Our vision is when Glioblastoma Multiforme (GBM) and other advanced brain tumor patients and their families can focus on care, treatment, recovery, and quality of life instead of medical expenses.
What We Do and Why We Do it
We support young adults (ages 18-50) with a GBM or an advanced brain tumor diagnosis and their immediate families that meet the eligibility criteria for financial assistance (400% of the national poverty level in the United States). However, financial literacy and empowerment resources are available for all touched by an advanced brain tumor diagnosis.
According to the National Cancer Institute, Glioblastoma Multiforme (GBM)* represents the highest per-patient initial cost of care and ongoing care. Advanced brain tumor patients require a complex treatment plan that typically includes brain surgery, radiation, and specialty medicine.
Often, the prescriptions for the treatment of both GBM and symptom/care management fall in non-generic or hospital-administered drug therapy (IV administration) that is costly or not covered by insurance. Because there are so few medical treatment options, many are experimental and not covered by insurance companies - leaving patients to pay out of pocket or rely on clinical trials. Unknown to many patients, Clinical Trials often have unexpected costs, too.
A brain tumor prognosis is devastating at any age, but young people under age 50 tend to seek more treatment options, live longer and accrue more medical bills. Due to the nature of brain cancer, patients often have to see multiple specialists (physical therapy, occupational therapy, speech therapy, epilepsy specialists, psychiatry, and counseling to name a few) with higher co-pays. As a result, GBM patients are often in ongoing treatment requiring large bills over multiple years, hitting their maximum out-of-pocket costs numerous times, all while experiencing loss of wages due to disability or inability to work, as well as unpaid time off for treatment.
The cost of cancer, including brain cancer, does not affect all patients equally. According to the American Cancer Society, younger adults (ages 18-50) experience the highest levels of financial hardship as they are likely to have less in savings, retirement funds, and assets. Due to these deficits, younger adults are more likely to worry about monthly bills, housing, childcare expenses, and food security. Additionally, younger people are more likely to have high deductible insurance plans.
Despite the high cost of care for young GBM patients and the devastating financial, emotional, and physical impact, few resources support this community with financial assistance and support.
Financial hardships in cancer patients may lead to worse healthcare outcomes, such as increased symptoms, lower quality of life, less satisfaction with care and higher risk of dying. The entire family of the patients is impacted, with caregivers and children experiencing a lower quality of life and sacrificing their own expenses such as healthcare needs. Providing this financial assistance will not eliminate financial hardship, it can help alleviate some of the short-term and long-term hardships.
*In 2020, the WHO created a new tumor grading system.
Our goal is to raise funds annually to support our mission:
Distribute financial aid
Develop supportive resources
Financial hardships in cancer patients may lead to worse health outcomes, such as increased symptoms, lower quality of life, less satisfaction with care, and higher risk of dying. In addition, the patient's entire family suffers, with caregivers and children also experiencing a lower quality of life and sacrificing their expenses, such as healthcare. While providing grant funding will not eliminate all financial hardship, it can help alleviate some short-term and long-term distress and potentially lead to better outcomes.
The GBM and advanced brain tumor experience often comes on swiftly and leaves little room for preparation, leaving the care partner and family scrambling to learn the healthcare system and billing processes. Empowering the patient and their family early in diagnosis with financial resources, such as budgeting worksheets, topics to discuss with their provider, other free/low-cost nonprofit resources, and financial literacy/health insurance navigation training, can not only alleviate the financial hardship in the short-term but allow the family to plan for upcoming expenses. Patients and their families may then understand their family budget and make short-term decisions that can potentially lead to better financial outcomes for the patient and their families in the long run.