A new law in New Jersey helps women with a condition that puts them at higher risk of breast cancer get additional screenings - but it fails to require health care providers to inform women when they have the condition and might need those tests.
Advocates claim the law is a step "in the right direction" but falls woefully short after it was watered down in the state Assembly.
The law pertains to women who have dense breast tissue - a condition that puts them at five times greater risk of breast cancer. Dense tissue makes mammograms harder to read because both dense tissue and cancer appear white on mammograms, making tumors harder to spot. Picture trying to find a snowball in a mound of snow.
It is estimated that 40 percent of women who get mammograms have dense breasts and 10 percent of those have extremely dense tissue.
The new law requires insurance companies to pick up the tab for additional screenings like ultrasound, magnetic resonance imaging, and three-dimensional mammography for women with extremely dense breast tissue. Insurers must also cover testing when a patient has other risk factors, such as a family history of the disease, positive genetic testing, or a prior personal history of breast cancer.
The measure initially required that a letter be sent to women telling them they have dense tissue, so they could decide whether they wanted more testing.
But it was rewritten after Dr. Sharon Mass, chairwoman of the New Jersey section of the American Congress of Obstetricians and Gynecologists testified before Assembly members last year, saying her group opposed direct notification. She said it would lead to physicians ordering unnecessary tests to prevent lawsuits, and noted that a higher percentage of false-positives would lead to more biopsies.
The bill was also opposed by the state insurance industry, which claimed that although there is no evidence that widespread ultrasound screening saves lives, the measure would drive up costs.
The bill passed both houses. It now requires that a generic letter be sent to all women - not just those with dense breasts - explaining that dense breast tissue may require additional screenings. It does not tell women if they have dense breasts.
Patient advocates and some physicians are concerned that the law doesn't do enough to protect women.
"This general letter doesn't really give the patient any information," said Dr. Lisa Weinstock, a radiologist and owner of Women's Digital Imaging in Ridgewood, N.J., who testified in favor of the original bill in Trenton. "It can put fear into women who don't have dense tissue and doesn't give enough information to those who do."
As the bill was rewritten, at least one sponsor - state Sen. Nia H. Gill, D-Essex - took her name off the measure. She would not discuss the law with a reporter when it was signed by Gov. Chris Christie recently. State Sen. Loretta Weinberg, D-Teaneck, another sponsor, would also not talk about the law, offering a written statement instead:
"Our goal was to ensure that women who have dense breast tissue, or other factors that may lead to cancer being missed, were able to access important health information and preventive care," Weinberg said in the statement. "While I am disappointed that we did not get everything we wanted, it was important that we moved this legislation so that women are aware of the risk factors associated with dense breast tissue."
Laurie Scofield, a Wayne resident, said her cancer went undetected for two years as she continued to ask her doctor about a lump in her breast. Because her mammogram came back negative, Scofield was told it was probably a cyst.
By the time Scofield was diagnosed in 2010 she was 48 years old and had Stage 3 cancer. She is "doing well" now but endured nearly a year of treatment that included chemotherapy, surgery and radiation. She founded the non-profit "Are You Dense?" to raise awareness of the issue.
"This law is a step in the right direction but it's similar to a patient getting a letter explaining the danger of high cholesterol but not saying whether you have it or not," Scofield said.
Currently, radiologists send mammogram results and a report to a patient's doctor, typically a gynecologist. This report may or may not say the patient has dense breast tissue but the report sent to the patient usually just has a box checked to indicate whether the test is negative, monitoring is suggested or further testing is recommended.
"Part of the problem is the doctors who get the report are gynecologists and aren't breast specialists so some might not know further testing may be needed," Scofield said. "Had I been told I had dense tissue I would have insisted on further testing and would have been diagnosed much earlier. I could have avoided much of the treatment I had."
New Jersey is one of 14 states with a law requiring additional testing for women with dense breast tissue or a number of other high-risk factors. But advocates say it is the weakest of the group with its omission of the mandate to inform women with dense tissue.
Despite the murky language of the letters being sent to patients, Scofield said her organization will continue "to educate the women of New Jersey on the facts and that supplemental screening options should be discussed with their doctor."