A few years ago, when she was 22 and fresh out of college, Vanessa Calaban received a distressing text message from her mother. A form had just arrived from the family’s health insurance company, displaying a charge for care Calaban received from a doctor her mother didn’t recognize.
The doctor was a psychiatrist. And that’s why Calaban, although living on her own in Boston, had to tell her parents that she suffers from an anxiety disorder. “I felt very violated,” she said. “I wasn’t ready to tell them.”
Insurance companies frequently send forms to the policyholder rather than the patient who receives the care, potentially revealing to parents, spouses, and even former spouses information about another adult’s most private health decisions. The number of people affected by this practice has grown since 2010, when the Affordable Care Act allowed young adults to stay on their parents’ health plans until age 26.
Now, Massachusetts is considering a bill that would give consumers more control over who sees the insurance forms that list their personal health information. If the bill passes, Massachusetts would join four states — California, Colorado, Maryland, and Oregon — that have passed laws addressing the privacy of insurance forms.
With names such as “explanation of benefits” or “summary of payments,” the forms are not bills, but lists of the services provided and the amounts charged, paid, and owed by the patient.
The Massachusetts legislation would require that payment summaries be sent only to the person receiving services and only if the patient owes money. It allows patients to have the payment summary suppressed altogether. Additionally, it requires insurers to describe “sensitive health care services” in terms that don’t reveal what was done, and to work with providers to educate patients about the legislation.
“Privacy in using your insurance has always been a concern for consumers,” said Clare Coleman, president of the National Family Planning & Reproductive Health Association.
There are several factors bringing the issue to the forefront now, Coleman said. In the past, having insurance often meant having higher income. People seeking care they wanted to keep private simply paid in cash. But now the Affordable Care Act has expanded coverage to lower-income people who can’t afford to pay on their own, and many newly insured people feel they can’t use their insurance, an issue that advocates want to address.
The push for price transparency is further intensifying the problem: Insurers are sending the forms more often, to show the cost of care and to enlist subscribers’ help in detecting fraud.
Dr. Bruce Black, director of a mental health group practice in Wellesley and treasurer of the Massachusetts Psychiatric Society, said the consequences of privacy breaches can be dire.
He told of a divorced father who, after receiving an insurers’ notices revealing that his ex-wife was seeing a psychiatrist, persuaded authorities that she was unstable. Their child was put in foster care for months, according to Black.
Black had another patient, an adolescent girl, whose mother was in an abusive relationship and didn’t want the father to know their daughter was receiving mental-health treatment. She paid out of pocket and could afford fewer visits than the girl needed.
“Who knows how many people are not coming for treatment at all?” Black said.
Erin C. Miller, coordinator of the Domestic Violence/Sexual Assault Program at Newton-Wellesley Hospital, said many of her patients express fears about billing. Some victims reported their partners flew into a rage after learning they had sought treatment, she said.
Under federal law, patients can request that the payment summaries be diverted to them if they feel endangered. But advocates say that doesn’t go far enough.
“Having the patient be in danger is a high bar to meet,” said Alyssa Vangeli, senior health policy manager at Health Care for All, an advocacy group that organized a coalition to push for the legislation. Patients who aren’t in danger still want privacy, she said.
Health insurers are not opposing the bill, but they are negotiating changes with the legislative sponsors. Lora Pellegrini, president of the Massachusetts Association of Health Plans, said the main concern is the provision requiring insurers to suppress the payment summary when the patient requests. Insurers believe it’s important to provide this information, she said, and federal regulations require them to do so when payment for a service is denied.
Insurers vary in how they handle these forms today. Blue Cross Blue Shield of Massachusetts, for example, sends the form to the patient, but at the policyholder’s address. Blue Cross also uses generic terms for certain sensitive services, according to spokeswoman Sharon Torgerson. For example, an HIV test is listed as “lab”; substance abuse screening is called “preventive service.”
Most insurers, including Blue Cross, have procedures to divert the forms when asked.
But that’s easier said than done, according to Miller, of Newton-Wellesley. “If you don’t get to the right person fast enough and they don’t check all the right boxes, the [form] often goes home,” she said. “What you’re asking for is an exception to the system.”
In contrast, the proposed legislation would make it routine for forms to go to the patient at a location the patient designates.
The bill applies to people who can legally consent to care, so in most cases parents would continue to get the forms for their minor children. But minors seeking treatment for pregnancy, sexually transmitted infections, and substance abuse can today obtain treatment without their parents knowing. In those circumstances, the bill would allow the minor to request the form be sent to a different address.
The bill was filed in both the House and Senate. The Joint Committee on Financial Services held a hearing in July but has not voted.