GLAD, AIDS Action may sue MGH over HIV disclosures

A group of attorneys representing four HIV/AIDS advocacy organizations may file suit against Massachusetts General Hospital for breach of privacy on behalf of seven patients whose HIV status was accidentally disclosed when an MGH billing manager left a bundle of billing records on the MBTA Red Line train on March 9 (see "MGH records lost on T include patient's HIV status," March 25). The bundle of between 40 and 50 billing tickets contained patient names and infectious disease diagnoses, and the seven patients contemplating legal action are in treatment at MGH for their HIV infection. The whereabouts of those billing tickets are unknown.

Attorneys for Gay and Lesbian Advocates and Defenders (GLAD), AIDS Action Committee of Massachusetts (AAC), JRI Health and Harvard University's AIDS Law Clinic sent a letter to MGH President Peter Slavin and other hospital administrators April 16 calling on MGH to meet with them and discuss ways to address their clients' concerns about the breach of confidentiality around their HIV status. The letter, signed by Ben Klein of GLAD, Denise McWilliams of AIDS Action, Robert Greenwald of Harvard's AIDS Law Clinic, and Annie Singh of JRI Health, explained that their "goal is not to litigate this issue," according to a copy of the letter obtained by Bay Windows. The attorneys wrote that their goal is "to work with [MGH] to make sure that safeguards are in place to ensure that this type of incident never happens again and to provide a more forthcoming response to the individuals we represent."
More than two weeks have elapsed since the attorneys sent their letter, and McWilliams said she has little faith that MGH will respond.

"At this point I don't expect to get an answer from them. The one thing that one expects in these circumstances is if someone can't give an immediate response the other side will make a phone call to ask for more time. But as we've heard nothing, that's what I expect," said McWilliams.
Klein said if MGH does not respond to the patients he and the other attorneys represent they may file suit against the hospital.

"I certainly am surprised we have heard nothing from them to date, and it concerns me because I think their general approach here has been one of withholding information and not really demonstrating much respect for their patients in the face of a very egregious public disclosure of HIV status," said Klein. "So I certainly hope they respond, but they aren't giving me any reason for optimism. ... I think litigation is really the alternative if Mass. General doesn't really see fit to speak with us and their patients."
Valerie Wencis, a spokesperson for MGH, confirmed that the hospital received the letter.

"We haven't responded to the letter but we fully intend to do so," said Wencis.

According to an MGH incident report obtained by Bay Windows, the billing manager for MGH's Infectious Disease Associates clinic brought a bundle of 40-50 billing tickets with her on the Red Line on her way into work the morning of March 9, after having brought them home to work on them the prior weekend. The billing tickets were eight-by-12 sheets of paper that contained the names, diagnoses, birthdates, medical record numbers, and health insurers and policy numbers of Infectious Disease Associates patients. The billing manager accidentally left the bundle, secured by a rubber band rather than an envelope, on the train when she exited. A clinic administrator reported the missing records to MGH Police and Security later that day, and the hospital sent notification letters to the patients whose names were on the lost billing tickets, including the seven HIV-positive patients represented by the HIV/AIDS advocates.

The disclosure letter, a copy of which was obtained by Bay Windows, contained a description of the information that was lost, instructions on how to prevent identity theft and an offer for a free subscription to a credit monitoring service, but it did not detail how the billing tickets were lost.

Following Bay Windows' initial report about the lost information, the newspaper obtained a copy of a second letter sent to an Infectious Disease Associates patient from the clinic informing the patient that on March 6, three days before the loss of the billing tickets, a paper copy of the clinic's daily office schedule was lost outside of the hospital. The letter explained that the schedule contained the patient's name and medical record number as well as the name of the doctor and the clinic. The letter did not explain how the office schedule was lost or whether its disappearance was connected to the loss of the billing tickets. The patient who received the letter was also among the patients whose billing tickets were lost, and the patient is among the seven represented by the HIV/AIDS advocates.

Wencis explained that the daily office schedule was among the papers lost by the billing manager on the Red Line.
When Bay Windows initially reported on the loss of the billing tickets MGH declined to explain whether the hospital has any policy regarding the removal of paper records with patient information from the premises. In response to inquiries for this story Wencis said that the removal of the billing tickets by the billing manager was a direct violation of MGH policy.

"MGH does not condone and considers it a breach of hospital policy, the removal of records containing protected health information from the premises of the hospital. Taking such documents off premises risks unintended consequences and is a violation of hospital policy and procedure," said Wencis. When the hospital becomes aware of such a violation, she said, it "takes appropriate corrective action." She declined to say whether the billing manager who lost the billing tickets was disciplined or terminated for the offense, citing employee confidentiality concerns.

The disclosure letters sent to patients indicated that the incident was being investigated by MGH Police and Security. MGH has not released any information about the findings of the investigation or whether the missing billing tickets and office schedule were recovered.

"The investigation is ongoing," said Wencis.
She said other patients beyond those represented by the HIV/AIDS advocates have contacted MGH with concerns about the loss of their records.

"We were contacted by a number of patients and we've responded to their questions and concerns," said Wencis. She declined to describe those interactions with other patients, citing patient confidentiality.

Klein said the seven patients he and his colleagues are representing have received little information about the circumstances surrounding the disappearance of the billing tickets and office schedule. He said the patients are also frustrated that the notification letters they received from MGH contained no acknowledgement of the harm caused by the accidental disclosure of HIV status.

"I think people are looking for them to approach this in a more humane way. The letter they sent to patients almost read like a form letter, and I think they failed to appreciate the impact the disclosure of HIV status would have on their patients," said Klein. "And the individuals we've talked to are looking in part for some acknowledgement of the error that occurred here and an understanding of the impact it had on them."

McWilliams said that her clients are less concerned about identity theft and more worried about the impact of the disclosure of their HIV status.

"I've had people ask me if they thought they were going to be blackmailed at this point," said McWilliams.
She said MGH must determine how the disclosures occurred and work to prevent future disclosures.

"I do think the first step has to be an analysis, and the second step has to be a corrective action plan, and finally, clients need to know what that is," said McWilliams. "Clients I have spoken with have been concerned because they don't know what's going on."

McWilliams said the seven patients are strongly considering suing MGH for a breach of privacy, particularly after the long delay in a response to the advocates' letter.

"The people I have spoken to who are affected by this are very interested in litigation. Unfortunately they feel even more disrespected now that Mass. General has failed to respond. ... If the decision is to go forward with litigation I would expect a complaint to be filed no later than two months from now," said McWilliams.

Klein said while GLAD has seen many instances of HIV disclosure, this case is exceptional.

"This situation is really unique in terms of the number of individuals involved and the very public place these records were left," said Klein. "I have not seen anything like that in my 15 years here."