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Clinical Trials and Insurance Issues
Once you've identified a clinical trial you may want to join, you'll need to consider how your care will be paid for. Insurance coverage for clinical trials varies depending on the treatment, the insurance company and the health insurance policy. The study sponsor may cover some of the clinical trial costs. Most studies provide the drug or treatment free of charge. Other costs may or may not be covered by health insurance plans.
Austin
Four were spoken that day. Four crushing, breathtaking words, “Your son has cancer.” My world, my life, and my dreams for my son’s future suddenly halted while the rest of the world kept going on around us on May 14, 2011. Only days before, I was deciding what theme to have for his third birthday party and what outfit he would wear for his pictures. Days later, my husband and I were signing consents for the specific protocol of poison that would be pumped into Austin and having to digest the laundry list of possible side effects.
Kent
When Noah was born in 2005, we were surprised when the doctor told us he had Down syndrome. Soon after, we were informed about all of the things that Noah wouldn’t or couldn’t do in his lifetime. We were also given a laundry list of medical problems that he could potentially have. Two months after he was born, Noah went into heart failure and had open heart surgery to correct four holes in his heart. This was a tough time but boy did we have more to come and didn’t know it. He has since had multiple surgeries, tests, studies, etc. We were told that Noa
Nicolas
My name is Nicolas and I am 14 years old. Before my diagnosis I was a completely healthy child, in fact I was rarely ever sick. I played baseball, had straight A’s, and recently had recently got a new puppy. This sense of normalcy came to a screeching halt on January 13, 2018. That’s the day I was admitted into the pediatric ICU and the day I first heard the words, “you have cancer.” My family and I were devastated.
Chloe
At the age of 13, I became the youngest stem cell donor at Johns Hopkins Hospital. At 15, I am a Student Visionary of the Year in the 2024 Leukemia and Lymphoma Society (LLS) campaign. LLS has become an integral part of my life over the past two years. In the spring of 2022, the peaceful life of our family was shattered by my mom’s diagnosis of acute myeloid leukemia (AML). Learning that a stem cell transplant was the only cure, I volunteered to donate my bone marrow to her.
Jelien
Jelien started showing signs in early July of 2018. She had bruises and cuts that were taking too long to heal. In November, she kept spiking fevers with no other symptoms, and the doctor suggested giving her Motrin and switching to Tylenol. In December, during her well visit, Jelien’s bloodwork came back with slightly low counts, but her hemoglobin was too low. She was admitted to the hospital for a day for observation, and her counts were recovering. She had a follow-up and was cleared.
Elissa
Ten years ago, my mother-in-law was diagnosed with stage 4 non-Hodgkin lymphoma (NHL). She has since been deemed cured and has had no recurrence since her successful treatment. Some of her medicines were funded by The Leukemia & Lymphoma Society (LLS). We spent years racing for Team In Training (TNT) to fundraise for LLS.
Justin
In March 2012, when Justin was in the sixth grade, he started to rapidly lose weight, was experiencing extreme exhaustion and night sweats. After multiple visits to the doctor but no answers, his parents finally took him to the hospital for more intensive testing, including a bone marrow biopsy. One day later they received the shocking diagnosis: acute lymphoblastic leukemia.
Lisa
It was 2009. Obama had just been sworn in as president, captain Sully successfully landed United Airlines flight 1549 on the Hudson River during an aircraft malfunction, and all souls on board survived.
Thomas
I had bariatric surgery on May 11, 2022. At the time, I weighed just under 600 pounds, and I understood that there was a higher possibility for complications. My three-hour procedure turned into a six-hour procedure, and my overnight stay in the hospital turned into a week. During surgery, they discovered my spleen was significantly larger than normal, and in the days following my surgery, I kept losing blood. After two exploratory surgeries, four units of blood, and a trip to the ICU later, I was finally released from the hospital with no confirmed cause of bleeding.
Funeral Planning
A funeral or memorial service can help you cope after the loss of a loved one. In the early days of grief, navigating the practical issues that arise after death may feel overwhelming. Your loved one may have left instructions for you, or the decisions may be up to you or another family member. Many people may not be aware of the cost of funeral planning or the options available to families. Even if you do not plan to hold a traditional funeral, certain decisions still need to be made.
Stephanie and Amy
Stephanie: My journey with blood cancer began long before my diagnosis. In 2006, my world was shattered when my mom, just 52 years old, was diagnosed with acute myeloid leukemia (AML). She was quickly isolated in a specialized hospital, enduring grueling rounds of chemotherapy. I was about to start nursing school and desperately tried to educate myself on her illness, knowing deep down that the prognosis was grim. They mentioned a bone marrow transplant, but she never made it that far. A fungal pneumonia took her from us in December 2006.
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
Caregiver Support
Am I A Caregiver?If you’re providing regular assistance, you are a caregiver. Your loved one may only need support occasionally, or your loved one may need constant care. The kind of support needed will be different for each person and may also change over time. But if you're consistently providing care, you are a caregiver.
Here are just a few examples of caregiver tasks: