Cancer is disruptive at any age. When you’re a young adult with cancer, a lot might go into “pause” mode: relationships and dating, your education, your career goals.
And on top of all this, you have to navigate your healthcare coverage while you seek treatment. That could mean finding providers who are in-network, affording treatment and prescriptions, and figuring out what parts of your treatment insurance will cover—just to name a few.
Talk about a lot to take in.
But we’ve made a lot of progress in making these processes easier for people with cancer and their families. The Leukemia & Lymphoma Society (LLS) works hard to advocate for laws that protect patients and caregivers.
One such life-changing law? The Affordable Care Act (known as the ACA).
What is the ACA?
In 2010, the passing of the Patient Protection and Affordable Care Act (ACA) sparked major reforms in many parts of our health insurance system. The law expanded access to high-quality, affordable health insurance through the marketplaces, offered tax credits to help make healthcare more affordable, and expanded access to important services like preventive care. The ACA also enacted protections for patients—to make sure that people aren’t penalized for having a pre-existing condition, like cancer.
(Note: The ACA is the law in the United States and the consumer protections it created still exist. Learn more about the ACA and healthcare reform.)
For Abby Singh, a cancer survivor and LLS’s Director of Patient Programs and Content, the ACA was a lifesaving resource when she got her diagnosis.
Here, Abby shares some of her experiences as a young adult with cancer, and someone who’s benefited greatly from the ACA.
Table of Contents:
- Being a young adult cancer survivor as a student
- Who are adolescent and young adult (AYA) cancer survivors?
- What is the Health Insurance Marketplace?
- What benefits and protections does the ACA provide?
- How do AYA cancer survivors benefit from the ACA?
- What other challenges do AYAs with cancer experience?
- If you’re an AYA cancer survivor, you have resources
- How to get involved and help patients
- Related resources
Being a young adult cancer survivor as a student
In 2011, I was in my final year of college, living with a sorority sister and looking forward to graduation and all that the future had in store. I went home over Thanksgiving break for a minor surgery. I recovered quickly and came back to campus for finals. As I was walking into a Brit Lit final, I got a call that would changed my life. The “cyst” that the surgeon removed during the surgery was actually a cancerous tumor, and I needed to come in as soon as possible.
My new oncologist recommended a second surgery to remove the “footprint” of the first surgery, followed by radiation therapy and immunotherapy. My prognosis was good, but the treatments were astronomically expensive. I was a student, and with treatment looming, finding a job wasn’t an option.
Luckily, the Affordable Care Act (ACA) had been passed the year before in 2010. A part of the ACA allows young people to remain on their parents’ health insurance until age 26 years. I was able to stay on my dad’s health insurance and receive life-saving care!
Although I am very thankful that I was able to receive care and that my dad was able to support me, when I was going through treatment, I felt alone. My peers couldn’t understand what I was going through, and I didn’t have the energy to be social or go out like a typical college student. And I felt like cancer derailed all my post-graduation plans.
After meeting with a social worker at the hospital, I learned that I wasn’t alone. I belong to a (totally awesome) group called Adolescent and Young Adult (AYA) cancer survivors.
Who are young adult and adolescent (AYA) cancer survivors?
Young adults and adolescent cancer survivors are between ages 15–39. An estimated 175,665 adolescents and young adults in this age range in the U.S. are living with or in remission from a blood cancer.1 AYA cancer survivors face challenges specific or more common to their age group. (More on this later!)
What is the Health Insurance Marketplace?
People can buy health insurance coverage through healthcare.gov or state-based exchanges (generally referred to as the “marketplace”). Policies sold on the Marketplaces put a cap on annual out-of-pocket costs and provide a minimum level of essential health benefits. Essential health benefits include preventive care, emergency services, pregnancy care, mental health care, prescription drugs and more. Eligible individuals can also get help paying for their health insurance coverage through tax credits.
I graduated college in the middle of cancer treatment. I was hospitalized soon after due to side effects of my treatment. As you can imagine, this affected my job search. (Health insurance through an employer is the most common type of health insurance coverage in the US.)2 Once I was able, I did part-time work. Then I worked for a very small organization that did not offer health insurance. Once I aged out of my dad’s plan, I purchased health insurance on my state’s Health Insurance Marketplace! I was able to continue follow-up care with my oncologist without interruption.
For 15 years now, millions of people like me with pre-existing conditions (including blood cancer) have relied on the marketplace for coverage of treatments, prescription drugs, and other types of care. This year, premiums were more affordable for families who don’t get health insurance from their employers—including low-income families, farmers, and millions of Americans with pre-existing conditions—thanks to enhanced tax credits that reduce the cost of monthly health insurance payments (or “premiums”) for those buying health insurance using Healthcare.gov.
Those tax credits help more people to afford high-quality coverage. But unless Congress acts soon, the enhanced tax credits will expire—and millions will lose their health coverage.
For information about the Health Insurance Marketplace, visit www.healthcare.gov, go to "Get Coverage," and select your state.
What benefits and protections does the ACA provide?
The ACA prohibits insurance companies from engaging in discriminatory practices. Believe it or not, these practices were common before the ACA. Without these protections, it would’ve been harder for me to access and afford my cancer treatment (like it was, for a long time, for many patients).
Some of the benefits and protections of the ACA include:
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Limits on insurance cancellations—Insurance companies cannot cancel your policy unless you commit fraud, intentionally lied on your application, or you stop paying your premiums.
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Protections for people with pre-existing conditions—Insurance companies selling coverage through the marketplace cannot discriminate against you due to pre-existing medical conditions like cancer.
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No annual or lifetime limits—Insurance companies can’t set annual or lifetime limits (caps) on how much they’ll pay for the benefits that are covered by your plan. You may still be responsible for paying a portion of the cost of your care.
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Protections for clinical trial participants—Insurance companies can’t limit or drop coverage if you choose to participate in a clinical trial, including cancer clinical trials. The ACA requires most insurance companies to cover routine costs (doctor visits, blood tests, scans, etc.) for people who participate in an eligible clinical trial.
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Medicaid expansion—Under the ACA, states have the option to expand Medicaid programs to cover people with low incomes. However, some states have chosen not to expand their Medicaid programs.
How do AYA cancer survivors benefit from the ACA?
As for all cancer patients, health insurance and access to care are essential for young adults diagnosed with cancer—both for survival and quality of life. AYAs benefit from all the protections listed above, and there’s also a provision of the ACA that helps AYAs specifically—Dependent Care Expansion (DCE). This provision allows young adults to remain on their parents’ health insurance plan until they turn 26 years old, regardless of whether they are still living at home, attending school, or are married. This is the one that helped me the most! By staying on my dad’s insurance plan, I didn’t have to worry about losing coverage for my treatment or follow-up care. I also had some breathing room once I finished treatment to rest, heal, and figure out what to do next. I finished school and found a job I am passionate about—supporting other cancer survivors.
Not only am I not alone as a YA cancer survivor, but I am also not alone in benefiting from the DCE. A study published in October 2024 shows that after passage of the ACA, survival rates improved for young adults with cancer. Specifically, young adults aged 19–25 who were eligible for DCE showed improvements in both cancer survival and death rate trends beginning in 2010, the year the ACA was passed.3
What other challenges do AYAs with cancer experience?
Once again, I’m not alone in my experience! It often takes AYA patients longer to be diagnosed, delaying care.4 Other challenges that AYAs face are largely related to the things many people do in their young adult years—going to school, starting a career, dating, starting a family, or parenting young children. Cancer impacts all of these.
In the National Coalition for Cancer Survivorship (NCCN) 2024 State of Survivorship Survey, 34 percent of YA patients (ages 18–39) reported delaying a major life event, such as marriage, a trip, or starting a family, compared to 9 percent of all surveyed.5 Since most young adults are just beginning their careers, the financial burden of a cancer diagnosis can be huge. Even with health insurance, the expenses of cancer treatment—including copays, travel, time away from work, and others—can contribute to financial hardship. According to the NCCN survey, 90 percent of these YA patients reported being financially impacted by cancer, compared to 44 percent of all surveyed.
Mental health can also be a challenge for AYAs. In the survey, 57 percent reported experiencing depression, anxiety, or mental health symptoms. AYAs may have never experienced a serious illness or medical event, and many of their friends haven’t either. It’s very isolating. I didn’t know anyone my age with cancer when I was first diagnosed, but now I’m proud to be part of the welcoming AYA cancer community!
Connect with other AYAs on LLS Community, an online gathering place, or join the YAconnect: Young Adults Living with Blood Cancer online chat.
If you’re an AYA cancer survivor, you have support
LLS is here to help AYA cancer patients and their families with a variety of resources and support services.
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Our Information Specialists, highly trained oncology social workers and nurses, can provide trusted, accurate information and support. They can connect you with our Clinical Trial Nurse Navigators and Registered Dietitians.
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LLS can also connect you to financial assistance programs, including the LLS Scholarship for Blood Cancer Survivors and medical debt case management.
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Through LLS peer-to-peer volunteers young adult patients can talk to someone with similar experiences, matched specifically to them.
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Call an LLS Information Specialist at (800) 955-4572 for more information on all of LLS’s offerings, as well as other organizations and programs that support AYAs.
How to get involved and help patients
Become an advocate with LLS! The LLS Office of Public Policy advocates on behalf of—and with—blood cancer patients and their families to create change that will address the serious burden of blood cancer. Cancer patients need meaningful health insurance coverage. Policymakers must take steps to ensure cancer patients have access to quality, affordable insurance that meets these standards.
As an advocate, you’ll serve as a voice for blood cancer patients, providing policymakers with the information and inspiration they need to improve access to care for all patients. Sign up to become an advocate.