The Oklahoma Brain Tumor Foundation for more than 10 years has been assisting families who are dealing with this devastating illness.
Director Nancy Thomason is all too familiar with the challenges they are facing. She made it her mission to provide support for others after her infant son succumbed from his own battle with cancer.
“We are the only organization that provides the services that we do with the focus on brain tumor families,” said Thomason. “We work not just with the patient, but with the caregivers and family members.”
The organization provides help with prescription medications that can be lifesaving and assists them to get approved for Social Security Insurance Disability benefits to provide financial sustainability for their families.
“We are able to help secure financial help for them; financial assistance grants and other things,” said Thomason.
It also provides mental health advocacy and navigation services for the federal government’s health care marketplace, said Thomason.
“Most advocacy organizations aren’t providing direct patient services for cancer patients,” said Thomason.
There is also a need to help the patients communicate or understand what their doctors are saying. Sometimes they don’t feel empowered to ask questions or get second opinions, she said.
“We are able to take these families and make sure they have access to make informed choice regarding their care,” said Thomason.
“The most vulnerable among us don’t have access to the health care that they need and because so many times the families may be on Medicaid or uninsured, those are the families that are at a disadvantage income-wise,” said Thomason.
Patient navigators at the organization help those in need to improve their quality of life and ability to survive the disease. They work side by side with physicians to make sure patients have the support that they need.
“When you have an advocate it improves their ability to survive the disease,” said Thomason. “There’s not a cure for brain tumors, so we are hoping to buy them some time. We are able to help them get into a clinical trial. They may live an additional six months or a year, then another trial that the cancer may respond to. We have been able to help our patients live more years.”