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Why Has UCSD Failed to Notify HIV Patients of Data Breach?

Data breaches are already upsetting enough, especially when your highly-sensitive personally identifiable information is put at risk. But when it comes to data breaches and fraud, perhaps there’s no greater intrusion than to suffer a data breach of your medical information; somehow though, even that kind of intrusion pales in comparison to being victimized in a breach then victimized again by the company who failed to inform you about it.

Now imagine that the medical information that was breached is of the most private nature, one that could have serious consequences for the victims should it get out.

University of California-San Diego partnered with a health services industry organization known as Christie’s Place to recruit participants for a vital, worthwhile study. The study’s subjects were all HIV-positive women who were examined on their commitment to treatment based on experiences with domestic violence, trauma, mental illness, and substance abuse. Unfortunately, the entire case file for all of the study’s participants was left visible in the computer—accessible to literally anyone who worked or volunteered with Christie’s Place.

Somehow, this data breach has taken yet another upsetting turn: UCSD decided not to inform the patients that their information has been exposed. The details on who was behind that decision have not been very clear, but as of recent reports, the patients are still unaware.

There are some very unclear details emerging from this, including allegations of misconduct and even possible attempts to inflate the numbers of patients receiving support. However, none of those accusations has been proven. More information on those matters can be found here.

In the meantime, the very least that can be argued about this breach and the failure to notify is that patients have not been given an opportunity to take action to secure their information. Some of the participants also may have not shared news of their diagnoses with others, and a violation of this kind could have serious consequences for them. The university has stated that it will notify patients very soon, but there is no specific timeline for that to take place.


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A security researcher discovered an unsecured online storage server—an all-too-common occurrence known as an accidental overexposure—that linked to 4.9 million lines of patient records from an addiction treatment center called Steps to Recovery. Those millions of lines of information were not all for separate patients, but rather were separate entries on almost 150,000 of the same patients, outlining their medical treatment.

When it comes to data breaches and hacking, personally identifiable information like Social Security numbers are considered the “holy grail” of theft. Credit card information or emails are still very valuable and useful—since the card numbers make purchases until the bank shuts them down, or the email address can be sold to spammers—but Social Security numbers are permanent. With the intact data set of identifying information (PII), a thief can sell the complete records or use them to open new lines of credit in someone’s name, potentially forever.

Unfortunately, a Social Security number is not the very worst PII that can be exposed to hackers. As one report has now demonstrated, leaked patient medical treatment records can have a far more harmful effect, making the victim wish that it was “just” their Social Security number that had been stolen.

There is an unfortunate stigma that still surrounds addiction and mental health, and the possibilities are nightmarish for what a hacker could have done with this information. Whether through blackmail by threatening to expose the patients’ treatment or using the information to target them with malicious content, there are no words to describe how this could have brought harm to vulnerable people who sought help for their conditions.

Fortunately, the discovery was made by a security researcher who then contacted both Steps to Recovery and the company that hosts the treatment center’s online server. While the hosting company responded to confirm that the treatment center took down the information, Steps to Recovery never responded to the researcher’s request for information concerning patient notification. It is still not known whether the center ever informed the patients about the leak.

In order to demonstrate just how serious this is, the researcher went a little further. By cross-matching patient records that were left wide open online with basic, free Google searches, he was able to find a reasonable match for a sampling of patients listed in the leak. Those results provided names, addresses, family members’ names, ages, phone numbers and email addresses, and even political affiliations. This demonstrates just how dangerous this leak truly was, and hopefully the patients have now been informed of the situation.


Contact the Identity Theft Resource Center for toll-free, no-cost assistance at (888) 400-5530. For on-the-go assistance, check out the free ID Theft Help App from ITRC.

Read next: New Tool Breach Clarity Helps Consumers Make Sense of Data Breaches 

Whenever consumers learn about another data breach, they might envision a team of highly-skilled tech operatives working away at fancy computers in a darkened, windowless shop. That kind of scenario might happen, but the reality is that many data breaches are pulled off by an individual working off a laptop in a coffee shop. It is also a possibility that the breach occurred completely by mistake  – like when someone forgets to password-protect a server that stores millions of records.

These kinds of accidental data breaches have made headlines in recent months. Truthfully, some are discovered by the good guys who then report them to the companies at fault. The security flaws are fixed and the notification letters get sent out if necessary, all of which happens hopefully before anyone has had a chance to discover the exposed data and use it maliciously.

Even if so-called good guys discover the problem your information was out there for the taking. It is not always a matter of your username and password, sometimes much more personal information is available. Like in the Meditab Software Inc. breach that happened in the first quarter of 2019, where entire medical histories and prescriptions were exposed.

In this chilling situation California-based medical software developer, Meditab, left a feature unprotected in one of its tools. Meditab claims to be one of the world’s leading providers of medical record-keeping software, and it also provides fax capabilities through its partner company, MedPharm. The company was storing patient records on an unprotected server, which meant that any time MedPharm handled the faxing of a patient’s medical records, anyone with internet access could have seen it if they knew where to look.

Fortunately, those good guys discovered this one. A Dubai-based cybersecurity firm named SpiderSilk found that Meditab’s unsecured database included names, addresses, some Social Security numbers, medical histories, doctors’ notes, prescriptions, health insurance data and more. Patients affected ranged in age from early childhood to mature adults.

This kind of violation is a very serious matter under the laws surrounding HIPAA privacy, and the US government has a solid record of going after entities that store information and do not protect it adequately. If the breach was accidental and even if there is no proof that anyone used the information for harm, there are still very heavy fines and penalties for failing to store it securely.

Unfortunately, there are not a lot of actionable steps that individual patients can take in cases like this one. You can, however, ask the hard questions before the event occurs: how will my information be stored, who can access it, what company hosts your electronic database, what are you prepared to do if there is a data breach? Also, remember that there is often no need to share your most sensitive information when filling out basic medical forms; feel free to ask the person requesting it why it is needed.

Medical identity theft is a serious matter, and of all the types of identity-related crimes, this one can potentially have physical consequences for the patient if a thief uses their medical history. It is important to safeguard your medical records as much as possible, and to make your healthcare provider aware if there are any past medical identity theft issues with your personally identifiable information that could impact your care.


Contact the Identity Theft Resource Center for toll-free, no-cost assistance at (888) 400-5530. For on-the-go assistance, check out the free ID Theft Help App from ITRC.