year in review InformedDNA

Some of the most common questions our genetic counselors received during the COVID-19 pandemic were related to risk: “Does my family’s medical history put me at greater risk for this disease? What is the impact of genetic variation on COVID-19 susceptibility? Do inherited medical conditions increase the odds that I’ll contract the virus?”

But for many consumers, finding expert answers from qualified medical professionals became harder than ever during the pandemic. Not only has demand for genetics expertise soared, but the availability of in-person care sharply declined at the start of the pandemic.  

That’s not the case for InformedDNA. We were able to ensure continued access to genetics experts for vulnerable populations during the pandemic. Our telemedicine model for genetic counseling, established in 2007, enabled us to continue to help patients understand their risk for inherited conditions and navigate their options in partnership with their physicians. We also empowered hospitals, health plans, and patients with solutions that not only ensure that patients get the right care at the right time, but also reduce the overall costs associated with Genetic Benefits Management™. 

Given the continuity of our well-established telegenetic process, we thought it important to showcase just a few ways InformedDNA made a big impact on patient access, provider decision support, and precision medicine research throughout 2020.

No. 1: “Is there a doctor in the house?” Yes—virtually. With more healthcare providers turning to telehealth out of necessity, InformedDNA provided expert guidance on how to navigate virtual genetic testing decision support for physicians and enabled remote counseling for consumers. Because we launched our telemedicine model more than 13 years ago, we were well-positioned to help medical professionals navigate virtual terrain. We provided guidance to physicians and patients across all medical specialties. 

Consider that reproductive genetic testing now comprises 60% of all genetic test authorization requests and is poised to demonstrate even stronger growth in 2021. During the pandemic, reproductive testing requests dropped 15%, primarily because parents-to-be feared being exposed to the virus in a traditional healthcare setting. The risk: Because the window for reproductive testing is brief, parents who choose to forgo testing may miss a vital window for prenatal education. This means they may be unprepared for the road ahead. Access to reproductive genetic counseling via telehealth links parents to a genetic counselor in real-time—whether from the patient’s home or inside the OBGYN’s office. Everything from risk assessment to pre-and post-test genetic counseling, prior authorization and test ordering and facilitation can happen virtually. During each step, the patient’s maternity care physician is kept apprised of every development along the way, ensuring continuity of care.  

No. 2: Bold steps toward on-the-ground support for rare disease gene therapy management. As the growth of orphan drugs—therapies designed to treat these rare conditions—continues to climb, the need for expert guidance around who should receive these therapies has intensified. Decisions around these treatments leave little room for error. Some of these “miracle drugs” only work if the patient has the matching molecular basis to respond to treatment. If a patient who is prescribed one of these therapies isn’t the right candidate for treatment, not only could this put the individual’s health at risk, but it could also result in unnecessary—and exorbitant—costs, ranging from $150,000 to $1 million for a single course of treatment.

Throughout 2020, InformedDNA continued to provide expertise and one-to-one patient and physician support to help ensure that the right patients had access to the right drug. Our work around orphan drugs remains a top area of focus in 2021 and beyond. Genetic education for members and ordering physicians is just the beginning. Now in 2021, as physicians grapple with the costs, complexities, and risks associated with the use of expensive orphan drugs—and as patients struggle to understand which options are appropriate—access to relevant, real-time genetics expertise at every stage of the decision-making process will be key for all parties. 

No. 3: A global initiative to identify candidates for clinical trials. In 2020, InformedDNA expanded capabilities for engaging community physicians in identifying and screening patients for clinical trials, including expanding participation even beyond the U.S. For example, in Mexico, we put a telemedicine-based screening process in place to evaluate potential candidates for clinical trials following test result disclosure. When individuals met the requirements for a trial, we then facilitated travel to U.S. sites for participation.   

Expanding the pool of participants for genetic research trials is critical, especially when it comes to clinical trials for orphan drugs. Currently, there are more than 2,500 gene-based therapies in biotech pipelines, many of which are designed to treat rare diseases. Clinical trials for these emerging therapies typically target very small patient populations. As a result, researchers face significant challenges in identifying and enrolling qualified participants. And while biotech and pharmaceutical companies routinely reach out to patient advocacy groups to widen the pool of potential candidates, engaging a uniquely diverse population of patients in the clinical trial development process can be even more difficult than anticipated.

Continuing the Momentum in 2021

The past year has presented challenges for so many, and the pandemic will continue to have ripple effects that will affect us all in different ways. As consumers and businesses have navigated a rapidly evolving environment, dealing with social isolation and, in many instances, personal loss, and adjusting to a virtual workplace and virtual care, we have also shown our resiliency and a strong desire to work together to achieve better outcomes. 

At InformedDNA, as we look back on 2020, we’re grateful that the telemedicine model for genetic counseling that we established in 2007 empowered us to continue to meet the needs of patients, providers, and health plans during the pandemic. This model ensured vital services could still be offered despite barriers to in-person consultation and care. We’re proud of our team for their dedication, professionalism and teamwork over the past year under extraordinary circumstances. 

We’re also inspired by the tremendous perseverance of our clients and partners and so many throughout the healthcare industry collaborating to find solutions to the industry’s biggest challenges. In 2021, we look forward to deepening our partnerships in the national healthcare community to advance access to genetics expertise on an even broader scale.

If you’d like to learn more about InformedDNA and the expert genetics services we offer for health planshealth systems and hospitals, or pharmaceutical companies, please get in touch – just fill out the short form below, or give us a call: 844-846-3763.


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