty care outside their home states. Thanks to J.J. and other volunteer advocates, AKACA currently has 85 House cosponsors and 36 Senate cosponsors. And we expect those numbers to continue growing. When passed into law, AKACA will make it much easier for families who must travel across state lines to get their children the care they need.

J.J.’s efforts to end blood cancer also extend beyond work with LLS. She and her wife have started the Not Today Cancer Foundation in honor of Mason. The Foundation’s flagship event is an annual 5K run/walk to raise funds for pediatric cancer, which had more than 700 participants and raised more than $50,000 in 2023. That’s volunteer impact in action!

Gurshaman Baweja, Recipient of LLS 2024 de Villiers Family Legacy Award

Gurshaman Baweja is another parent who honors his child’s memory through volunteering for LLS. His daughter Keerat was diagnosed with leukemia in 2019 and died in 2020 at the age of 23—not from the cancer itself, but from the effects her treatment had on her body.

From the moment I met Gurshaman, I was blown away by his kindness, empathy, philanthropy, and advocacy, which have earned him LLS’s 2024 de Villiers Family Legacy Award. This award recognizes individuals who have raised funds and influenced policy with a passion and effort that matches that of Rudolph and Antoinette de Villiers, who founded LLS in 1949 after losing their 16-year-old son Robbie to leukemia.

Gurshaman has worked tirelessly in his community as a mission speaker and fundraiser and his Light The Night team has raised nearly $300,000 over the past two years. Gurshaman says, “Cancer is tough, but Keerat was tougher, and we owe it to her to keep fighting.” Despite her illness she co-captained her dance team, graduated with a Bachelor’s degree in Mechanical Engineering from UT Austin, and started her dream job at Boeing. By sharing Keerat’s story, Gurshaman inspires others to join him in supporting LLS’s mission. He is especially passionate about urging lawmakers to fund pediatric research, as a member of the Texas Advocacy Committee, an LLS representative at the Alliance for Childhood Cancer, and a point person for local in-district meetings with members of Congress from Texas. He and his wife Tripat and daughter Rasna are also setting up a scholarship foundation in Keerat’s name for young women interested in engineering. Gurshaman is a wonderful example of how one person can advance LLS’s mission through leadership, commitment, and community outreach.

Dr. Matthew Matasar, Recipient of LLS 2024 Quality of Life Award

Supporting those impacted by blood cancer is integral to helping patients live longer, better lives. It’s a role that Dr. Matthew Matasar, a hematologist oncologist specializing in lymphoma and Chief of the Division of Blood Disorders at Rutgers Cancer Institute of New Jersey, takes to new heights as an LLS advocate. Countless patients over the years have come to LLS looking for support or a second opinion, and Dr. Matasar has personally adjusted his schedule in order to see these patients within days. His compassion shines through every interaction.

Dr. Matasar has served on the Board of Trustees for LLS’s Long Island and New Jersey regions, referring patients and families to LLS’s free resources and making sure his colleagues do, too. He’s chaired and participated in many local Light The Night walks, raising awareness and funds, and increasing Light The Night engagement at his healthcare facility. He also often presents at LLS patient-facing programs both locally and nationally.

And with an LLS research grant, Dr. Matasar engaged with more than 200 long-term survivors of Hodgkin lymphoma to determine those at greater risk for developing heart disease after radiation therapy to the chest and which diagnostic tests are best at detecting heart disease before damage occurs. For his many years of involvement and relentless patient support, LLS honors Dr. Matasar with the 2024 Quality of Life Award.

Congratulations to our National Volunteer Awardees, and every LLS volunteer! You can read more about each of our awardees here.

You are all champions to me!

Since that Thanksgiving Day in 2007, I’ve seen and felt the incredible power of LLS volunteers—power that is generated by all of you! You’ve inspired me so much that I’ll be riding 100 miles around Lake Tahoe in America’s Most Beautiful Bike Ride on Sunday, June 2, 2024, alongside my brother. We’ve each participated in many LLS athletic events over the years, but this is the first time we’re doing one together.

Even though I’ve never ever pedaled that far before, I know I’ll get there because you’ve all shown me what is possible with grit and determination. Thank you for those lessons, and for all you do for LLS.

E. Anders Kolb, M.D., President & Chief Executive Officer

Where Blood Cancer Meets Nature: Why This Scholarship Recipient Is Saving the Earth

meixelk — Fri, 19 Apr 2024 14:10:12 +0000

Where Blood Cancer Meets Nature: Why This Scholarship Recipient Is Saving the Earth meixelk Fri, 04/19/2024 - 10:10

When we think about the future, a lot can feel uncertain—especially as a teenager or young adult (AYA) with blood cancer.

We get it.

The AYA crowd faces a lot of unique challenges. Many are grappling with school or work, friendships, or life-altering questions about dating, fertility, or parenting.

The Leukemia & Lymphoma Society (LLS) works to help answer some of these questions or ease the moments that are especially hard through resources like a Survivorship Workbook for Young Adults, A Teen’s Guide to Everything Cancer, and the LLS Scholarship for Blood Cancer Survivors.

The LLS Scholarship was designed to help offset the high cost of cancer care and empower the younger generation to look ahead—to a future full of possibility.

Our Scholarship Recipients Blow Us Away

We know planning for the future can feel daunting during or after cancer treatment. Goals often change and perspectives shift.

The LLS Scholarship for Blood Cancer Survivors gives a little boost to pursue what matters: leading a fulfilling life a.c. (after cancer).

Many former blood cancer patients go on to work in healthcare—doctors, nurses, researchers, even hospital administrators. We’ve met survivors who become pilots, artists, and philanthropists. In Mollie’s case: a rewilder.

Meet Mollie

In honor of Earth Day, let us introduce you to Mollie. Acute lymphoblastic leukemia (ALL) survivor. College student. Earth advocate. And recent recipient of the LLS Scholarship.

Applicants are asked to write an essay. This is hers. We’ll let it speak for itself.

The Leukemia & Lymphoma Society

“My Purpose”

“Okizu comes from the Sioux language, and means, ‘To come together, to heal from hurt, to make whole.’ Essentially, Okizu means unity.

Since moving to California post-treatment, I have been attending a summer camp called Camp Okizu—a place for childhood cancer survivors and current patients to bond over shared experiences and recreate outdoors. As campers, we were given the ability to dance, make ice cream, go swimming in the lake, play volleyball, swap friendship bracelets, and sleep under the stars– all while acknowledging one another’s histories and living at peace with them. I found so much beauty in the fact that sharing your story was optional—no one would question how you looked or acted. They simply took you for you.

Then, in 2020, a tragedy occurred. Camp Okizu was burned to the ground in the infamous California wildfires. Small joys were stripped away; like giving my fellow cabinmates hugs upon arriving camp by bus, picking blackberries from along the wheelchair-accessible docks, and barbecuing with nurses and doctors who I would've otherwise thought were unapproachable and scary.

Losing Okizu caused me to find the importance of community, diversity, and nature. I find so much joy in backpacking, hiking, and being outside because I can break from the pressures of urban life. I want other people to be able to enjoy the same outdoor spaces and experiences— regardless of who they are.

Last year, after doing some research for my college application essays, I discovered the perfect word for what I want to pursue: rewilding. Rewilding is an approach to ecological restoration and conservation that emphasizes bringing an environment back to its natural state. This could include things like re-introducing local plants and animals to urban areas, implementing greenspaces, and granting people more access to their local parks and undeveloped land.

To pursue this concept, I have spent my free time learning outdoor skills and sharing them with younger generations, specifically through Boy Scouts of America. I have cultivated confidence in my knowledge about building fires safely, first aid wilderness responses, and how to lead a diverse group in outdoor adventures so that they can in turn develop their own confidence. I’ve spent time learning about the local ecology in California—everything from the lace lichen that decorates low-growing Oak trees, to the towering Redwoods that stand tall along our golden coast. I am currently taking classes on the physics of stars and black holes, and the biology of evolving Animalia at UC San Diego, and I look forward to exploring the intersection between humanities and science.

I recently attended a lecture on Plitidepsin—a molecule that comes from Mediterranean sea squirts and treats multiple myeloma. Though I know very little about pharmaceutical sciences and cell biology, I was mesmerized by the fact that a dainty little sea creature could host toxins which could cure cancers! What other superpowers do our ocean and forest creatures yield?

Our oceans help save cancer patients like me and in turn, we must go on to help our world—to heal our environments and vulnerable communities from the impacts of climate change and to make it whole again. Okizu does not only exist behind summer camp’s cobble gates—it is something I can practice in my everyday life. I can use my ability as a cancer survivor to heal communities and appreciate life for what it is.

I am grateful for my life, and with the aid of [organizations like LLS], I hope to share my gratitude with the world.”

LEARN MORE ABOUT THE LLS SCHOLARSHIP FOR BLOOD CANCER SURVIVORS

Mollie is one of many Scholarship recipients who imagines a better future. The least we can do is help them create it.

In her words: “we must go on to help our world.”

We'll do our part—working toward a cure and improving the lives of everyone affected by blood cancer. What role will you play?

DONATE TO HELP CHANGE THE WORLD

When The Time Comes: Katie & Phil’s Story

meixelk — Tue, 02 Apr 2024 18:11:13 +0000

When The Time Comes: Katie & Phil’s Story meixelk Tue, 04/02/2024 - 14:11 The Leukemia & Lymphoma Society

What do you do when your biggest fear comes true? It’s a reality that so many parents of children who have blood cancer face.

The shift is abrupt. One day everything is fine. Your child is a living, breathing reminder of everything good in the world—and then cancer happens.

You don’t know when it started but it’s here. Your world flips upside down and you find yourself gasping for a breath you can’t quite catch.

It’s like a free fall. You’re reaching for your parachute, praying it opens in time to save you, your child, your family. And then the unthinkable—you find yourself bracing for impact as the inevitable creeps closer and closer.

Your child is gone. Too young. Too soon.

The pain is incomprehensible. Parents aren’t supposed to bury their children. Yet, so many have, like Katie and Mike Wayner.

Leukemia claimed Phil’s life just as it was getting started

Katie and Mike’s son, Phil, turned 3 on October 30, 2019. “Phil was both sweet and wild, shy and outgoing,” she reminisced. “His sweet-natured personality shined from the start—he really was such an easy-going baby.”

“He had a bit of a shy personality, watching others before jumping in, and could be described as quiet—but around those he knew well and loved, he was a wild and silly toddler.”

Phil was special. He loved helping his dad cut the grass, playing outdoors, and being a big brother. He kept Katie and Mike busy, but in the best way.

Two months after his third birthday, Phil was diagnosed with B-cell acute lymphoblastic leukemia (B-ALL).

For kids Phil’s age, the prognosis for B-ALL is usually optimistic. 90% of kids younger than 15 survive for five years or more, so while his diagnosis was scary, there wasn’t any need to prepare for the worst.

Phil began treatment shortly after his diagnosis, always in good spirits.

“I don’t think Phil had even taken a round of antibiotics before his diagnosis! So taking medicine and complying with medical procedures and treatments was a completely new world,” Katie recalled. “But Phil did all that he was asked—with a little bribery and encouragement of course.”

Doctors prescribed a 2.5-year-long treatment protocol for Phil. He reached remission, but his cancer recurred in January 2022 just two months before his protocol was supposed to end.

Eight months later, he was gone.

“Some days, I still struggle with the reality that we will never understand why this happened.”

Grief overwhelmed Katie & Mike after Phil’s passing

“It’s hard to put into words what my thoughts and emotions were as Phil’s journey was drawing to an end. It’s hard to put words to situations and experiences that leave others speechless.”

Phil was in treatment from the time he was diagnosed until he passed away. When Katie and Mike learned there was nothing more the doctors could do to help their child, they were in disbelief.

“When we heard the words ‘there’s nothing more that can be done,’ I questioned if that was really it. Did we really just go through all that we did—did Phil really go through everything he did—to simply be told there’s nothing else to be done?”

As worry about Phil’s prognosis and his comfort consumed his parents, they sought out resources to help them through this unimaginable experience. They had so many questions.

Why had Phil’s cancer turned terminal?

What do you say to a five-year-old who’s dying?

Will Phil’s younger brothers remember him?

How can a parent survive after experiencing such a devastating loss?

While some of these questions remain unanswered, Katie and Mike received support from a multitude of sources during Phil’s treatment and after he passed.

“I believe I learned about The Dare to Dream Project after Phil’s relapse,” said Katie. “When I learned that there was a whole project, a whole mission, focused just on children and blood cancer, I was a bit overwhelmed with gratitude, and felt less alone in this childhood cancer world.”

Phil’s social worker encouraged Katie to apply for a transportation grant from The Leukemia & Lymphoma Society (LLS), at which point she learned about other resources. They received the funds, which helped them transport Phil to a different healthcare facility four hours from home.

After receiving the grant, a LLS patient and community outreach team member connected with the family to offer support. This was on the heels of learning that Phil most likely wouldn’t survive his diagnosis.

“She became an ongoing support through our end-of-life questions and needs, and even connected me with another parent who was involved with LLS and had unfortunately lost her daughter to leukemia too.”

“I felt less alone and I have LLS to thank for that.”

Coping with complex feelings after losing a child

Parenting a child who has blood cancer is an experience that changes you forever. And losing that child causes inescapable pain that few people understand.

Finding your way after such a traumatic experience is daunting. Katie has a few suggestions to help other parents make it through.

1. “It’s okay to be ‘selfish’ and focus on you and your family.”

So many people loved and supported Phil throughout his cancer diagnosis and treatment. As Phil deteriorated, Katie was overwhelmed by their needs—but the reality was that their needs didn’t matter at that time. She switched gears to focus on Phil and her immediate family.

“Putting your child, other children, and spouse first is the most important thing in surviving a situation like this.”

2. Do not compare your story with someone else’s.

When Phil’s cancer returned, Katie searched high and low for stories of kids whose leukemia had recurred. She even connected with other people on social media who had similar experiences. In her words, it was helpful... until it wasn’t.

“Each child’s disease is so unique and therefore it responds differently to treatment. It was exhausting trying to find stories that matched Phil’s because the reality is that there is none.”

3. Try not to question your choices and decision making.

Hindsight is 20/20, so it isn’t fair to question decisions you made with the information you had at the time. Rest assured that you made the best choices you could for your child’s treatment and let go of the things you can’t control.

“Trust that you know your child best, and that you made the best decisions for him or her.”

4. Your feelings are valid, whatever they may be.

It isn’t unusual for parents to experience unexpected feelings after losing a child, especially after a long and traumatic cancer treatment. In Katie’s case, she felt relief once Phil passed, and then the guilt kicked in.

“For weeks, I felt awful. As time allowed me to process and heal, I realized that I had spent the last 8 months living Phil’s relapse in complete uncertainty and terror. When Phil took his last breath, that uncertainty stopped too.”

5. Don’t be afraid to ask for what you need.

In the wake of a loss this devastating, there are so many people who want to help and support you—they just don’t know how or when. Make sure you voice your needs to those who care, whether that’s time and space, a home-cooked meal, or a child-free evening to process big feelings.

“Unfortunately, it becomes our responsibility, in some ways, to help others understand what we’re going through so they can better help us.”

6. Loving your child is the best gift you could have given them.

“Your child may have endured hard things and experienced pain and suffering, but they were happy because you were present and you loved them.

I know Phil was happy. I know he knew how much we loved him. Despite everything he endured, everything we endured together, Phil knew that we loved him with all that we had. He knew that we would always be there with him. That is truly what matters most and that has given me comfort through this all.”

7. Try to remember the good.

Childhood cancer takes so much from everyone—your child, your family, and you. But there are still good experiences and memories in between the pain and trauma you and your family endured.

“I often find myself thinking back on the many beautiful memories me and my husband made with Phil while in the hospital. I may have grieved, and am still very much grieving, the things lost because of Phil’s cancer diagnosis and the unfair path it gave us, but it also gifted us so much too.”

Phil’s legacy lives on

Five months after Phil took his last breath, his story continued. Katie became an LLS Dare to Dream ambassador.

“There was a whole group of people dedicated to changing the treatment and outcome of kids with blood cancer and I was eager to join them.”

It was tough transitioning back into the world of childhood cancer after losing Phil, but Katie knew it was her calling. She needed to continue in Phil’s honor in an effort to save other kids.

But she didn’t stop there. She and Mike have woven Phil’s legacy into many different events and other efforts.

In October 2023, Katie and Mike hosted their first annual Phil’s Ultimate Golf Outing. Phil loved playing golf—he even had his own set of golf clubs—so it was the perfect way for them to honor him and raise funds for Dare to Dream.

This year, their family has hopes of purchasing video game systems for their home hospital. “Phil was often in isolation while at the hospital. When we transferred his care, the new hospital system had gaming systems that could be brought and placed in your room. My husband and I enjoyed watching and playing with him, so we hope to be able to give back to provide kids with fun while being stuck in the hospital.”

Katie and Mike have also begun donating blood at regular intervals. They know how big a difference it made in Phil’s care and want to help do the same for others.

“My husband and I will continue to donate blood products as often as we can in honor of Phil because it is a simple act of kindness that is life saving.”

Join Katie in supporting The Dare to Dream Project. With your help, we hope to help kids like Phil survive and thrive in the face of blood cancer. Learn how you can get involved today.

“People Just Didn’t Get It”: Treating Young Adults with Cancer

meixelk — Wed, 20 Mar 2024 17:06:00 +0000

“People Just Didn’t Get It”: Treating Young Adults with Cancer meixelk Wed, 03/20/2024 - 13:06

Think of spring break: warm sunny skies, a refreshing drink, and hopefully, a feeling of freedom.

Allison Rosenthal was dreaming of all of it in her second year of medical school. But instead of getting on a plane to meet friends, she went to the emergency room, and soon found out that she had acute promyelocytic leukemia (APL).

But her story didn’t end there. She pushed through multiple years of challenging treatment, and her medical studies on top of that. Now in remission, she's a hematologist-oncologist specializing in lymphoma. And many of her patients are teens or young adults—just around the age she was when she was diagnosed.

We asked Dr. Rosenthal to share more of her story—from being a patient to becoming a survivor and now, an oncologist.

The Leukemia & Lymphoma Society

Q: How did it feel to receive a leukemia diagnosis as a medical student?

A: I had gone to our local ER thinking I had the flu, because I had a fever and was tired and throwing up. They started me on IV fluids, and then the next person I met was a hematologist. They said something about blood cancer, and then asked, “Do you want a bone marrow biopsy now or later?” And I said, “What? Are you saying I don’t have the flu?”

My oncologist was very kind and understanding about the fact that I was studying medicine. He would always go over my labs with me and ask me what I thought. He involved me in my own care process, which I found really valuable. It felt good to be part of it, to understand what exactly they were looking for and feel like I had some say. But not everyone with a blood cancer diagnosis might have my background, and as an oncologist, I try to be as collaborative and supportive as my own doctors.

Q: What are some of your most memorable moments as a blood cancer patient?

A: I had a pretty serious infection during my first round of chemotherapy. I had to get a PICC (peripherally inserted central catheter) line to get antibiotics, and then that got infected as well. That was a lot for my family to take on. But I say this to a lot to my patients now: you’re still your parents’ baby when you need them.

There was also a pill that was a major component of my leukemia therapy, and at one point, our insurance company said, "We’re not paying for that anymore”—without any regard for the impact that had on my life. At the time, the pills were $70 each and I had to take seven of them a day. (For those counting, that’s nearly $500 a day.) Fortunately, my oncologist’s office knew of financial assistance programs, but it was so alarming.

On the other hand, I remember exactly where I was sitting when I got the phone call that my first bone marrow biopsy after chemotherapy was clear. That was a good day.

Q: Now, as a hematologist-oncologist, what have been some challenges you've seen your own patients face? What have been some of their highlights?

A: Some days are really hard, and some days have big wins and milestones. My situation isn’t exactly like my patients’, but I can appreciate the uncertainty and fear at the beginning, and the importance of feeling confident in your team, like you’re in good hands when your life is on the line.

I fight hard for them because I know just how important some of the little things are. They ask, “Can I still go to school?” Yes, absolutely. Let’s try to keep things as normal as possible. Or, “I’ve got a five-year-old at home. How do I explain to them that Mommy’s going to lose her hair?”

I keep a running list of my young adult patients, because it’s fun to celebrate not just your cancer being gone, but also that you graduated from school, or you had another kid, or you saw a loved one get married. There are so many things we as doctors get to be a part of, because we become surrogate family members.

Q: Why did you decide to focus on treating adolescents and young adults?

A: I realized in going through treatment myself that people just didn’t get it. Nobody recognizes how interruptive it is to have cancer in your developmental years, when you’re supposed to be forming relationships and starting careers and figuring out who you are as a person.

I think patients in that age group should have more attention and more research. Has anyone actually asked: What is your job? Can you work around your treatment? Are you going to fall off your parents’ insurance? Are there opportunities for scholarships so we can help you succeed? These are all things we have to pay attention to so patients have their best chance at getting well.

It makes them feel like they’re not a number, and like what’s important to them is also important to their medical team. It’s important to take care of people as a whole, realize they have lives, and that other people are impacted by what they’re going through.

Q: Is there anything you think isn’t getting addressed with patients at this age?

A: There’s often no discussion of what survivorship looks like. This is a traumatic experience, whether it was short or long, hard or easy. For a lot of people, your support network gets larger when you get diagnosed with cancer, and then when you tell people you’re in remission, unintentionally a lot of that support network fades when you may still need it.

At the end-of-treatment visit, where we’re going over scans or results, I always make that visit a little longer. I talk to people about the longer time period between visits that’s about to happen, because that can be overwhelming. We talk about how to know what is okay and what they need to call us about. I always emphasize: “You’re not bothering us. Call us.” We have to personalize that and recognize that it’s a big transition.

Help begins here

From big questions about school and dating to dealing with difficult physical and mental changes, a blood cancer diagnosis makes growing up that much harder. Teens and young adults like the ones Dr. Rosenthal treats need all the support they can get—support that’s specific to their experiences.

The Leukemia & Lymphoma Society is here to help, with plenty of free resources to get started:

The LLS Scholarship for Blood Cancer Survivors
Nutrition consultations with registered dietitians who are trained in oncology
A Teen’s Guide to Everything Cancer (print or digital)

Fertility and Cancer Fact Sheet
HOW DO I? Video clips where cancer survivors and experts offer guidance on issues like mental health, exercising with cancer, and more
Young adult-focused episodes of The Bloodline, LLS’s podcast
Peer-to-peer support giving patients the chance to talk to someone with a similar diagnosis or experience

If you’re a young person facing blood cancer, you're not alone. Learn more about Dr. Rosenthal’s experience in her own words, or reach out to LLS today.

Be a part of someone's story.

Donate to LLS

LLS Races to Get Faster Care for Children with Cancer with Accelerating Kids’ Access to Care Act

wilsonb — Thu, 07 Mar 2024 14:56:17 +0000

LLS Races to Get Faster Care for Children with Cancer with Accelerating Kids’ Access to Care Act wilsonb Thu, 03/07/2024 - 09:56 Brianna Wilson, Director of Advocacy Communications at LLS March 7, 2024

The Leukemia & Lymphoma Society is dedicated to helping find cures for pediatric blood cancers. But we—and pediatric families across the country—know all too well that even the best treatments are ineffective if the patients who need them most are not able to access them.

That’s why LLS is currently championing the bipartisan Accelerating Kids’ Access to Care Act (AKACA), a bill that would reduce the paperwork required of doctors treating children from out-of-state—and get children the care they need faster, without delays.

Unfortunately, when kids with cancer need specialized care, they often must travel outside their home state. But doing so can require bureaucratic steps that cause dangerous delays in treatment. That’s especially true for the 50% of kids covered by Medicaid or the Children’s Health Insurance Program.

“This legislation will be a lifeline for families across the country facing childhood cancer,” said E. Anders Kolb, MD, President and CEO of The Leukemia & Lymphoma Society. “By streamlining the Medicaid provider screening and enrollment process, we'll spare families the anguish of needless treatment delays at a time when every day counts.”

LLS has been championing the legislation since 2021—and our efforts are paying off. Last week, the bill received a hearing in the U.S. House of Representatives House Energy and Commerce Health Subcommittee. Securing a hearing—where lawmakers debate the bill and hear from experts about its merits—is a key step to helping the bill become a law.

During the hearing, Congresswoman Mariannette Miller-Meeks—one of the bill’s sponsors— shared an LLS-led community support letter, demonstrating that 215 organizations endorse the bill. Dr. Alex Bassuk, MD, PhD, physician-in-Chief for University of Iowa Stead Family Children’s Hospital shared more about how patients and families are negatively impacted by the status quo.

LLS has utilized several other tactics to promote AKACA, including:

Helping secure leading lawmakers in the U.S. House of Representatives to introduce the bill.
Hosting three in-person events—2023 spring lobby day, the Dare to Dream Summit, and the Alliance for Childhood Cancer Action Days—where attendees have urged lawmakers to co-sponsor the legislation. To date, the bill has 72 cosponsors in the U.S. House of Representatives and 35 in the Senate.
Sending action alerts to patient advocates so that they can contact their representatives quickly and solicit cosponsors. So far, advocates have sent thousands of letters to their representatives about this key legislation.

How you can help

Sign up to become an LLS advocate here, and we’ll let you know when we need you to send an important message to your members of Congress about access to pediatric cancer care or other issues that impact blood cancer patients.
Learn more about how LLS’s Office of Public Policy is supporting The Dare to Dream Project and tackling childhood cancer. Our childhood cancer brief identifies four major challenges in pediatric cancer and shares how LLS is working to combat each one.

Understanding Myeloma: A Quick Guide

meixelk — Fri, 01 Mar 2024 13:30:00 +0000

Understanding Myeloma: A Quick Guide meixelk Fri, 03/01/2024 - 08:30

Myeloma is a rare blood cancer

Let’s address the elephant in the room. Myeloma is not a skin cancer—that’s melanoma. And it’s not a bone cancer—although it can affect the bones. It’s actually one of more than 100 types of blood cancers, and in 2023 alone, approximately 35,730 cases of myeloma were expected to be diagnosed. With an estimated 157,561 people in the United States currently living with or in remission from myeloma, we know there’s an urgent need to share resources and find a cure.

Myeloma is a cancer that forms in a type of white blood cells called plasma cells. These plasma cells become abnormal and multiply, and if untreated, continue to grow and build up in the bone marrow, crowding out healthy blood cells. This can:

Weaken the immune system
Raise protein levels in the blood and urine, which can lead to kidney damage
Cause build up in bone, causing it to weaken, which can lead to bone pain and fractures
Result in death

In most myeloma patients, the disease is in multiple places in the body at the time of diagnosis. Because of that, it's often called multiple myeloma or symptomatic myeloma. 

Myeloma is treatable but not curable

In many cases, myeloma is a chronic condition. It’s hard to measure the mental and emotional toll living with it takes on patients, survivors, caregivers, and families. There can be periods of remission (when the cancer is not detectible) and periods of relapse (when the cancer returns). As one survivor said about his multiple myeloma: “It’s not ‘if,’ it’s ‘when’ it comes back.” Maintaining mental health is as important as physical health, so having the advice and support of peers and experts can be a huge help.

The good news? There’s hope. Medical advances and new myeloma treatments have improved myeloma survival rates dramatically, and more are being developed every year.

The five-year relative survival increased from 24% in 1975 to 60% by 2018.
The 3-year survival rate as of Jan 1, 2019, was 69% for all races and ethnicities.

Five myeloma “myths”

1. Myeloma can break your bones. TRUE.
This disease weakens your bones, making them easy to break.

2. You can have myeloma and not know it. TRUE.
In early stages you might not have any symptoms, or they may be so mild that you brush them off—symptoms like weakness, fatigue, frequent infections, changes in urination frequency, loss of appetite or weight, thirst, or even a broken bone. This is called smoldering myeloma.

3. Myeloma only happens to older people. FALSE.
Most people who develop myeloma are over 60, but myeloma can also occur in younger people.

4. Once diagnosed, your dreams and future are on hold. FALSE.
Myeloma can often be treated and controlled, and, because of medical advances, many survivors are living longer lives.

5. There’s a racial and age gap among myeloma patients and survivors. TRUE.
While anyone can be diagnosed with myeloma, it occurs most often in people over 60, more males than females, and Black Americans are twice as likely to be diagnosed with myeloma as white Americans.

What’s important to remember is that there’s a broad spectrum of symptoms, disease progression is different for everyone, and—thanks to science—there’s always hope.

LLS is here for myeloma patients & caregivers

Research

LLS is a leader in myeloma-related research, investing $51.5 million across 51 research grants in our current myeloma portfolio. In fact, LLS supported 2 out of the 3 myeloma drugs the FDA approved in 2023. And we’re just getting started, looking at myeloma from all angles. Our funding is helping to identify specific genes that cause myeloma and new ways to treat them, developing new ways to arm a patient’s own immune system to keep their myeloma in check, and even studying the role of certain gastrointestinal bacteria in myeloma. It may be possible that by eradicating certain bacteria from their guts, we can stop people with a myeloma precursor condition from developing full-blown myeloma at all.

“With the number of new therapies and supportive methods to treat myeloma rapidly increasing, the hope is we can increase the duration of disease control for even more patients and get them to cures in the future.” - Lee Greenberger, LLS Chief Scientific Officer

Education & Support

LLS is committed to advocating for and providing access to care for every myeloma patient. As Black Americans are at twice the risk for myeloma as white Americans, we created Myeloma Link to increase access to education and treatment for myeloma in Black American communities. And we encourage Healthcare professionals to refer their myeloma patients to LLS for the additional information and resources they need.

And we make FREE information, education, and support accessible to patients, survivors, and caregivers—whether it’s through a phone call, online chats, a webcast or podcast, or our website (including a myeloma-specific booklet and guide for patients and caregivers).

Here are a few additional places to get started:

Personalized support from Information Specialists, highly trained oncology social workers and nurses, who will listen to your concerns, answer your questions, and assist through treatment, financial and social challenges 
Accessing clinical trials with Nurse Navigators, who will speak to you about clinical trials and other treatment options specific to your unique situation, and personally guide you or your loved one through the entire clinical trial process
Nutrition consultations with our registered dietitians who provide oncology nutrition education

If you’ve been touched by myeloma, you’ve got us—for dedicated myeloma research, resources, and support. And with your help, we can keep discovering more and better myeloma treatments and help even more patients and survivors.

The Leukemia & Lymphoma Society

Helping Survivors Lead Longer Better Lives

parlapie — Mon, 26 Feb 2024 18:29:24 +0000

Helping Survivors Lead Longer Better Lives parlapie Mon, 02/26/2024 - 13:29

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, M.D., Chief Medical Officer February 26, 2024

Join our mission.

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.

Three Ways My Connection to Cancer Reveals the Importance of DEI & Health Equity

meixelk — Thu, 22 Feb 2024 19:35:17 +0000

Three Ways My Connection to Cancer Reveals the Importance of DEI & Health Equity meixelk Thu, 02/22/2024 - 14:35

Cancer has touched my life in immense ways.

Many of my loved ones would still be here today if it weren’t for various cancers taking them before their time. As a member of the Black community, I am reminded that these loved ones might still be alive if it weren’t for the color of their skin or their socioeconomic circumstances. The heartbreaking reality is anyone can be diagnosed with cancer—but not everyone can get the care they need.

While we have come a long way in making treatment more accessible, we still have work to do to address health disparities within the blood cancer community, which often disproportionately impact racial and ethnic minoritized groups, rural communities, and other underserved populations.

We at The Leukemia & Lymphoma Society (LLS) believe everyone deserves equitable access to the care they need when they need it. This belief is at the heart of our Health Equity work as well as our culture of Diversity, Equity & Inclusion (DEI) that enables it.

Here are three ways my personal connection to cancer not only fuels my passion for what I do, but also reinforces the critical role our DEI and Health Equity efforts play in creating necessary change.

1. Treatment Accessibility is Not a Given

Cancer robbed me of my father, a hardworking husband and dad who always put his family first. He was diagnosed with lung cancer in March of 1995 and was gone by July of the same year.

The fact that my dad’s cancer took him so quickly was devastating, but it’s not quite as heart wrenching as the reason it did: he chose to forgo treatment because of the financial burden it would put on our family. As a middle-class household with five children, we were faced with a decision that unfortunately many families dealing with cancer face. Ultimately, we lost my dad because treatment was not financially accessible to us.

At LLS, we are advocating for policies like Medicaid expansion and protections for people facing medical debt, because we believe patients, including those with low incomes or disabilities, should never be blocked from life-saving treatment. In 2023 alone, we helped to expand Medicaid coverage in North Carolina, South Dakota, and New Hampshire. Additionally, we successfully defeated federal proposals that would have made nearly 2 million people with low incomes ineligible for Medicaid coverage.

Our work continues, but we remain committed to a future in which the size of your paycheck or the color of your skin has no impact on the quality of your care.

2. Lack of Trust Worsens Outcomes

I lost my brother, Kurt, to throat cancer in 2008. At the time of his death, I was unaware, as I’m sure he was, that throat cancers disproportionately affect Black men more than any other demographic. I’ve also come to learn that throat cancers can be very curable when caught early.

My brother, like many men in the Black community, avoided preventative care—like regular doctor visits—that could have caught his cancer in its early stages.

Unfortunately, a history of people of color being ignored or misdiagnosed has resulted in a mistrust in medical science and the healthcare system among some in the Black community. I truly believe that if my brother had been seeing a doctor on an annual basis, he would not have lost his life.

At LLS, we’re working to reverse this mistrust and educate communities of color or otherwise underserved communities disproportionately impacted by certain blood cancers. We empower communities through nationally recognized programs like Myeloma Link, started in 2017 to focus on connecting with Black and African American communities, and our Latino and Hispanic Outreach Program, which began in 2020. These priority initiatives aim to build relationships in underserved populations, raise awareness of blood cancers and LLS, and ensure patients and their families are connected to resources and timely, state-of-the-art treatment, including clinical trials.

We’ve also prioritized fostering internal environments where individuals from diverse backgrounds, identities and abilities experience a sense of belonging. We recognize that to gain the trust of all patients and families and to provide them with the best support, our staff and volunteers must reflect the diverse perspectives and backgrounds of the communities we serve.

With more than 70% of our employees participating in one of our ten Employee Resource Groups (ERGs), we not only cultivate belonging, but we enable and elevate the voices of these groups to influence where policies can be more inclusive. This culture of inclusion and influence helps us attract and retain diverse employees and reach – and develop trust among – as many communities as possible.

3. Representation Matters

When I joined LLS in 2020, I was impressed with how DEI and Health Equity were already baked into so much of the mission. I knew I wanted to be part of a place that recognized the importance of not only diversity but representation, which ensures that all viewpoints are depicted and valued in an organization.

Representation matters in healthcare, too. Because of my personal experiences with cancer, I’ll admit I’ve had my own skepticism toward the healthcare system. The fact is, I’m nearly 60 years old, and I’ve never had a doctor that looks like me.

But LLS is working to change that through programs like our Underrepresented Medical Student Research Program, which invests in the next generation of physician scientists helping to pioneer a better understanding of blood cancers in all people. The goal of this program is to promote representation of all types of people to enhance the quality of research, reinforce credibility among underserved populations, and provide the best possible outcomes for all patients.

It's been years since I lost my dad and my brother, but I think about them often and their memory fuels my passion for what I do. I am proud to work for an organization that’s taking so many steps to ensure all blood cancer patients have access to the life-saving care they deserve. By prioritizing and embedding DEI into everything we do and advancing Health Equity for all, we get a little closer every day to realizing our vision of a world without blood cancer.

Susan Goss-Brown, Chief DEI Officer, SVP Territory Leadership

Donate now to contribute to our life-saving mission.

ABOUT THE AUTHOR

Susan Goss-Brown is a progressive leader with more than 20 years of experience in global retail and nonprofit sectors. At LLS, she champions diversity, equity, and inclusion (DEI) principles, integrating them into territory operations and across the organization.

With a background spanning Athleta, Banana Republic, and Gap brands, she spearheaded several DEI programs including launching ASCEND, an initiative to develop talent and advance diversity, and she was an 8-year member of the Corporate Diversity Council and Executive Sponsor for the African American Network Group and the Color Proud Council. In her role as President of the Gap Foundation, she was responsible for evolving Gap Inc.’s workforce development program, developing and launching their employee financial assistance program, and working with national partners to open-source P.A.C.E., a global supply chain initiative for women. Committed to ongoing community engagement, she sat on the Advisory Board for the Center for Equity, Gender & Leadership (EGAL) at the Haas Business School at Berkeley from 2018-2020 and is currently Board Chair for a national youth-serving nonprofit, CollegeSpring.

She is the Founder of the Empowering Pathways Giving Circle, which raises funds for minority-led nonprofit organizations working to advance equity in health, financial inclusion, and K-12+ education.

Recognized for her leadership, she received the Liz Wiseman Group 2015 "Multiplier of the Year" award, which honors leaders for using emotional intelligence to amplify the smarts and capabilities of their teams.