2021 LLS Impact Report - Supporting Patients

TOBEN

leukemia survivor

JUDE

ALL survivor

SUPPORTING

SKYLAR

ALL survivor

PILAR

AML survivor

Patients

2021 IMPACT REPORT

MYRA

ROY

MEGAN

GREGORY

CHASE

VALERIE

TRISH

NATALIE

lymphoma survivor

lymphoma survivor

multiple myeloma survivor

AML survivor

leukemia survivor

NHL survivor

multiple myeloma survivor

AML survivor

BRAUER

LAUREL

CAYDEN

CHARLENE

CRUZ

NATHANIEL

ANGELA

LUCAS

Hodgkin's lymphoma survivor

multiple myeloma survivor

lymphoma survivor

AML survivor

ALL survivor

multiple myeloma survivor

CLL survivor

ALL survivor

T HANK YOU

Through your support of LLS, you touch the lives of blood cancer patients and bring hope to them and their families.

JULIE

BRUCE

THOMAS

LAURIE

MAGGIE

LILLY

LINCOLN

LORI

lymphoma survivor

Hodgkin's lymphoma survivor

mantle cell lymphoma survivor

multiple myeloma survivor

multiple myeloma survivor

leukemia survivor

lymphoma survivor

myelofibrosis survivor

Dear Friends, At The Leukemia & Lymphoma Society (LLS), we know that receiving a blood cancer diagnosis is utterly devastating. What may have looked like a clear path in life—going to school, raising a family, enjoying retirement—can become confusing, fraught with unexpected obstacles and unknown outcomes.

Helping patients and families navigate these challenges is at the center of all that we do.

Through a wide range of education, support and advocacy, LLS reaches patients across the country—in their communities and in their homes. Whether it be providing financial support to patients and families, educating health care providers, or bringing the patient’s voice to legislatures at the state and federal levels, LLS seeks to empower patients to live their fullest lives possible.

Your partnership fuels these programs.

This is why I am so proud to share with you LLS’s 2021 Patient Support Impact Report. In it, you will read about new and ongoing efforts to assist patients, families and health care providers in coping with blood cancer in today’s complex realities. While our nation and our world continues to experience unprecedented change and uncertainty, LLS remains resolute in our primary focus: to support patients as they navigate the challenges of blood cancer. Of course, the full breadth of how LLS supports blood cancer patients is more than can be detailed in any one report. By sharing individual stories and highlighting recent progress, this report provides snapshots of LLS’s distinctive efforts and your profound impact.

When we face uncertainty, it is often the friends who surround us that give us the courage to keep going.

You provide that friendship to patients and families who look to LLS for answers.

Thank you for all you do.

Gwen Nichols, MD Chief Medical Officer

PATIENTS ARE AT THE CENTER OF ALL WE DO

BOOKLETS

ACCESS

LOCAL FAMILY

SUPPORT GROUPS

NATIONAL & LOCAL TELECONFERENCES

REGIONAL LIVE EDUCATION PROGRAMMING

WEBSITE

PRINTED RESOURCES

WEBCASTS

BLOOD CANCER VIDEOS CONFERENCES PODCAST

PATIENT, CAREGIVER AND PROFESSIONAL

EDUCATION

TRISH GREENE BACK TO SCHOOL PROGRAM

CLINICAL TRIAL

SUPPORT CENTER

At the very heart of LLS are blood cancer patients, and the families, caregivers and health care providers that care for them.

SUPPORT FIRST CONNECTION PROGRAM

PATTI ROBINSON KAUFMANN ®

LLS HEALTH MANAGER APP ™

ONLINE

CHATS

LLS COMMUNITY

To help blood cancer patients navigate their journeys, LLS provides support, education, and services that empower patients to make confident decisions about treatment and care, and resources to help them access that care. And, we advocate for patients on the state and federal levels to eliminate the barriers patients face so they can keep moving forward with treatment, and with life.

These efforts are interconnected and reinforce each other. Advocacy efforts are informed by patient experiences, which in turn inform outreach, education and support efforts. Programs and services are continuously evaluated, adapted and enhanced based on feedback from patients, caregivers, and health care providers. New programs and innovations are introduced when a gap in support is identified that LLS can fill. And always, these programs are built on data and research that show us where the need is greatest, and how LLS can most effectively help patients.

2 | THE LEUKEMIA & LYMPHOMA SOCIETY

ASSISTANCE

TRAVEL

ASSISTANCE

PRE CAR T-CELL TRAVEL ASSISTANCE

MEDICAID ACCESS

NEED

CO-PAY ASSISTANCE

URGENT

FINANCIAL

SUPPORT

PEARL POINT NUTRITION SERVICES

SUPPORT

PERSONALIZED

TRIALS ACCESS AFFORDABLE & QUALITY PATIENT AID COVERAGE

ADVOCACY

With this patient-focused approach, we are dedicated to identifying needs and devising ways to meet those needs to ensure the best care possible.

ONE TO ONE

POLICY RESEARCH

INFORMATION

RESOURCE CENTER PATIENT & COMMUNITY HEALTH

OUTREACH SUPPORT

EQUITY

Although LLS’s patient support and advocacy programs are too broad and diverse to fully describe in one report, in any one year certain themes emerge, informed by the needs and opportunities of the times. In the following pages are highlights from our activities of 2021 along the following core themes, all of which center on the needs of blood cancer patients.

Advancing Health Equity: understanding and addressing the systemic and day-to-day obstacles faced by underserved patients Improving Access to Clinical Trials: bridging the gap between patients and leading-edge new treatments

Supporting Pediatric Patients: providing special resources for the unique needs of children and families Reducing Out-of-Pocket Costs: helping patients with the financial burden of treatment while advocating to address systemic imbalances and unfair practices

SUPPORTING PATIENTS • 2021 IMPACT REPORT | 3

LLS IS...

ELIGIBILITY FOR MEDICAID

varies from state to state, impacting access to care, especially for patients with very low income.

60% of those in the Medicaid coverage gap are racial and ethnic minority patients.

BLACK MULTIPLE MYELOMA PATIENTS

are significantly less likely than white patients to receive frontline autologous stem cell transplant.

10 YEAR SURVIVAL RATE

for multiple myeloma patients age 65-74 increased significantly more for white than black patients.

SURVIVORSHIP

is negatively impacted by financial hardship.

Too many blood cancer patients face challenges that prevent them from getting the treatments and care they need, and gaps in access to care exist along geographic, racial, cultural and socioeconomic lines. Guided by the fundamental belief that everyone deserves the best possible healthcare, LLS continues to intensify efforts on the state and national levels to bridge these gaps. In programs that span all aspects of our mission as well as collaborations with external organizations, an important aspect of this work is identifying and then addressing the obstacles that underserved groups face when diagnosed with a blood cancer.

While anyone can be impacted by blood cancer, not everyone has equal access to the care they need. We’re committed to ensuring public policies make it possible for all blood cancer patients to fully experience the benefits of health and wellbeing that result from quality healthcare.

Access to Healthcare LLS PLAYED A ROLE IN EXPANDING MEDICAID TO COVER

450K

ADDITIONAL PEOPLE IN MISSOURI AND OKLAHOMA

2 MILLION PEOPLE COULD BENEFIT FROM MEDICAID EXPANSION IN THE 12 STATES THAT HAVE FAILED TO DO SO. 60% ARE RACIAL AND ETHNIC MINORITY PATIENTS. WE ARE CONTINUING TO ADVOCATE FOR MEDICAID EXPANSION IN THOSE PLACES.

Diversity in Clinical Trials Advancing federal policies that will promote greater inclusion of those underrepresented in clinical trials:

Racial and Ethnic Minorities

Young Adults

Older Adults

Rural Communities

Everyone deserves to have the best odds of beating blood cancer—but the reality is some patients’ odds vary based on their ethnicity. A patient’s chance of finding a match ranges from 29% to 79%, depending on their ethnic background.

Patients are most likely to match with donors of the same ethnic background.

After his mother Nadia struggled to find a match for a bone marrow transplant, Yusuf Khan reached out to his state representative, Dr. Tom Oliverson, for help.

Nadia and Yusuf worked with LLS and other nonprofits to secure support for Oliverson’s legislation, which became law in 2021 and creates a bone marrow recruitment and public information campaign that aims to increase the number of registered donors, and in particular, registrants of color.

4 | THE LEUKEMIA & LYMPHOMA SOCIETY

LLS expanded efforts to understand the systemic barriers to care as well as reach patients, families, and health care providers to help them overcome these obstacles.

Outreach & Education Through national and local education and support programs, the Information Resource Center, the Clinical Trial Support Center, and our nutrition service, LLS connected one-on-one with people in underserved communities.

CONNECTED WITH MORE THAN

ASSISTED MORE THAN

BLACK AND HISPANIC PATIENTS

PATIENTS IN THE HIGHEST POVERTY RATE COUNTIES IN THE U.S.

26K

CONNECTED WITH MORE THAN 7,000 YOUNG ADULT PATIENTS AND MORE THAN

5K

ASSISTED NEARLY

10K

13K

PATIENTS IN RURAL AND SEMI-RURAL AREAS

PATIENTS 75 AND OLDER

Equity in Access Research Program To inform our support and policy advocacy activities, LLS launched a new grant-making research program to advance understanding of modifiable, underlying causes of inequitable access to care.

Financial obstacles to care are pervasive, most often affecting those in underserved communities.

IN 2021, LLS PROVIDED 42,000+ PATIENTS WITH MORE THAN

Supporting Access

$241 MILLION

Through the Patient Aid, Susan Lang Pay-It-Forward Travel and Urgent Need Programs, LLS assisted patients in:

55% 51% 19%

reside in medically underserved areas

78%

IN GRANT SUPPORT, A 70 PERCENT INCREASE OVER LAST YEAR.

OF ALL U.S. COUNTIES

Includes Co-Pay Program.

OF THE COUNTIES ACROSS THE U.S. WITH THE HIGHEST POVERTY RATES

report an annual income under $40,000

70%

are either disabled, retired or unemployed

Assistance, by Race, as Identified by Patient

64%

White

23%

Black / African American

12%

Hispanic / Latino

2%

Asian

1%

Native American

Excludes Co-Pay Program.

SUPPORTING PATIENTS • 2021 IMPACT REPORT | 5

LLS IS...

CANCER CLINICAL TRIAL

participation among Black patients is 8.7% and among Hispanic/Latino patients is 4.8%, but they make up 13.4% and 18.7% of the U.S. population.

Experimental therapies can offer patients hope while advancing treatment for all patients.

But the process of finding and enrolling in a clinical trial can be prohibitively complex.

In addition to expanding our one-of-a-kind Clinical Trial Support Center, we continue to add new educational resources for patients, provide financial support and advocate for patients at the state and federal level.

LLS is supporting policies that promote health equity within clinical trials.

Enabling Access ONLY ABOUT

Previous research has found that

TRANSPORTATION

was the largest out-of-pocket expense for patients during treatment weeks.

Some AML cancer patients pay more than

$1,680 IN PARKING

over the course of treatment.

5%

OF ADULT CANCER PATIENTS ENROLL IN A CLINICAL TRIAL

AT LEAST

1 IN 5

STUDIES FAIL TO REACH THEIR PATIENT RECRUITMENT TARGETS

A MAIN REASON PATIENTS DO NOT ENROLL IN CLINICAL TRIALS IS THAT THEY ARE

NOT OFFERED THE OPTION.

Racial and ethnic minority patients are underrepresented in trials, but when offered the option of a trial, they are just as likely to enroll as patients who are white.

With advocacy partners, LLS helped enact the Clinical Treatment Act requiring Medicaid to cover care received during a clinical trial

Increases clinical trial access

to 41M+ people,

including patients from racial and ethnic minority groups

5.8M

people in the U.S. delayed medical care because they did not have transportation.

Laurie Adami, a software executive, was diagnosed with an incurable form of non-Hodgkin lymphoma 16 years ago. She considers herself fortunate– as a Los Angeles resident, she had access to several of the world’s top cancer facilities and many clinical trials.

During the dozen years she continuously battled cancer, three of her seven treatments were clinical trials. She said those trials provided more targeted and effective treatments with fewer side effects than the already approved therapies offered to her. “If it weren’t for clinical trials, I wouldn’t be here,” Adami says.

“While trials didn’t result in complete remission until my seventh treatment, CAR T in clinical trial in 2018, they bought me time and enabled me to survive.”

Adami volunteers with LLS through the Patti Robinson Kaufmann First Connection® Program and as an advocate in the Office of Public Policy. She supports public policies that will make it easier for more patients to access trials – regardless of their background, income, or location. “In our country, it shouldn’t be about luck,” Adami says. “We have phenomenal treatments that are just getting better. But if only a small number of patients have access … how is that democratic or just?”

6 | THE LEUKEMIA & LYMPHOMA SOCIETY

LLS increased the capacity of its Clinical Trial Support Center (CTSC), a unique service staffed by highly trained oncology nurse navigators who provide personalized, patient-centered navigation to connect patients with appropriate clinical trials while addressing barriers to enrollment and educating them about clinical trials as a treatment option.

One-on-One Patient Access

21%

MORE THAN

1,000

NURSE NAVIGATORS INTERACTED WITH PATIENTS, CAREGIVERS AND HEALTHCARE PROVIDERS APPROXIMATELY

23 TIMES

OF PATIENTS ASSISTED

BY THE CTSC IN FY21 ENROLLED IN A TRIAL

PATIENTS ASSISTED IN FY21

PRIOR TO TRIAL ENROLLMENT

Transportation barriers are often cited by patients as an obstacle to accessing care. Through the Susan Lang Pay-It-Forward Travel Assistance program, LLS provides financial assistance to help with treatment-related transportation and lodging.

Supporting Access Provided nearly $2.9M in assistance to more than 4,950 patients through LLS transportation assistance

Launched in 2021, the Susan Lang Pay-It-Forward Pre CAR T-cell Therapy Travel Assistance program provided awards of $2,500 to 203 blood cancer patients who were being evaluated to receive CAR T-cell therapy as either standard treatment or a clinical trial.

The Susan Lang Pay-It-Forward Travel Assistance program provided assistance to patients in:

39%

of all U.S. counties

18%

reside in medically underserved areas

16%

of the most rural counties

70%

report an annual income of less than $40,000

34%

of the counties across the U.S. with the highest poverty levels

80%

are either disabled, retired or unemployed

Travel Assistance Patients Identify As:

67%

White

21%

Black / African American

11%

Hispanic / Latino

2%

Asian

1%

Native American / Native Alaskan

SUPPORTING PATIENTS • 2021 IMPACT REPORT | 7

LLS IS...

LEUKEMIA

is the most common cancer diagnosed in children and adolescents younger than 20 years.

THE SECOND LEADING CAUSE

of cancer deaths among children and adolescents younger than 20 years is Leukemia.

CHRONIC HEALTH CONDITIONS will impact at least 60% of childhood cancer survivors.

When it comes to coping with blood cancer treatment, children and adolescents, and their families and caregivers, have a wide range of unique needs and challenges which are unlike those of adults. As part of our comprehensive approach to transform childhood blood cancer treatment and care through The Dare to Dream Project (the next phase of the LLS Children’s Initiative), LLS is increasing development of new educational and support resources and is improving access to care through legislative advocacy.

Cancer kills more than 1,000 children in the U.S. each year — and even one death is too many. LLS is securing additional funding for research and research infrastructure focused on childhood cancers at the National Institutes of Health (NIH) and other federal agencies.

Advocating For Cures Efforts through National Institutes of Health (NIH):

SECURED FULL FUNDING:

$80M

FOR CHILDHOOD CANCER RESEARCH

Includes programs authorized by the STAR Act that can bring us closer to less toxic, more effective treatments that are designed specifically for children.

Jill Baral’s son Aaron was just 14-years-old when he was diagnosed with leukemia. Today — following three years of radiation, chemotherapy, and surgeries – he’s healthy. Jill knows her family is fortunate that Aaron’s treatment was successful. But she still fears for Aaron’s future.

Radiation targeted Aaron’s brain, and his chemotherapy can have long-term impacts on the heart. “That scares me,” Jill said. “I still worry.” That’s why Jill is a passionate advocate for more federal funding for pediatric cancer research. She knows that many of the treatments for childhood cancer are decades old and can seriously impact children as they grow. And she knows kids deserve better.

“The only way you get better treatments is through more research,” Jill says.

“We want better, and we can get better, if we have the kind of research that only a government can do.”

She says her experience advocating with LLS is empowering. “Cancer is something that took control away,” Jill said. “I want that control back.”

8 | THE LEUKEMIA & LYMPHOMA SOCIETY

In FY 21, additional pediatric-focused resources were developed including the "Caring for Kids & Adolescents with Blood Cancer" workbook, the LLS Coloring for Kids app and "Wiskurs" emotions flip book. This flip book provides 30 different illustrations that children can choose from to express their mood.

Educating & Supporting the Youngest MORE THAN

17K

BOOKLETS AND OTHER RESOURCES WERE DISTRIBUTED TO PEDIATRIC FAMILIES

ALMOST

PODCASTS, VIDEOS, AND EDUCATIONAL PROGRAMS CONTAINING PEDIATRIC CANCER INFORMATION WERE ACCESSED

700

12K+

FAMILIES AFFECTED BY A PEDIATRIC BLOOD CANCER DIAGNOSIS CONTACTED THE INFORMATION RESOURCE CENTER

TIMES

In FY21, LLS served 26% more pediatric, adolescent, and young adult patients through its Urgent Need Program than the prior year.

Pediatric Financial Assistance Portfolio

Urgent Need, Pediatric, Adolescents and Young Adult Patients Identify As:

PROVIDED

$2.3 MILLION

IN ASSISTANCE TO MORE THAN 4,950 PEDIATRIC PATIENTS

Of the 4,950 total patients assisted, 3,320 received assistance through the Urgent Need Program.

Financial assistance provided to patients:

35%

of all U.S. counties

29%

of all U.S. counties with the highest poverty levels

18%

reside in medically underserved areas

72%

report an annual household income of less than $40,000

59%

White

22%

Black / African American

22%

Hispanic / Latino

3%

Asian

1%

Native American / Native Alaskan

1%

Native Hawaiian / Pacific Islander

SUPPORTING PATIENTS • 2021 IMPACT REPORT | 9

LLS IS...

59%

of blood cancer patients with traditional Medicare do not begin active treatment within 3 months of diagnosis.

The high cost of care is a major barrier between too many patients and the treatment they need. Many blood cancers require intensive and long-term treatment. The cost of cancer care has been steadily rising, and patients are bearing more of the financial burden, paying increasingly larger portions out of their own pockets for their care.

LLS addresses immediate needs through direct financial assistance and is advocating for policy change to protect patients for the long-term.

Nobody should be forced to make the impossible choice between paying for their treatment and paying their bills.

3 IN 10

uninsured non-elderly adults said that they went without needed care in the past year because of cost.

46%

of cancer patients reduced spending on food and clothing.

42%

of cancer patients deplete their entire life's assets after two years of diagnosis.

Limiting Patients' Costs LLS continued to build bipartisan support in Congress for a policy that will cap the total annual out-of-pocket drug costs for Medicare Part D patients.

MANY MEDICARE PATIENTS SPEND

MET WITH MORE THAN

LAUNCHED DIGITAL MEDIA CAMPAIGN WITH

ANNUALLY ON THEIR SPECIALTY CANCER DRUGS

MEMBERS OF CONGRESS TO DISCUSS OUT-OF-POCKET COSTS

VIEWS CALLING ON LAWMAKERS TO CAP PART D OUT-OF-POCKET COSTS

$10K+

100

LLS played a critical role advocating for patients as regulators worked to implement the first federal law prohibiting healthcare providers from charging patients surprise medical bills.

3.6M+

An estimated 1 in 6 inpatient hospitalizations resulted in a surprise medical bill

At age 51, Sharon Clark was diagnosed with multiple myeloma, a cancer of the plasma cells. The first time she got a prescription filled through her Medicare coverage, she learned her oral treatment would cost her $2,000– for just a single month.

Eventually, Sharon had to forego that life-saving medication because the expense was just too much. “It’s hard enough navigating treatment,” Sharon says. “And on top of that, we have to wonder: how are we going to pay for lifesaving medication?”

Today, Sharon is a passionate advocate, working with LLS to push for a cap on Medicare patients’ out-of-pocket drug costs. Sharon is always willing to share her story with lawmakers in hopes of helping them understand just how expensive cancer can be.

Sharon’s advocacy isn’t just for herself – it’s for the thousands of other cancer patients who are facing the same struggle.

10 | THE LEUKEMIA & LYMPHOMA SOCIETY

Today, our financial assistance programs are making costly blood cancer care more accessible to patients who, in many other cases, would have no other way of obtaining treatment.

Financial Support for Patients Co-Pay Assistance Program AWARDED MORE THAN

$234M

IN GRANTS TO OVER 27,000 PATIENTS

MORE THAN

238,150 PATIENT CLAIMS PROCESSED

143,630

Co-Pay Assistance Patients Identify As:

72% of all

19% reside in medically

43% of the

55% report an

most rural counties

annual income of less than $40K

51% of the counties

18% report an

across the U.S. with the highest poverty rates

ARE DISABLED, RETIRED OR UNEMPLOYED

FINANCIAL ASSISTANCE CALLS HANDLED

Financial assistance provided to patients in:

U.S. counties

78%

MORE THAN

underserved areas

annual income of less than $20K

67%

White

12%

Black / African American

6%

Hispanic / Latino

1%

Asian

<1%

Native American / Native Alaskan

Urgent Need, Patient Aid and Susan Lang Pay-It-Forward Travel Assistance programs

$7M

in grants awarded to more than 15,300 patients

73%

report an annual income less than $40K*

Financial assistance provided to patients in:

55% of all

19% reside in medically

24% of the

69% are disabled,

U.S. counties

most rural counties

51% of the counties

across the U.S. with the highest poverty rates

Urgent Need, Patient Aid, and Susan Lang Pay-It-Forward Travel Assistance Patients Identify As:

64%

White

23%

Black / African American

12%

Hispanic / Latino

2%

Asian

1%

Native American / Native Alaskan

underserved areas*

retired or unemployed

41% report an

annual income of less than $20K

*Excludes Patient Aid Program.

SUPPORTING PATIENTS • 2021 IMPACT REPORT | 11

LLS IS ALWAYS...

Blood cancer patients need us now more than ever. With so much uncertainty in the world, LLS provides steadfast support to help patients and families meet the challenges of blood cancer diagnosis, treatment and survivorship. Through an array of resources, LLS gives guidance, education, and support—and importantly, hope—at every step. In addition, LLS is a powerful voice advocating for policies that ensure affordable, coordinated care and enabling patients to access promising new treatments. In this way, LLS keeps patients and families at the center of all we do.

Through the Office of Public Policy (OPP), LLS works to ensure our nation’s laws and rules help patients navigate and afford cancer care in the face of their pressing medical needs. We amplify the voices of patient advocates to ensure they’re heard when it matters most.

More than 200 volunteer advocacy leaders working on the ground in their state capitals and in Washington, D.C.

OPP expanded its network of volunteer advocacy committees working on the ground to a total of 21 states.

The LLS network of advocates is made up of more than 30,000 active online volunteers – patients, caregivers, friends and family members, and healthcare professionals, working tirelessly to secure the patient protections that have become more critical than ever to the health and well-being of blood cancer patients.

ADVOCATES SENT

ADVOCATES HELD

LETTERS TO MORE THAN 800 STATE AND FEDERAL LAWMAKERS IN 2021

MEETINGS WITH MEMBERS OF CONGRESS IN 2021

58,165

241

OVER THE PAST 10 YEARS, LLS HELPED ADVANCE ORAL PARITY LAWS IN

@LLSADVOCACY ORGANIC SOCIAL MEDIA POSTS HAD

1M

IMPRESSIONS

43 STATES

Our work policy and advocacy work has been covered by major news outlets including: AP

12 | THE LEUKEMIA & LYMPHOMA SOCIETY

STAT

Vox

The Washington Post

USA Today

Politico

Last year, Education & Services staff provided programs and services nationally, regionally, and locally around the country, as well as to patients outside the U.S. The expanded use of virtual programming enabled patients and caregivers who were ill, had difficulty traveling, and/or lived in rural areas or other countries to attend more education programs and get more connected to LLS services and other patients than ever before. None of this would have been possible without the help of dedicated volunteers, who were extremely generous with their time, expertise, and experience.

MORE THAN

12K

PATIENTS AND CAREGIVERS EDUCATED THROUGH LOCAL AND REGIONAL PROGRAMS

Nearly 1,800 peer-to-peer connections were made with patients/caregivers

EDUCATION & SERVICES STAFF CONNECTED WITH MORE THAN

76K

FAMILIES EFFECTED BY A BLOOD CANCER DIAGNOSIS

More than 18,000 individuals joined the online LLS Community

INFORMATION SPECIALISTS SPOKE TO PATIENTS AND CAREGIVERS IN MORE THAN

95

COUNTRIES

Nearly 1,000 patients/caregivers received a nutrition consultation by our registered dietitian

At the core of our patient and community outreach are more than 1,000 volunteers who gave more than 25,000 hours to serve patients

SUPPORTING PATIENTS • 2021 IMPACT REPORT | 13

At The Leukemia & Lymphoma Society (LLS), we are dedicated to alleviating the burdens felt by patients coping with blood cancer and we work to ensure that nobody is denied treatment because they cannot afford it. Our robust Patient Financial Assistance Programs help patients with cost-of-care obstacles in order to access the best, most timely treatment.

LLS's steadfast financial support for patients SUPPORTING NEARLY

328,625 PATIENTS

AWARDING NEARLY

$1.1 BILLION IN PATIENT GRANTS

Since program inception, LLS has awarded...

Co-Pay Assistance Program NEARLY

242,500 PATIENTS

Susan Lang Pay-It-Forward Travel Assistance Program NEARLY

$1B

IN GRANTS

33,050 PATIENTS

MORE THAN

$3.3M

IN ASSISTANCE

Urgent Need Program, Pediatric and Adolescent/Young Adult MORE THAN

7,820 PATIENTS

14 | THE LEUKEMIA & LYMPHOMA SOCIETY

MORE THAN

PATIENTS

IN ASSISTANCE

19,800

$10M

Urgent Need Program, Adult

Patient Aid Program MORE THAN

MORE THAN

MORE THAN

$3.9M

IN ASSISTANCE

MORE THAN

MORE THAN

PATIENTS

IN ASSISTANCE

6,050

$3M

Covid-19 Financial Assistance Program MORE THAN

19,388 PATIENTS

MORE THAN

$4.8M

IN ASSISTANCE

HELP US TURN BLACK TO RED LLS’s patient support programs reached patients or caregivers in 80% of U.S. counties.

County Reached County Not Reached

LLS’s patient support programs reached patients or caregivers in 65% of U.S. counties that either had the highest poverty rates or were among the most rural.

County Reached County Not Reached Not Applicable

Please note: Some high poverty counties reached that encompass major urban areas are not visible in the graphic due the geographic size of the counties.

These include, for example, the counties containing Bronx, NY; Philadelphia, PA; Baltimore, MD; St. Louis, MO; and Richmond, VA.

SUPPORTING PATIENTS • 2021 IMPACT REPORT | 15

REFERENCES Advancing Health Equity

Unger, J.M., Cook, E., Tai, E. & Bleyer, A. (2016). Role of Clinical Trial Participation in Cancer Research: Barriers, Evidence, and Strategies Joseph M. American Society of Clinical Oncology Education Book, 35: 185-198.

Derman, B.A., Jasielec, J., Langerman, S.S., Zhang, W., Jakubowiak, A.J., & Chiu, B.C.H. (2020). Racial differences in treatment and outcomes in multiple myeloma: a multiple myeloma research foundation analysis. Blood Cancer Journal, 10(8): 80.

Unger, J.M., Hershman, D.L., Till, C., Minasian, L.M., Osarogiagbon, R.U., Fleury, M.E., & Vaidya, R. (2021). “When offered to participate”: A systematic review and meta-analysis of patient agreement to participate in cancer clinical trials.

Journal of the National Cancer Institute, 113(3): 244-257.

Health Resources & Services Administration. Medically Underserved Areas.

Retrieved from: https://data.hrsa.gov/tools/shortage-area/mua-find Marinac, R., Ghobrial, I.M., Birmann, B.M., Soiffer, J., & Rebbeck, T.R. (2020).

Dissecting racial disparities in multiple myeloma. Blood Cancer Journal, 10: 90.

USDA Economic Research Service, U.S. Department of Agriculture, Rural-Urban Continuum Codes (2020). Retrieved from: https://www.ers.usda.gov/dataproducts/rural-urban-continuum-codes.aspx

U.S. Department of Commerce, Bureau of the Census, Small Area Income and Poverty Estimates Program. (2019) Retrieved from: https://www.ers.usda.gov/dataproducts/county-level-data-sets/download-data/

Wolfe, M.K., McDonald, N.C., Holmes, G.M. (2020, June). Transportation Barriers to Health Care in the United States: Findings From the National Health Interview Survey, Am J Public Health. 110(6): 815-822.

Improving Access to Clinical Trials

Supporting Pediatric Patients

Health Resources & Services Administration. Medically Underserved Areas.

Retrieved from: https://data.hrsa.gov/tools/shortage-area/mua-find

Health Resources & Services Administration. Medically Underserved Areas.

Retrieved from: https://data.hrsa.gov/tools/shortage-area/mua-find

Houts, P.S., Lipton, A., Harvey, H.A., Martin, B., Simmonds, M.A., Dixon, R.H., Longo, S., Andrews, T., Gordon, R.A., Meloy, J., Hoffman, S.L. (1984). Nonmedical Costs to Patients and Their Families Associated with Outpatient Chemotherapy.

ACS Journals, 53(11): 2388-2392

National Cancer Institute. (2022, March 31). Late Effects of Treatment for Childhood Cancer (PDQ®)–Health Professional Version. https://www.cancer.gov/types/ childhood-cancers/late-effects-hp-pdq#_990_toc.

Irukua, P., Gorosb, M., Gelfondb, J., Changc, J., Padeleckid, Mesa, R. & Kaklamanid, V.G. (2019). Developing a model to predict accrual to cancer clinical trials: Data from an NCI designated cancer center. Contemporary Clinical Trials Communications, 15: 1-6 Javier-DesLoges, J., Nelson, T.J., Murphy, J.D., McKay, R.R., Pan, E., Parsons, K., Kane, C.J., Kader, K., Derweesh, I.H., Nodora, J., Patel, S.P., Martinez, M.E., & Rose, B.S. (2021). Disparities and trends in the participation of minorities, women, and the elderly in breast, colorectal, lung, and prostate clinical trials.

Cancer, 128(4): 770-777.

Health Resources & Services Administration. Medically Underserved Areas.

Retrieved from: https://data.hrsa.gov/tools/shortage-area/mua-find

Schroen, A.T., Petroni, G.R., Wang, H., Gray, R., Wang, X.F., Cronin, W., Sargent, D.J., Benedetti, J., Wickerham, D.L., Djulbegovic, B. & Slingluff, C.L. (2010). Preliminary evaluation of factors associated with premature trial closure and feasibility of accrual benchmarks in phase III oncology trials. Clinical Trials, 7(4): 312–321.

U.S. Department of Commerce, Bureau of the Census, Small Area Income and Poverty Estimates Program. (2019) Retrieved from: https://www.ers.usda.gov/dataproducts/county-level-data-sets/download-data/

Through your involvement, you can make a real difference in the lives of patients across the country.

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16 | THE LEUKEMIA & LYMPHOMA SOCIETY

U.S. Department of Commerce, Bureau of the Census, Small Area Income and Poverty Estimates Program. (2019) Retrieved from: https://www.ers.usda.gov/dataproducts/county-level-data-sets/download-data/

Reducing Out-of-Pocket Costs

Kaiser Health News. (2021, May 17). ‘Kicking You When You’re Down’: Many Cancer Patients Pay Dearly for Parking. https://khn.org/news/article/kickingyou-when-youre-down-many-cancer-patients-pay-dearly-for-parking

MAKE AN IMPACT

The Leukemia & Lymphoma Society. (2021). Facts 2020-2021: Updated data on blood cancers. Retrieved from: https://www.lls.org/sites/default/files/2021-08/ PS80%20FactsBook_2020_2021_FINAL.pdf.

GIVE

The cost burden of blood cancer care in Medicare. Retrieved from https:// www.LLS.org/sites/default/files/National/USA/Pdf/Milliman-Cost-Of-BloodCancer-In-Medicare-20191016.pdf U.S. Department of Commerce, Bureau of the Census, Small Area Income and Poverty Estimates Program. (2019) Retrieved from: https://www.ers.usda.gov/dataproducts/county-level-data-sets/download-data/ USDA Economic Research Service, U.S. Department of Agriculture, Rural-Urban Continuum Codes (2020). Retrieved from: https://www.ers.usda.gov/dataproducts/rural-urban-continuum-codes.aspx

YOUR CONTRIBUTIONS MAKE THIS WORK POSSIBLE.

VOLUNTEER

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SUPPORTING PATIENTS • 2021 IMPACT REPORT | 17

HUDSON

ALL survivor

JULIAN

ALL survivor

KEITH

lymphoma survivor

LILA

AML survivor

3 International Drive, Suite 200, Rye Brook, NY 10573 • 914.949.5213 The mission of The Leukemia & Lymphoma Society (LLS) is to cure leukemia, lymphoma, Hodgkin’s disease and myeloma, and improve the quality of life of patients and their families. Find out more at www.LLS.org.

DANIELLE

HALEY

PENELOPE

MADDOX

HARPER

HALLEY

MICAH

CHRISTIAN

ALL survivor

ALL survivor

hodgkins lymphoma survivor

lymphoma survivor

leukemia survivor

Caregiver, wife ALL

ALL survivor

leukemia survivor

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