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The Cost of Cancer Care and its Impact on Patients
LLS is on the frontlines of the battle against blood cancers, and we are alarmed by the stories that patients and their families are sharing with us about their struggles to access affordable, high-quality and stable care. Last year, our free Information Resource Center received more than 26,000 calls from patients and families – the majority included concerns about financial stress and difficulties accessing treatment.
Helping Blood Cancer Patients and Caregivers Navigate the Financial Impact of COVID-19
The coronavirus (COVID-19) pandemic has been a challenging time for us all. It is especially so for cancer patients and survivors, who are at greater risk of getting sicker if they become infected with the virus because they might be immunocompromised.
Other Financial Assistance
LLS is part of the Cancer Financial Assistance Coalition (C-FAC), which helps cancer patients manage their financial challenges by:
- Helping members communicate and collaborate
- Educating patients and providers about resources and links to other organizations that provide information about C-FAC's resources
- Advocating for cancer patients regarding the financial burdens of cancer care
Striving for Social Justice, Racial Equality and Diversity
As a patient focused organization, we stand for:
- All cancer patients, working to ensure they have access to quality affordable care.
- Racial justice and equality for Black people.
- Diversity and inclusion among our staff and volunteers.
We stand against hate, prejudice and injustice.
Luis
I used to donate blood at least three times a year. I did it as a way of helping others and never realized it would one day lead to me being diagnosed with myelodysplastic syndrome. But that’s exactly what happened in 2006, when a case of anemia kept me from donating blood that year.
Chris
In 2008, my primary doctor noticed that my white blood cells were high (12,000 range) and referred me to a hematologist. The hematologist decided to "wait and see" for a while. From 2008 to 2018, we watched as my white cells slowly grew from 12,000 to 207,000. The oncologist then prescribed and 8-hour infusion of Rituxan. As I sat in the recliner chair with needle in arm, I got several violent reactions from the Rituxan and they pulled out the needle. The doctor told me that I needed a drug called Imbruvica (Ibutrinib). I was told it was very expensive, and I was left to my own devices.
Laura
I was diagnosed with stage 4 mantle cell lymphoma (MCL) in December 2020, but at the time, it was considered to be "indolent." That quickly changed in late February 2021 when I experienced intussusception, a painful telescoping of the bowel into itself requiring hospitalization. A colonoscopy revealed a 7 cm. mass of the cecum, and the biopsy showed that it was MCL. I was discharged from the hospital with the agreement that I would come back a week later and start chemo/immunotherapy.
LLS Services and Support
Does LLS offer any financial assistance? LLS has a Co-Pay Assistance Program that offers financial support towards the cost of insurance co-payments and/or insurance premium costs for prescription drugs. Patients must qualify both medically and financially for this program. Visit our Financial Matters webpage for more information about financial assistance resources.Questions & Answers
What is the health insurance marketplace, and how do I know if I am eligible for coverage?The health insurance marketplace – sometimes referred to as the health insurance exchange – is where consumers can purchase health insurance plans that comply with the patient protections in the Affordable Care Act.
Finances and Insurance Coverage
Healthcare costs are a key concern for most people with blood cancer. Many patients don't have health insurance, and for others, coverage is limited. If you have health insurance, it's essential that you know what your plan covers and how to maintain your benefits.
Where to Start
You and your family will need to decide how to pay for treatment while managing household finances. You probably also need to consider additional indirect costs, such as lost time from work, childcare and travel expenses.
Kay and David LaFrance
As an 18-year breast cancer survivor, Kay was just starting to enjoy retirement in 2018 when she was diagnosed with mantle cell lymphoma. Even though she had fought cancer before, she was stricken with despair and disbelief and felt terrified of the road ahead of her. She had to travel to a different city to receive her specialized treatment, which was outside of her insurance network, so much of the costs came out of her own pocket. After a long, hard fight, she is now in remission, but lives with the everyday fear of her cancer coming back.
Jim & Leslie
Jim and Leslie Donigan have been married for almost 50 years. Currently retired with three adult children, they have both faced a cancer diagnosis, but are in remission today.
In October of 2003, Leslie was diagnosed with a stomach cancer called GIST (Gastrointestinal Stromal Tumors) and was told it was terminal. But then her doctor tried a medication intended for blood cancer—and it worked.
Madeline
I was diagnosed with acute myeloid leukemia (AML) in June of 2022. I was feeling fine and went for a routine physical where it was discovered that my white blood cell count was very low. This was the beginning of my nightmare. I was slotted to give my husband my kidney before I was diagnosed and had to quickly find another donor. We did and he got his transplant and is doing well. I was hospitalized for 8 weeks where I received very aggressive induction chemo that left me malnourished and on death’s doorstep.
Louise
During the last week of July 2019, Louise, then-two-and-a-half-year-old, developed unusual red dots on her chest and some gnarly, yet explainable, bruises all over her body. We chalked the rash up to wearing an unwashed shirt and the bruises to being an extremely active two-year-old. Then, after her gums bled one afternoon, we hopped on Google and became increasingly concerned with the search results. However, Louise wasn’t acting “sick,” so her parents ignored Dr. Google’s diagnosis.
The Affordable Care Act (ACA)
The Affordable Care Act’s Patient ProtectionsThe Affordable Care Act requires health insurance plans sold through www.healthcare.gov and its state-based marketplaces to comply with a number of requirements. Many of these – including the ones described below – are meant to ensure that patients have access to meaningful health insurance coverage. It’s important to be aware that some health plans, available today through non-governmental sites, may not include these patient protections.
Paul & Lynn
In 2017, after 44 years of working in the railroad industry, Paul Sauter was just starting to enjoy his retirement, when his health started to decline out of nowhere. Typically, he was in extremely good shape and enjoyed long hikes with his wife, Lynn. One day, while on a mountain climb trip in Arizona, Lynn was concerned when she noticed Paul was not his usual athletic self. When he was unable to get out of bed because of severe back pain, she knew something wasn’t right.
Teresa
It took two months for the doctors to take my illness seriously. I was suffering from hip and leg pain, but the doctors thought it was caused by the sports I was playing in high school. They would send me home with pain medication.
Gwendolyn
Gwendolyn describes herself as a wanderlust who never likes to let the grass grow under her feet. After college, she moved from her hometown in Florida to Houston and spent the next few years moving around Texas for work. She started her new life in Texas where her son, Sterling, was born and raised. She loves traveling, but following a trip to Belize, she started to notice white spots on her skin and other strange issues happening with her health. After doing some research on her own and going to the doctors, she was told she likely had lupus.
Amanda
I am now a two-time acute myeloid leukemia (AML) survivor. When I was diagnosed with AML, it was an absolute complete shock. At the time of my diagnosis, I was a stay-at-home mom to my then three-year-old son. In a matter of a few hours and three words, “You have cancer,” my life completely turned upside down.
