Currently, I work for Myriad Genetic Laboratories, and if you haven’t heard of Myriad this summer then apparently you don’t read or watch TV. This past June, the Supreme Court ruled that five of Myriad’s claims covering isolated DNA were not patent eligible. Regardless of the decision, Myriad has more than 500 valid and enforceable claims in 24 different patents conferring strong patent protection for its BRACAnalysis test, and BRCA testing is only a portion of what we, as a cancer genetics laboratory, do.
The discussion around genetics and cancer is an emotional one, and for those not working in genetics or diagnostics, is complicated and often misconstrued. This is especially true as related to Hereditary Breast and Ovarian Cancer Syndrome and BRCA testing. We are talking about breast cancer, arguably the most publicized cancer with the most visible advocacy worldwide. Issues related to advocacy really deserve an entire blog, and if you want to learn more about that please get involved and follow the hashtag #BCSM or visit the BCSM website. It has been an eye-opening experience for me to really try to understand the patient perspective and in particular the challenges- both personally and advocacy wise-patients living with breast cancer face.
Today I want to tell the story of the best people I have ever worked with.
I came to Myriad because I wanted to help people. I wanted to make an impact on patient care and I wanted to change the pattern of suffering that many families experience with a cancer diagnosis. During the time I was interviewing with Myriad, I interviewed with many different companies. After nauseating conversations with over zealous pharma sales managers hailing their perceived excellence at managing their people (into submission), and one too many managers that asked if I use my detail piece and corporate materials as allocated, and how I gain access to “no-see” accounts using strong closing techniques, my head was spinning and I had almost thrown in the towel. Let’s get real: this is not how to make impact in patient care. It benefits no one.
Then I interviewed with a Myriad manager. Our discussion was solely focused around why I wanted to come to Myriad and the company’s unwavering commitment to saving lives and improving care. Could this be true? I was skeptical at first, but the more people I spoke with the more I realized: these people are FOR REAL. If you aren’t in it for the patients you won’t make it at Myriad. For me, that was a moment of clarity and focus that had me all-in.
Some people really hate Myriad. I mean, like, a lot. Some people don’t. Some people are so blinded by hate that they are unable to even consider the good that Myriad has done and continues to do. They ignore the facts such as 1) validation of Myriad test results by another lab has always been available. All you had to do was ask for it. For a list of labs that have been doing confirmatory test result testing since 1999 please go here. 2) The average out-of-pocket cost for a patient with insurance is $100. 3) Myriad has always offered free testing to patients who have no insurance and meet income/medical requirements, in fact Myriad has provided free testing to over 5,000 patients alone since I started with the company 3 years ago.
I have never worked with a more committed, focused group of people in my life. Every day we get up and our goal is to help providers to find patients who’s lives can be changed by knowing the results of their genetic testing. We want to make a difference. Many of us have been touched either directly or indirectly by cancer or hereditary cancer syndromes at some point in our life, that’s part of what makes us different. We’ve seen first hand, the devastation a late diagnosis or a young diagnosis can have on a family. This is what fuels us and we want to prevent cancer diagnoses in future generations. We want to break the pattern of cancer in these families.
As a by-stander, you might think that there are no patients being missed by their providers, that everyone who is eligible for genetic testing is offered testing by their provider. This is just not true. We who work directly with physicians are faced with the overwhelming reality that patients are missed, every day. I’m not talking a patient here and there. I’m talking about a real problem. This applies not only to Hereditary Breast and Ovarian Cancer Syndrome, but also to other hereditary cancer syndromes like Lynch Syndrome. By the way, Lynch Syndrome testing is offered by multiple labs and has even worse patient identification rates and less research funding allocations than Hereditary Breast and Ovarian Cancer Syndrome. Check out Lynch Syndrome International to learn more about it. This means that we in the field spend much of our time providing education and outreach to physician and patient communities.
I hope to serve as the one advocate that ensures every patient that walks through their physician’s door has been evaluated for hereditary cancer risk. That doesn’t mean every patient is offered testing, it means the physician has taken time on every cancer patient to evaluate their patient’s risk factors for harboring a mutation and having a hereditary cancer syndrome.
Pursuing genetic testing is personal decision, and even though I work for Myriad, I never push any of my friends into testing, even if they absolutely meet criteria for testing. You better believe we will have a conversation about it, but my role in those cases is to provide information and let them make a decision. If they choose to pursue testing, I will be there for them, every step of the way.
I will however, fight like crazy for patients at the physician offices I work with because more often than not, there is no one else talking about hereditary cancer. I’m faced with hearing, “I don’t have time to do this in my practice, or I don’t see these types of patients, these patients are so rare (really!?) or My patients don’t want to know these kind of results.” My question is this: Who’s decision is it? Is it not a quality of care issue? Many patients wouldn’t even know to ask for genetic testing, especially for some less heard of syndromes outside of Hereditary Breast and Ovarian Cancer Syndrome. I believe it is the patient’s decision whether or not to pursue testing and I will make sure that every eligible patient is able to make their own educated decision if I am given the chance.
Cancer diagnoses are complex, there are lots of moving parts and hereditary cancer carries vastly different risks than a regular cancer diagnosis. I hope to serve as the one advocate that ensures every patient that walks through their physician’s door has been evaluated for hereditary cancer risk. That doesn’t mean every patient is offered testing, it means the physician has taken time on every cancer patient to evaluate their patient’s risk factors for harboring a mutation and having a hereditary cancer syndrome. Leaving this step out of an initial diagnosis can lead to second cancers, unnecessary second surgeries and stress/anguish for patients and their families. This also means I’m available to my clients weekdays, weeknights and believe it or not, I’ve helped out with patient cases on the weekend more than you might think.
So when people ask me, “How can you work for this company?” I tell them this: Do you know how many families I have personally helped in the last three years? How many patients who would have gone missed? How many patients I helped get free testing from Myriad? Ask me about it. I’ll tell you. I am committed. My team is committed. There are great people working at Myriad, and we pour our heart and soul into our work. A ruling on patents will never change that.
Disclaimer: This blog post is my opinion and mine alone. It was not and is not sponsored by Myriad Genetic Laboratories.