DIRECT YOUR CARE, DEMAND SEQUENCING
Bryce Olson was diagnosed with aggressive stage 4 prostate cancer. When the standard of care didn’t work, Bryce turned to genomic sequencing which allowed his doctors to identify specific molecular drivers of his disease and identify specific treatments and clinical trials that were a better fit for his specific cancer. If you have cancer, you can do this too.
“The driver of my cancer was hidden in my DNA. I asked my doctors to ‘Sequence Me.’ The insights from genomic sequencing opened new doors and saved my life. Fight cancer differently with data.”
Improve your Genomic IQ
Meet GIA (our Genomic Information Assistant from Clear Genetics). GIA is the first clinical-grade, HIPAA-compliant chatbot that is focused on educating cancer patients about the power of genomics, answering your questions, and helping you take the next steps towards improving your outcomes.
Click the blue GIA chat button in the bottom right corner of your screen.
Clear Genetics is a software company that is building technology, including an AI-driven platform, to scale the delivery of genetic and genomic services. They are driven to make genomics more accessible and offer thoughtful solutions to improve patient access to cutting-edge research.
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POWER TO THE PEOPLE
You have the power to demand that your doctors tell you what is driving your disease and use that to open new doors. Go beyond the standard. Be your own best advocate and demand to be sequenced. Get a “Sequence Me” shirt, choose between Men’s or Women’s size, wear it in support of your friends and family members fighting cancer, or wear it to your next doctor appointment and start the conversation about getting the DNA of your cancer profiled.
Note: Proceeds from shirt sales are donated to the Children's Cancer Association (CCA), based in Portland, OR.
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INDIVIDUALIZE YOUR CARE – DEMAND SEQUENCING
Most diagnostic test companies will accepts all insurance plans. However, that doesn’t mean your insurance company will agree to cover the costs. It is very possible that the test provider will not be in-network with the providers in your insurance plans. If you are uninsured, or if you have insurance and cannot afford the applicable out-of-pocket cost, you also have options. You can fill out a financial assistance application from the diagnostic test companies
Regarding coverage, fortunately, the Centers for Medicare & Medicaid Services (CMS) issued a final National Coverage Determination (NCD) for patients who receive next generation sequencing (NGS) testing with an assay that meets the coverage criteria. Medicare and Medicare Advantage patients who receive testing with FoundationOne CDx™ (from Foundation Medicine) the first FDA-approved comprehensive genomic profiling (CGP) assay for all solid tumors incorporating a broad set of companion diagnostics, will be eligible for coverage.
For those who have private health insurance coverage through employers, or direct purchase coverage, here is some strategic guidance to get those tests covered by insurance. First, push your physician to order the test and ask them to communicate to your insurance company that you have recurrent, relapsed, refractory, metastatic, or advanced (stage III or IV) cancer (assuming this is the case for your condition). Include the fact that you’ve decided to seek further cancer treatment, and that you haven’t previously been tested using the same next generation sequencing (NGS) test that your doctor is ordering for you. If you are denied / rejected by insurance than try and seek financial assistance from the diagnostic testing company or hospital / cancer center that is offering the service. If this still fails to address the payment issue, we’d like to hear from you. Sequenceme.org isn’t set up to provide financial assistance for these tests, but we’re more than happy to use social media to shine a light on organizations that are pushing back on enabling you to get these tests approved and covered.
Reimbursement can be challenging because these are early days of something new and revolutionary. Science and technology advancements are occurring at exponential rates. Healthcare is still moving at more of a linear step-wise fashion. Sometimes payers will decline coverage because they feel there isn’t enough data to determine the clinical utility of these tests. What’s maddening is that as an industry we won’t be able to generate enough data if we don’t start covering the costs of these clinically validated tests. Catch 22. We need to collectively fix this!
Because it helps get the right drug to the right patient at the right time. It’s how we really move to ‘value-based care’ or ‘outcome driven healthcare.’ It can help open new doors beyond the ‘standard of care’ which is more of a one-size-fits-all approach to cancer care that doesn’t take into consideration the uniqueness of you.
Cancer is a genetic disease. The DNA of your cells have become mutated. You need to know the mutations in your tumor. This will help you and your doctor select treatment options, including clinical trials, that are likely to work best for you and may not be considered otherwise. A treatment that works well for one person may not work as well for you.
All advanced cancer patients deserve to have new doors opened. We all want new hope. Besides the standard of care, we have the right to consider targeted therapy (i.e. drugs specifically built to go after the mutations driving your disease), appropriate clinical trials that go after the same molecular targets driving your cancer, or off label treatments that may be effective for your specific tumor mutations. There are also genomic signatures like TMB (tumor mutational burden) and MSI (microsatellite instability) and PD-L1 expression that are biomarkers that are very helpful in determining whether you’d be a good fit for new immunotherapy treatments or not. Don’t you want to know?
Genetic testing detects hereditary (inherited from parents) alterations in DNA while genomic testing detects acquired (over the course of a lifetime) alterations in DNA. Acquired alterations are responsible for the majority of cancers and may impact tumor growth, spread, and response to therapy. Comprehensive genomic profiling (CGP) is far superior to single-gene testing that only identifies one or two classes of genomic alterations. CGP’s approach identifies
Download the ‘battle card’ we’re offering, print it and bring it to your next doctor appointment. Buying and wearing the t-shirt will also help spark a conversation. Remind your doctor that cancer is a genetic disease and that the DNA of your cells have become mutated and you want to know what those mutations are. This will help you and your doctor select treatment options, including clinical trials, that are likely to work best for you and may not be considered
In the end, doctors want to know that if they order a test it will have strong predictive power to identify treatment (i.e. who will be a responder vs non-responder) and that the predictive biomarkers found on these tests are also on the patient-relevant clinical pathways/guidelines. It also helps when a test is mandated in a therapeutics’ FDA labeling.
Tell your doctor that you want new doors opened. You want new hope. Besides the standard of care, you want to consider targeted therapy, appropriate clinical trials that go after the same molecular targets driving your cancer, or off label treatments that may be effective for your specific tumor mutations. All of these options can be better informed through the results of these tests. If your doctor is still shaking his/her head no, then perhaps it’s time to find a different doctor.
Disclaimer: SequenceMe.org provides this information as a service. This information and material is strictly for educational purposes only and is not intended as medical advice, is not intended to take the place of medical professionals, or the recommendations of your healthcare team for prevention, diagnosis and treatment of medical issues. We strongly suggest consulting your healthcare team if you have questions about your specific care.
KEEP UP WITH WHAT’S HAPPENING
As an advanced cancer patient who also works for one of the most innovative tech companies on the planet, Bryce lives on the edge of…Read More
Bryce Olson was recently featured on KATU Channel 2 News in Portland, Oregon. Watch Bryce’s story and learn how gene testing helped Bryce. “The message I just really want to deliver is: demand sequencing. Demand genomic sequencing.”Read More