When Dr. Michael Kayser came to Tulsa in 2007, genetic testing had yet to truly catch on.
"Even when I started, we weren't seeing a lot of patients to discuss risks for things like cancer. We were still mostly focusing on rare diseases, kids with birth defects and syndromes," said Kayser, now medical director of genetic services at Cancer Treatment Centers of America in Tulsa.
It took advances in technology to bring such testing into wide use. Science had established links between inherited genes and some forms of breast cancer by the late 1990s, for example, but only in the last three or four years has popularity spiked for such breast cancer tests, Kayser said.
Many women with insurance can now get genetic screening for breast cancer paid for -- without a co-pay or deductible -- as a part of recent mandates for insurance companies.
"We really are trying to capture the women and families that have these high risks to, hopefully -- personally, I say prevent a disease -- but if nothing else, diagnose it earlier so there's more options available," Kayser said.
Only patients who meet criteria based on family history qualify for what's commonly known as BRCA testing under the rules imposed as a part of federal health care reform.
Inherited genes don't cause most cancers, or even most breast cancer. Mutations passed down from family may cause fewer than 10 percent of all breast cancer cases, according to statistics from the American Cancer Society cited by advocacy group Susan G. Komen For the Cure.
Genetic samples can be taken easily from patients, as they are, for example, at St. John Medical Center. Dr. Denise Rable, director of breast surgery for the hospital, said approximately 100 screenings or tests on those already diagnosed with breast cancer have been done in each of the last two years.
A positive test means deciding what course of action is best. Most famously, actress Angelina Jolie decided to have a double mastectomy based on her risk for cancer.
Elizabeth Bray was two weeks shy of turning 35 when Oklahoma City doctors diagnosed her with breast cancer. After going through treatment, it was concern about others that made her want to take the genetic test in 2006.
"I actually have a son, which is not as great of a risk to pass that gene along, but it potentially could if he were to have a daughter. So, for that reason I wanted to know, but also for my mother and my aunt and my cousin," she said.
It came back negative. The test could have also altered her thinking about treatment options.
"If the genetic testing had come back positive, I then definitely would have looked at doing a double mastectomy for prevention, because I would have been a higher risk for reoccurrence," Bray said. She now lives in Tulsa and is cancer-free.
With cost less likely to be a factor for patients, patients can ask their primary care doctor about it, Kayser suggested.
"The barrier right now is going to be finding someone to walk them through it and talk to them about what it means, what the implications are from a genetics standpoint," Kayser said.
He's the only doctor trained as a genetic physician, a designation that involves having a training residency.
He said he wasn't aware of any genetic counselors in Tulsa, a position that requires a master's degree. At St. John, "I think that patients can be very appropriately and accurately counseled by someone with an interest in that medical issue without it being a licensed genetic counselor, for sure," Rable said.
Counseling isn't mandated by the Affordable Care Act, but it is paid for, and the full consequences of this reform remain unclear. Insurance company Cigna made waves when they announced last month they would require genetic counseling prior to genetic testing.
Kayser wondered if other insurers might follow suit. However, Jack Sommers, senior vice president and chief medical officer for CommunityCare insurance, said the insurer does not require counseling prior to most screenings.
"For most of the covered genetic screenings, their implication is well understood by the ordering physician, such as the BRCA screens for breast cancer," Sommers wrote in an email.
Still, there could be a boom in genetic counseling as a career.
"If this is covered, you could potentially see private genetic counseling offices in town," Kayser said. For now, Cancer Treatment Centers remains focused on late-stage cancer patients, though he said internal conversations have begun to study what role the center might possibly have in genetic screening in Tulsa.
"We are trying to figure out how we can help, because we see it coming and we see the need," Kayser said.
Genetic screening for breast cancer is also available for at-risk patients on SoonerCare, the state's version of the Medicaid safety net insurance program, according to Alison Adams Martinez, a geneticist with the Oklahoma Health Care Authority.
"Effective July of 2013, we now also cover genetic counseling for members that meet the criteria for genetic testing," she wrote in an email.
After a positive test, along with surgery, options include drug treatments and extensive -- and expensive -- monitoring.
The Affordable Care Act refers to guidelines published by the U.S. Preventive Services Task Force, but doesn't mandate that insurance pay for the follow-up measures that may be recommended after a positive result.
However, insurers often recognize that it's more expensive to pay for cancer treatment than it is to pay for such follow-up measures, noted Sue Friedman, founder and executive director of national patient advocacy group Facing Our Risk of Cancer Empowered.
"Most people, their insurance will cover preventive action," Friedman said.
Sommers confirmed that with CommunityCare, chemoprevention and enhanced screening would be paid for -- without a cost burden on an enrollee -- after a positive screening. Preventive surgery wouldn't fall under a "no cost share" provision, but it would be covered.
Kayser said similar testing exists for pancreatic cancer -- but that there's no mandate that insurers pay for it, a decision he was at a loss to explain.
"I call it a start," he said of the genetic screening portion of health care reform. "It's the ability to open up the dialog and to see how things work out."
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