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by Joy Larden Haidle

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Joy Larsen Haidle

The COVID-19 pandemic brought many changes to the delivery of health care. In the effort to minimize exposure risks for patients and medical staff, routine health care rapidly pivoted to telehealth services. Providers attempted to stay connected to their patients over telephone or video visits. For some services, such as genetic counseling, telehealth consults worked well and helped expand access to genetic specialty services in rural and underserved areas. Genetic counselors also learned that patients in metro areas appreciate the flexibility of telehealth consults to reduce time away from work or home while still being able to take care of themselves.

At the beginning of the pandemic, shortages of personal protective equipment led to many medical specialties pausing services and contributed to reduced access to cancer screenings. As supplies became more reliable, cancer screenings such as mammograms and colonoscopies became easier to access. Many people continued to put off their cancer screenings, however, over fear of exposure to COVID-19.

While many people believe the incidence of cancer decreased in 2020, the reality is that cancer incidence didn’t change — there were just fewer people screened in 2020. As we moved into 2021 and began to catch up on the backlog of cancer screenings, the incidence of cancer appeared to have increased. What we were actually seeing, however, was diagnosis of those who should have been diagnosed in 2020 plus those diagnosed in 2021. Early data already suggests that more people were diagnosed with higher stage cancer in 2021 compared to 2019 due to the delay of screenings that may have identified the cancer earlier. Those diagnosed were also often unable to benefit from risk-reduction surgery, as these surgeries were deemed elective and thus were not offered during the height of the pandemic. It will take a long time to catch up from the impact of the COVID-19 pandemic on cancer detection and staging.

Genetic counseling and President Biden’s Cancer Moonshot Initiative

The announcement earlier this year regarding President Biden’s reignited Cancer Moonshot Initiative highlights the importance of reducing barriers to cancer screening and treatment access. Genetic counselors share this vision and appreciate the President’s Cancer Panel recommendation that the U.S. Congress allow the Centers for Medicare & Medicaid Services (CMS) to recognize genetic counselors as health care providers. Genetic counselors have specialized training in medical genetics and counseling. Our job is to help explain complicated medical and genetic information in a meaningful and understandable way, in order to help patients and their families benefit from precision medicine. We help tailor cancer screening and surveillance to personal and family histories and determine if someone would benefit from genetic testing. Genetic risk assessment with a genetic counselor can help patients and their physicians learn the optimal age to start surveillance and can inform the frequency and type of surveillance based on the pattern of cancers in a family history or based on a gene mutation.

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During the course of the pandemic, genetic counselors rapidly pivoted to provide genetic risk assessment via telehealth rather than the traditional in-person model. This pivot helped people in rural and underserved locations access specialty services without needing to travel. Telehealth services helped to reduce issues with access to care, as appointments could be done over the telephone or via computer, and testing could be completed using a saliva sample obtained at home. Telehealth services also helped family members participate in appointments and allowed them to benefit from a patient’s risk assessment.

Disparities still exist in access to genetic counselor services, because Medicare does not recognize genetic counselors. This creates several barriers. Medicare patients do not have direct access to genetic counselors in the same way that patients with commercial health insurance do. Medicare can’t reimburse genetic counselors, and many commercial payers follow Medicare reimbursement policy.

Therefore, cancer consultations and risk assessment are often done by health care providers other than genetic counselors. These doctors, nurses or other health care providers are skilled in their own areas of expertise, but often have limited genetics training or none at all.  Many people who would have benefited from meeting with a genetic counselor do not have access to them, or they don’t have insurance coverage, and so they go without genetic counseling services.

Looking toward policies that expand access to care

Many health plans also require genetic counseling prior to paying for genetic testing. The Cancer Panel has recommended doing away with pre-test requirements. Genetic counselors are a part of the health care team and should be recognized providers under Medicare to benefit the health of the population. Improved access and reimbursement will allow more individuals to take advantage of the innovation around screenings, such as genetic testing.

The COVID-19 pandemic demonstrated the impact on the population when cancer screening is reduced and highlighted the importance of reducing barriers for all communities to accessing cancer screening, treatment and specialty services. Genetic counselors play a key role in identifying those at increased risk of developing cancer, individuals who may benefit from tailored cancer surveillance and options for risk reduction. The information genetic counselors provide to individuals can then be shared throughout an individual’s family to take steps to help reduce the cancer incidence in those families and communities. For the health care dollars spent, genetic counselors can help improve the health of the population, but only if we reduce access barriers so that a larger number of people can benefit from risk assessments and conversations with genetic counseling experts.

We have more work to do to recover from the impacts of the pandemic. We must learn from these experiences to create opportunities that reduce the incidence of cancer and facilitate screening, the use of appropriate genetic testing and genetic counseling in ways that make a meaningful difference in our communities. If you want additional information about genetic counseling services, you can find a certified genetic counselor at

Learn how you can support policy efforts to expand access to genetic counselors by asking CMS to recognize genetic counselors as healthcare professionals here:


Joy Larsen Haidle, MS, CGC is a past-president of the National Society of Genetic Counselors and a genetic counselor at the North Memorial Health Cancer Center in Minneapolis.

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