Stand Up for Access to Independent Genetic Counseling Services by Supporting S.1450 / H.R.2144 – the Access to Genetic Counselor Services Act of 2021

Hello Genetic Support Foundation friends, followers and family!

Genetic counseling services are not yet recognized for reimbursement by Medicare. As genetic technology expands and holds promise to improve health for all people, Medicare recognition is perhaps the single most important action to be taken that could ensure people have access to independent genetic counseling services. I am calling on all of you to please reach out to your elected representatives to show your support of the Access to Genetic Counselor Services Act. H.R. 2144 and S.1450 would provide coverage under Medicare for genetic counseling services that are furnished by genetic counselors.  These bills have been introduced with bipartisan support.

Below is the letter that I have sent to my representatives. I encourage all of you to please reach out to your senators and congressional representatives to ask them to support this very important legislation. We have drafted letters here that you can easily modify and send to your senators and representatives.

Thank you!
Katie Stoll

I am writing to request your support of the Access to Genetic Counselor Services Act, H.R.2144 and S.1450. I am a board-certified and licensed genetic counselor, residing in the state of Washington. I completed a rigorous master’s degree program in genetic counseling and was board certified after sitting for a board exam in 2005 alongside other genetic counselors and physician geneticist colleagues. For the past 20 years, I have had the privilege of meeting with      individuals who have concerns about a genetic condition or susceptibility in their family. They share deeply personal and important information with me about their health and family history. They seek information about their risk, guidance on genetic testing, and support in understanding how to make sense of what a genetic diagnosis means for them and for their family.

In Washington State, most private insurances and our state Medicaid program recognize and pay for genetic counseling services. This is not the case in many states where Medicaid does not cover genetic counseling . However, many of the patients who seek genetic counseling services, either by referral from their doctor or through their own questioning, have Medicare for their insurance. Medicare does not include genetic counselors as healthcare professionals that can be reimbursed.

But the fact that Medicare does not reimburse for genetic counseling service significantly limits access to services by many who could benefit. It also contributes to much of the waste, fraud and abuse currently happening in the world of clinical genetics .

Per Medicare guidelines, genetic counseling given by a cancer genetics professional, independent of laboratory, is recommended to be performed before and after genetic testing for hereditary cancer for analysis of genes such as BRCA1 and BRCA2. Genetic testing is paid for by Medicare when certain criteria are met and reimbursed to testing laboratories at more than $2,000 per test. Unfortunately, genetic counseling provided by those best qualified to provide pre- and post test genetic counseling board-certified genetic counselors is not reimbursed under Medicare at all. 

The oncologists, surgeons and primary care providers that I have worked alongside for many years look to me and my genetic counselor colleagues to provide information, counseling and guidance about genetic testing to patients and their families when it comes to hereditary cancer risk. We find ourselves in a bind every time one of these patients has Medicare for insurance. For compliant billing practice, I have seen many hospitals and clinics develop elaborate work arounds, including financial assistance programs, in which charitable donations pay for genetic counseling services for patients who have Medicare or other insurance that will not cover the service for those who meet certain financial criteria. For those who don’t meet this criteria, or don’t wish to apply for financial assistance, they must pay out of pocket for genetic counseling or forgo the service. 

On an individual level, this is unfortunate, as it means that people often don’t receive the support and care they need to adjust to information about genetic risk in their family. They may not be informed about the importance of this information for their relatives, which would enable those who are at high risk to take steps towards earlier detection of cancer, when it is most treatable, or even steps towards prevention of developing cancer in the first place. They may not have support in adjusting to what this information means for their own personal health. I know these gaps in care are occurring every day in clinics throughout the country.

But the fact that Medicare doesn’t recognize independent genetic counseling is also encouraging waste, fraud and abuse in genetic testing on a grand scale. Two years ago, the The Department of Justice, Criminal Division, together with the U.S. Department of Health and Human Services, Office of the Inspector General and FBI announced an investigation and subsequent prosecution called Operation Double Helix in which 35 defendants were charged with Medicare fraud related to genetic testing for cancer risk.

At that time, there was over $2.1 billion in losses from fraudulent charges for cancer genetic tests for Medicare beneficiaries. Despite the success of Operation Double Helix, fraud in the area of genetic testing remains a huge problem, with new reports of bad actor genetic testing companies preying on vulnerable people with promises of “free” information about cancer risk for seniors. I have witnessed this fraud firsthand among patients who have sought my guidance. They have already given their Medicare ID to scam artists who mail genetic test swab kits for questionable genetic tests that are not medically necessary. 

Many people have concerns about genetics and their health risks, and in some cases, genetic counseling and genetic testing can help clarify risk and also guide patient care in important ways. For example, after genetic counseling, it may be determined that genetic testing for some specific gene targets is important for a patient’s cancer treatment decisions to allow for optimal care and prevention of future cancers.  However, in many cases, through genetic counseling, it may be determined that genetic testing is not likely to be helpful. For example, based on the specific cancer type, the chance of a genetic risk may be low, or there may be information about genetics that is already known in the family that comes to light during genetic counseling that indicates genetic testing is unlikely to provide beneficial information. An independent genetic counselor can help sort through the history and provide recommendations about genetic testing that best meet that individual’s needs.     

The problem of inappropriate, over-utilization of genetic testing is not solely due to nefarious actors. Without access to covered genetic counseling services, hospitals and healthcare systems look to other options, such as employees of the testing laboratories, creating a conflict of interest that can lead to greater unnecessary testing.

I am requesting your support H.R. 2144 / S. 1450. As genetics becomes increasingly important to healthcare delivery, now more than ever, it is critical that we have independent genetic counselors who can help support and guide patients. Maintaining independent genetic counselors, whose service is not dependent on the sale of sometimes unnecessary genetic tests, will only be possible if these services, provided by the most qualified providers to deliver them, are reimbursed in their own right. 

I am available for any questions about the importance of this bill. Thank you for your time and consideration.

[Your Name]