Californians can now enjoy the benefits of deCODE’s market-leading DNA-based disease risk assessment tests and pioneering deCODEme™ genome scans

deCODE genetics today announced that it has received a clinical laboratory license from the State of California. The quality and scale of deCODE’s in-house, CLIA-registered genotyping laboratory underpins deCODE’s global leadership in the discovery of variations in the sequence of the human genome conferring risk of common diseases. The same staff and facility also process deCODE’s DNA-based reference laboratory tests for gauging individual risk of major public health challenges ranging from heart attack to breast cancer, as well as the company’s pioneering deCODEme™ scans, the world’s first personal genome analysis and focused disease area scans. With this license, California residents can now benefit from the unrivaled quality of deCODE products for understanding risk and, working with their physicians, empowering the prevention of common diseases.

“We believe that understanding genetic risk factors for the common diseases such as heart attack, stroke, type 2 diabetes and common cancers will soon become a standard part of modern healthcare. This information enables individuals to take more control of their health, and is driving the transition from a healthcare system based upon treating diseases once they occur to one focused on disease prevention and early detection. deCODE is unique in that we are the leaders both in the discovery of genetic risk factors for common diseases and in bringing to market the reference laboratory tests and direct-to-consumer scans that enable individuals and their physicians to put these discoveries to work to better protect their health. Our competitors outsource the science, the DNA-analysis, or both. But for us this is the real foundation of personalized medicine, and we are committed to delivering only the best validated tests and the highest quality results, all in-house. We are pleased that Californians will now be able to benefit from the highest quality products in this exciting new field,” said Kari Stefansson, CEO of deCODE.

Through its reference laboratory testing service, www.decodediagnostics.com, deCODE offers DNA-based tests for assessing individual risk of heart attack, type 2 diabetes, breast cancer, prostate cancer, and glaucoma. deCODEme™ is the world’s first retail genome analysis service, avialable at www.decodeme.com. The full genome Complete Scan scan and the Cardio and Cancer scans build on deCODE’s global leadership in the discovery of common variations in the sequence of the human genome conferring increased risk of common diseases. deCODE diagnostic tests and deCODEme™ scans detect the single-letter genetic variations (called SNPs) with the biggest impact on disease risk. These SNPs are validated in large-scale studies by deCODE as well as leading academic research institutions. DNA analysis is conducted in deCODE’s own CLIA-registered laboratory, one of the largest of its kind anywhere in the world.

Lauralee Nygaard, a periodontist from Spokane, WA, says the deCODE tests are easy to take and highly cost effective but that we have to pay close attention to the results and be prepared to make some serious lifestyle changes.

Lauralee Nygaard is a dentist from Spokane, Washington. She is in her early forties and has two young children. Three years ago Lauralee had a stroke while she was performing surgery on a patient. It confirmed her suspicions about a predisposition to heart disease that she had nurtured since she was 18.

“When I was 18, I went to the doctor and said, ‘I know I’m at risk for a heart attack, my dad has hypercholesterolemia.’ The doctor laughed at me. He said, ‘you’re a skinny girl, you’re never going to have heart disease.”

A stroke at forty confirmed her worst fears: “It corroborated the fact that I knew I was at risk. I had pushed my family physician for years to be aggressively preventative with making sure I didn’t have heart disease. He always told me there was nothing they could do.”

As a dentist who had stressed the importance of preventative care for years, Lauralee was ready to practice what she had preached

Finding the right program

Lauralee had heard about the Heart Attack & Stroke Prevention Clinic in Spokane, Washington from some of her patients who had been through the program there and spoken very highly of it. She was impressed from the very start:

“For me it was one of the most unique health care experiences. My first appointment was three hours long—I had never spent three hours in a physician’s office! They spent a lot of time looking at my family history, asking questions about my uncles and my aunts and other people in the family, and going over my symptoms and educating me about heart disease and we did some follow-up tests.”

After taking the deCODE test she discovered, alarmingly, that her risk for heart attack and stroke was considerably higher than the average.

The program at Heart Attack & Stroke Prevention Clinic was quite unlike anything she had experienced before: “I had seen my physician annually for my entire life. I’d always had perfect blood pressure, always had perfect blood work. So, for them to say that ‘well, you had a stroke we’re not sure why’—I just thought, what did they miss? I mean there’s got to be something else. That was just really disturbing. Was I at risk because someone missed something?”

Lauralee expressed her disappointment and frustration with what she calls the ‘five-minute, drive-by doctor’s appointment’. She explains: “even if a physician wants to give you options, he’s not allowed to if he’s on certain insurance plans,” and that most physicians are restricted under the present system.

However, she insists that paying out of her own pocket at the Heart Attack & Stroke Prevention Clinic allowed nurse practitioner Amy Doneen “to have time with patients and be more preventative in terms of her approach to disease.” Lauralee adds that the costs of preventative treatment, as opposed to those incurred after an incident such as stroke or heart attack, are minimal.

The benefits of genetic testing
“To me, the benefit of doing the genetic test is that I can reduce my risk of having another stroke and permanent damage. It’s a short life, you know . . .”

deCODE offers genetic testing for a range of inheritable diseases. This, Lauralee believes, is part of a more efficient and more cost effective method of treatment.

“The motivation for me to follow through with the genetic test was the fact that my mother’s health had been failing rapidly and she had had four strokes in the last six months. She had just been diagnosed with diabetes and was not doing well. I had never really figured out why I had a stroke. Then Amy Doneen at Heart Attack Prevention Clinic suggested that atrial fibrillation (irregular heart rhythm) might have played a role. She explained to me that 30% of cryptogenic stroke diagnosis comes from atrial fibrillation and that this condition was ‘preventable’ with the right medication.”

To her surprise, Lauralee tested negative for the diabetes gene she believed she had inherited from her mother. But the test results affirmed that her stroke has not been a random catastrophe and she did indeed have a genetic disposition for atrial fibrillation. The next step was to take blood thinners that would reduce the risk of clotting after irregular heart rhythm and subsequently reduce the risk of having a stroke.

“The genetic test gave me information (that confirmed with my past stroke) that I am at risk for future strokes. Now, instead of saying, ‘Oh well, I had a stroke. I got lucky—no big deal,’ I can actually make some choices with my health care and avoid another stroke altogether.” Lauralee’s mother had suffered a series of strokes over a short period of time and she did not want to follow along the same path.

“My kids are little—I have kids that are 8 and 10 years old and I would like to be around to see them become productive adults. I think if I could gain some information, I’d be more proactive in my health—I think there’s a lot of benefit in that.”

By the same token, she believes that her children have “so many more preventative options” and could be tested at a much younger age and therefore hopefully avoid an incident altogether. She did not want them to have to wait till 40 or 50 and/or the occurrence of a massive event. Finding out early that they could be at risk would mean earlier intervention.

Modifying behavior for optimum health
Lauralee explains a healthy future is a matter of first getting as much information as possible and then modifying one’s behavior:

“I think things are changing. We’re learning more about how being aware impacts people. I think the more you can learn about your risks, the more you can modify your behavior and the more you can hopefully prevent something that’s going to harm or shorten your life.”

Of course, knowledge can be intimidating, but only if one is not willing to make lifestyle changes. Lauralee claims that the people who are frightened of what genetic testing can offer are mainly those who don’t want to change how they’re living. She admits she had to make some serious changes in her own life, changes that she frowned on several years before her stroke.

Cost effective
Lauralee says some people are naturally concerned about costs and the fact that their insurance might not pay for genetic testing. However, if you find out you are at risk before you damage anything, you can save a great deal. She believes that preventative medicine and genetic testing are highly cost effective!

“We know that a simple swab from the inside of your mouth can gauge your disease risk—that’s a very cost effective test to figure out what your disease predispositions are. Certainly, being more aggressive in prevention is going to lower health care costs over time. For example, it would have cost a lot less for me to know that I was at risk than to have 3 MRIs—in terms of health care expense. On the national scale, heart disease, diabetes, and stroke are some of the greatest issues facing health care in this country at the moment and they’re eating up a good chunk of our health care budget.

Better decisions, better health
After describing the test as “ridiculously easy,” Lauralee admitted that some fears were “a generational issue.” Younger people are much more comfortable with technology and knowledge and do not regard knowing what their genetic makeup is as threatening. People will soon learn that knowledge is power and that it allows us to take better care of our health and make better decisions. She admits, though, that any fears she might have had are allayed by a background in biology. She certainly did not shy away from being proactive: “I mean, I think that you can never ever regret what you invest in taking care of yourself. One body, one life, one chance.”

Does that mean she was glad to have an early warning?

“Yes, totally—it was a blessing. I was very fortunate I got a warning and could shape a path for myself. Not everyone does. 70% of all first heart attacks or strokes result in death for patients.”

She ends by telling us how the pharmacist reacted to her new medication regime:
“My pharmacist, who looks sixteen, said: ‘Can I ask you a personal question? Why are you taking all this medicine?’ (blood thinners, blood pressure and cholesterol medications) I said ‘you mean the medicine of an 80-year-old?—that’s because I want to live to be 80!’”