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How 30,000 People Took More Control of Their Health: A Milestone in Accessible Personalized Medicine

Scott Topper, PhD

This month at Color, we reached a major milestone towards realizing our vision of accessible, compassionate healthcare. We completed our 30,000th genetic counseling session, marking an incredible accomplishment of bringing meaningful and personal care, guidance and support to so many wonderful people around the world.  Since Color launched in 2015, we have worked every day to understand the obstacles people face in finding the right care, to eliminate those obstacles, and to bring an empathetic support structure to people who are working to understand how to get or stay healthy. People say that the healthcare system can’t change for the better. Our work shows that in places, it already has. 

What is a genetic counselor? A genetic counselor is a health professional who has special training in the genetics of human disease, and in counseling and communication. A genetic counselor helps people understand their family history and their genetics, and helps people make good decisions about their health, informed by the specifics of their unique circumstances. Genetic counselors work closely with other medical professionals to make sure that plans turn into action, and to drive important health outcomes.  Color has built a truly innovative genetic counseling practice, bringing together exceptional talent and supporting them in bringing their services to a huge audience. 

This milestone represents meaningful progress toward access.  We ensure that cost is not a barrier, including genetic counseling as a key component of all of our health programs. We innovate using remote and digitally-enabled consultations, so that people can easily connect with a genetic counselor regardless of where they live. Our 30,000 patients have come from every state in the U.S. and a handful of countries around the world. Color drives equity by making counseling services available in multiple languages, natively or through embedded translation services, through cultural respect and sensitivity, and by investing in education to increase diversity and representation in the field.

About 10% of our clients have come to us by way of the NIH’s All of Us Research Program. All of Us is the United States’ national precision medicine initiative, and advances precision medicine by engaging a diverse cohort of 1 million volunteers to donate their genome sequences, medical records and other information into an open access research model. In return for participation, research volunteers have the option to receive personal information about how their DNA might impact their own risk of disease. Color is the All of Us Research Program’s Genetic Counseling Resource– it’s our team on the phone with people across the country, helping them understand their genetic findings, their risk of disease, their family history, the ways their DNA can impact how their bodies process medications, and the right next steps in their care. The diversity embraced within the All of Us program is one of its proudest accomplishments. The NIH recently announced that half of all All of Us participants have non-European ancestry, compared to the 10% in previous large scale research projects. Through our work with the program Color has also developed and grown, expanding our team, our services, and our understanding of the real obstacles people face in accessing healthcare.

The Expanding Role of Genetic Counseling

Color’s genetic counselors have expanded the traditional scope of practice in many different ways. First and foremost, our team are experts in exploring and understanding the many factors that can lead to experiencing disease or managing its outcomes. They take a “whole person” approach, trying to help participants understand and document their personal and family history, and even what lifestyle factors can improve or diminish health. They help people understand what their genetics means about their own inherited risk of adult onset conditions like cancer or heart disease, and what additional screenings or care are recommended for people like them. They help people think about how their genetics might impact the effectiveness or safety of prescribed medications. They help people understand what the implications might be for their children, siblings or parents. Then they go a step farther, and work with our medical team to help make sure that the client’s full care team appreciates their client’s unique situation, that a clear care plan is established, and that the participant is supported in accessing that care. If that care includes more frequent screening for early onset disease, Color can connect patients with at-home screening kits, assistance with finding and scheduling in-network screenings like mammograms or colonoscopies, communicating with primary care doctors, and if needed, transitioning into treatment as quickly as possible. 

An Accessible Approach to High-Risk Care 

The healthcare system is full of barriers: busy work schedules, long distances to clinics, scarcity of appointments, burdensome copays, and confusing guidelines. It’s no surprise that 65% of Americans are not up to date on their cancer screening. Inequities in care can exacerbate the problem: For example, Black men are twice as likely as White men are to die of prostate cancer. Individuals in rural areas are ~14% more likely to die from cancer than their urban counterparts are. Hispanic women are 40% more likely to be diagnosed with cervical cancer than are white women. Providing access to expert, compassionate healthcare providers like genetic counselors can help. 

To help combat these inequities, Color takes healthcare out of offices and hospitals, and brings it to where people’s lives happen: their homes, their schools, places of worship, and work. Our patient-centered model makes it easy to enroll, screen for disease or risk, and meet with a clinician to discuss next steps. It’s a high-quality, efficient, and accessible experience. The results speak for themselves: increased utilization of recommended screenings, lowered costs, and improved outcomes.

Onward

This milestone represents a beginning. As we look forward, we are still working to find new, creative ways to improve health. Through our partnership with the American Cancer Society, we are now bringing full cancer screening and support programs to employer health benefit programs nationwide.

Our genetic counseling team is instrumental in designing and implementing a vision of a truly accessible, truly exemplary high-risk clinic, making sure that every one of us has the opportunity to be seen, heard, and guided expertly through our healthcare journey.