Financial Assistance for Patients Needing Genetic Testing
Approximately 5-10% of cancers have been linked to an inherited gene, higher in some specific types of cancer. Genetic testing can help people understand their risk for cancer, help them make medical decisions, and take steps to lower their cancer risk or detect cancer early. If done when cancer is already diagnosed, genetic testing helps make informed decisions on the most effective course of treatment.
For some patients, genetic counseling may not be covered by insurance, making the out-of-pocket expense a service they cannot afford. We also know many patients have high deductible plans or no insurance at all and this creates a financial barrier. The cost of cancer genetic testing ranges from $300 - $5,000 depending on the test. Most labs offer a sliding scale fee for non-insured patients or those financially challenged.
Additionally, a consultation with a genetic counselor to gather background to determine what tests are needed and then to discuss the results and implications of those results is an additional cost, usually $150 to $250. This fee is always out of pocket because as of current, genetic counseling is not a service covered by Medicare/insurance as genetic counselors are not seen as practitioners. (There is a proposed bill in legislation to change this, but it’s not the case today.)
In July 2021, the June E. Nylen Cancer Center (JENCC) started a new program for our genetic counseling and testing services. We have formed a new partnership with the Munroe-Meyer Institute for Genetics and Rehabilitation (MMI), a non-profit university-affiliated program with the University of Nebraska Medical Center (UNMC). We are contracting the services of a designated board-certified, licensed genetic counselor and a genetic counseling associate through MMI to provide virtual genetic counseling and testing with our patients a day each week. We piloted with just breast cancer patients, but this month have expanded to all cancer types. The next phase is to open up to patients’ family members – so completed cancer genetic counseling/testing pre-diagnosis which is a complete shift in our practice. This means we can truly impact preventing cancer.
As we increase the amount of genetic counseling and testing, we know we will have more patients that will need financial assistance. According to a 2019 study and article by Baylor University Medical Center, Barriers to the Utilization of Genetic Testing and Genetic Counseling in Patients with Suspected Hereditary Breast and Ovarian Cancers, “Financial barriers exist for cancer patients who need genetic counseling/testing nationally; however, funding assistance programs may be the best way to obtain correct testing for patients unable to afford out-of-pocket costs.”
Numerous additional studies also state findings related to financial constraints creating barriers to study participants proceeding with genetic testing and counseling, or if they completed those steps, moving forward with preventative measures based on results (additional screenings, preventative surgeries, medications, etc.).
Contributions to JENCC through the Siouxland Big Give will go to a designated fund to offer financial assistance to our patients who would benefit from genetic counseling and testing but cannot afford the cost. Our established genetic counseling/testing fee is $150, and it is due upfront. This fee is the all-inclusive cost for the consultation, testing, and follow-up session with the certified genetic counselor if the patient has positive results for hereditary cancer to discuss the results and implications of those results. If testing shows the patient is negative for hereditary cancer, the patient and our oncologist are sent the results and a follow-up session with the genetic counselor is not needed.
For every $150 raised through Siouxland Big Give, we can ensure one patient who could not afford the fee on their own and who would not have moved forward with the genetic counseling and testing if they had to cover the expense, will receive this valuable and often life-saving service. Our goal is to raise $1,500 to ensure 10 patients can receive this financial assistance.
Thank you for considering support of this new cutting-edge program at our Cancer Center. You truly can help expand our mission of providing the highest quality, compassionate care through prevention, treatment, and research. We appreciate your investment in our organization, in our programs and services, and in the patients we care for.