The American Kidney Fund (AKF) recently launched a new campaign, “Answers Unlocked,” to encourage genetic testing for patients with chronic kidney disease. This initiative expands on previous efforts that include a continuing medical education (CME) course supporting clinicians treating genetic kidney diseases.

One in seven American adults live with kidney disease, and though diabetes and high blood pressure are the leading causes, there is a link to a genetic change or variant in one in five cases of kidney disease. According to an American Kidney Fund survey, healthcare professionals estimate up to 15% of people with kidney disease do not know the cause of their kidney disease.

MedCentral spoke to Shahzia Lakhani, CRNP, senior director of clinical education for AKF, about their recent initiatives on genetic kidney disorders.

Answers Unlocked: The Benefits of Genetic Testing

What are the goals of the Answers Unlocked campaign, and how do you envision it impacting individuals with kidney disease?

Lakhani: Answers Unlocked aims to raise awareness of genetic testing options for determining the cause of kidney disease and the benefits of genetic testing. It will also provide information about the availability of genetic tests, how tests are performed, and options for insurance coverage. We hope that this information will empower people to talk to their doctor about getting a genetic test or seek access to a genetic counselor and get treatment plans that are tailored to their specific type of kidney disease.

Why is there a need to increase awareness about the role of genetic testing in kidney disease, including to debunk misconceptions?

Lakhani: Genetic testing can help people with undiagnosed or misdiagnosed causes of kidney disease ensure they are getting the best treatments or most appropriate medicines for their disease, which can help slow down the progression of kidney disease. This in turn can help people avoid kidney failure, for which the only treatments are dialysis or a kidney transplant.

Knowing that one’s kidney disease is genetic can also have a positive mental health impact on patients who are managing the emotional toll of living with kidney disease, empowering them and helping them understand that their kidney disease was not the result of anything they did.

Knowing the cause of a patient’s kidney disease is also helpful before a patient receives a transplant. Some forms of kidney disease will reoccur in the transplanted kidney, which can be devastating to patients who may feel it was their fault for losing the transplant when really it was due to the type of kidney disease they had.

How often is genetic testing covered by a patient’s insurance?

Lakhani: In many cases, insurance will cover genetic testing if there is a diagnosis or a family history of kidney disease. However, not all insurance companies recognize genetic counselors as healthcare providers – including Medicare.

It’s important to note that genetic tests that are part of a clinical trial process are usually free to the patient.

What about concerns over discrimination?

Lakhani: Yes, some people may worry that undergoing genetic testing might result in genetic discrimination, when an employer or insurance company treats them differently because they have a genetic mutation that causes or raises their chance of a disease. However, there are laws to protect people from genetic discrimination like the federal Genetic Information Nondiscrimination Act (GINA), which prohibits insurance companies from denying coverage or charging more based on genetic test results and from asking individuals or their family members to undergo genetic testing.

GINA also prohibits employers (with more than 15 employees) from discriminating based on genetic test results, so they can’t use the results to influence decisions about hiring or promoting someone.

After testing, how can physicians integrate the information into their treatment plans?

Lakhani: The first step is [for patients] to review the results with their doctor and/or a genetic counselor to make sure they understand what the results mean. After that, there are several next steps that a doctor or genetic counselor may recommend, including starting new treatments or medicines, joining clinical trials for their disease, or talking to their family about the results so they can consider testing. Alternatively, if the results of the test are inconclusive, a doctor or genetic counselor may recommend additional tests or screenings to find answers.

Healthcare professionals who want to best help their patients can learn more about the genetic forms of kidney disease, understand when genetic testing should be considered, and stay up to date on the latest treatments, drug approvals and clinical trials for genetic kidney diseases. Healthcare providers can also assist patients by keeping a list of genetic counselors in their area that they can refer patients to.

It’s worth noting that mastery and understanding of nephrology referrals increased from less than 5% prior to completion of our CME course on genetic testing to more than 30% after completion.

What other resources do you recommend?

Lakhani: AKF has several resources to keep primary care physicians informed, including CME activities, professional webinars, and guides for healthcare professionals.

Additionally, although not directly part of the Answers Unlocked campaign, the American Kidney Fund (AKF) and AKF Ambassadors are advocating for legislation called The Access to Genetic Counselor Services Act of 2023 (H.R. 3876/S. 2323). This bill will ensure that Medicare recognizes genetic counselors as healthcare providers, enabling them to be reimbursed directly by Medicare and giving Medicare beneficiaries greater access to genetic counselors’ services.