Imagine you're sitting in your doctor's office. And after reviewing your family history, she utters these terrifying words: "You're at risk for breast cancer."
Now, imagine that there is only one company in the world that will test to see exactly how much you're at risk, except first you have to see if your insurance company will pay for the exam. Otherwise, you'll need to scrape up about $3,000 to pay for it out of pocket. And to top it all off, you'll have to wait two weeks for the results. Then when you get the results back, there is no way to get a second opinion to make sure they are accurate.
That's the situation some patients find themselves in when it comes to genetic testing for BRCA1 and BRCA2, two genes apparent in many hereditary breast cancers (and ovarian cancers) which make up 5 to 10 percent of all breast cancers. A groundbreaking lawsuit filed on May 13 seeks to change all of that. Several medical associations, along with patients, have filed suit against Myriad Genetics, the pharmaceutical company that owns the patent to the BRCA1 and BRCA2 breast cancer genes.
The suit insists that it's not legal to have a patent on a human gene, something they didn't create. That patent allows them to be the only company to study the gene and develop testing for it. While some have argued that such exclusivity encourages companies to invest more funds in researching something they have a monopoly on, others disagree, according to the New York Times.
"When you have one company doing the test, there's no competition," explains Kathie-Ann Joseph, M.D., breast cancer specialist and director of research for the department of surgery at Columbia University Medical Center. "They can take as long as they want to do the test and decide which insurances they'll accept."
Aside from the financial constraints, there are two issues that directly affect Black women. "African-American women get more aggressive forms of breast cancer at earlier ages and many lives are being cut short because of late detection and a lack of genetic counseling," says Janet Taylor, M.D., clinical instructor of psychiatry at Columbia University at Harlem Hospital
Also at issue is the fact that Myriad has sole access to the testing results as research tools. "Women of color are much more likely to get tests back that say there is a mutation of unknown significance,'" explains Joseph, who insists if more people were analyzing this data, significance might be found.
How can you protect yourself? "Familiarize yourself with your private insurance benefits." suggests Taylor. That way you'll know whether they cover the testing and can switch companies if this is important to you. "And check with your local hospitals about free testing or testing at a reduced cost," says Taylor.
Lynya Floyd is the ESSENCE magazine Senior Editor for Health and Relationships.