How Can Patients Advocate for Genetic Testing?

How Can Patients Advocate for Genetic Testing?

How Can Patients Advocate for Genetic Testing? from Patient Empowerment Network on Vimeo.

How can chronic lymphocytic leukemia (CLL) patients ensure they are getting the appropriate genetic testing? Dr. Danielle Brander shares resources and advice to help patients become informed and empowered to ask questions and advocate for better care. Want to Learn More? Download the CLL Genetic Testing Resource Guide here.

Dr. Danielle Brander is Director of the CLL and Lymphoma Clinical Research Program at Duke Cancer Institute. Learn more about Dr. Brander.

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Dr. Brander:

Patients and their caregivers can advocate for testing by having the information at hand as you meet with your oncology team. There are some tests that are very helpful around the time of diagnosis, especially the FISH test. We talked about how the FISH helps give information about what to expect and what treatment selections to use moving forward, but often these FISH panels also include testing to almost double check and exclude that there’s different type of lymphoma other than CLL present.

So all patients should have FISH at the time of diagnosis regardless of whether they need treatment or not.

There are many good resources online. The NCCN or the National Comprehensive Cancer Network has a guide for not just the treatment but also the diagnosis and initial testing that is helpful for CLL. And there’s a guide for physicians and other oncology team members. And then there’s also a patient-specific guide, and many of these markers are included in that guide and are helpful information that can be brought to the office and also can be helpful supporting information if there’s a concern about insurance coverage.

Another way to advocate would be, in addition to having the resources at hand, is asking what the approval might be for the testing in terms of insurance. And there might be supplemental information that your team or the patient, or their caregivers themselves can provide from these resources that’ll make sure that the testing is covered for patients.