Cancer is disruptive at any age. When you鈥檙e a young adult with cancer, a lot might go into 鈥減ause鈥� 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鈥攋ust to name a few.
Talk about a lot to take in.
But we鈥檝e made a lot of progress in making these processes easier for people with cancer and their families. The Leukemia & Lymphoma Society (青云体育) 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鈥攖o make sure that people aren鈥檛 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. about the ACA and healthcare reform.)
For Abby Singh, a cancer survivor and 青云体育鈥檚 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鈥檚 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鈥檙e 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 鈥渃yst鈥� 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 鈥渇ootprint鈥� 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鈥檛 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鈥� health insurance until age 26 years. I was able to stay on my dad鈥檚 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鈥檛 understand what I was going through, and I didn鈥檛 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鈥檛 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鈥�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 鈥渕arketplace鈥�). 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鈥檚 plan, I purchased health insurance on my state鈥檚 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鈥檛 get health insurance from their employers鈥攊ncluding low-income families, farmers, and millions of Americans with pre-existing conditions鈥攖hanks to enhanced tax credits that reduce the cost of monthly health insurance payments (or 鈥減remiums鈥�) 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鈥攁nd millions will lose their health coverage.
For information about the Health Insurance Marketplace, visit , 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鈥檝e 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鈥擨nsurance 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鈥擨nsurance 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鈥擨nsurance companies can鈥檛 set annual or lifetime limits (caps) on how much they鈥檒l 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鈥擨nsurance companies can鈥檛 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鈥擴nder the ACA, states have the option to expand 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鈥攂oth for survival and quality of life. AYAs benefit from all the protections listed above, and there鈥檚 also a provision of the ACA that helps AYAs specifically鈥擠ependent Care Expansion (DCE). This provision allows young adults to remain on their parents鈥� 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鈥檚 insurance plan, I didn鈥檛 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鈥攕upporting 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 published in October 2024 shows that after passage of the ACA, survival rates improved for young adults with cancer. Specifically, young adults aged 19鈥�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鈥檓 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鈥攇oing 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) , 34 percent of YA patients (ages 18鈥�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鈥攊ncluding copays, travel, time away from work, and others鈥攃an 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鈥檛 either. It鈥檚 very isolating. I didn鈥檛 know anyone my age with cancer when I was first diagnosed, but now I鈥檓 proud to be part of the welcoming AYA cancer community!
Connect with other AYAs on 青云体育 Community, an online gathering place, or join the YAconnect: Young Adults Living with Blood Cancer online chat.
If you鈥檙e an AYA cancer survivor, you have support
青云体育 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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青云体育 can also connect you to financial assistance programs, including the 青云体育 Scholarship for Blood Cancer Survivors and medical debt case management.
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Through 青云体育 peer-to-peer volunteers young adult patients can talk to someone with similar experiences, matched specifically to them.
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Call an 青云体育 Information Specialist at (800) 955-4572 for more information on all of 青云体育鈥檚 offerings, as well as other organizations and programs that support AYAs.
How to get involved and help patients
The 青云体育 Office of Public Policy advocates on behalf of鈥攁nd with鈥攂lood 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鈥檒l 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.