As I've written about here multiple times, I'm not a big fan of the HIV testing law in our state.
First, there's the requirement for written informed consent, something that every state (except a couple) has wisely abandoned. Second, it's more than a testing law -- it's also an HIV privacy law, which is arguably unnecessary in this post HIPAA era and has all sorts of unintended consequences.
Last year, two bills were proposed -- one simply removed the requirement for written consent, while the other replaced it with a requirement for verbal consent. The groups backing these respective bills (I was part of the former) didn't work out a compromise, and so no bill was passed.
This year? Something very strange has happened. We have a bill pending "An Act to Increase routine screening for HIV" that would remove written consent but would also expand HIV-related privacy protections and mandate that primary care and ID providers "offer" HIV tests to their patients. The bill is working its way through government channels, on its way to being passed.
And you know what? I'm not aware of a single ID or HIV clinician who supports it.
This includes providers at hospitals, community-based clinics, group practices, and the largest medical practice in the state for gay and lesbian people. That's right -- most of the people dedicating their careers to HIV care don't like it.
Here's why this bill is a problem:
- It requires documentation that verbal consent for HIV testing was obtained. I've been told that in NY, where a similar law exists, many institutions haven't removed the requirement for written consent because of this provision -- patients still have to sign a form. In short, practice hasn't changed even though the law has.
- The definition of protected "HIV-related information" has been broadly expanded, with a requirement for written patient consent before this information is shared. As currently written, the proposed law would block clinician-to-clinician referrals if they are not in the same facility, or a simple release of information from a hospital to a community PCP -- discharge summaries, test results, diagnoses, medications. All would require written consent from the patient first. (Note that this goes well beyond the existing requirement for written consent to release medical records -- this we already do for everyone, not just those with HIV.) Needless to say, no other disease has this restriction, and to say this is an obstacle for good patient care is a huge understatement. How would this even be applied to electronic medical records, which are increasingly being used in the community?
- There is language mandating that primary care and ID clinicians must offer an HIV test to a patient unless it is documented that the test has been done before. Is there another screening test (colonoscopy, mammography, TB skin testing, hepatitis C) where a law exists that clinicians must offer the test? Does this increase a clinician's legal risks around HIV testing? And how do we access whether the test has been done if it's protected information, as noted in #2? Recommendations for HIV testing should fall under the province of clinical guidelines (such as those issued by CDC), not under law.
- There is no way to test critically ill patients who are unable to give consent unless they have a health care proxy to consent for them. Anecdote: I saw a 35-year-old woman with a large brain abscess late last year who was comatose. An HIV test would have been invaluable to help distinguish bacterial brain abscess from possible toxoplasmosis -- conditions which obviously require different therapies -- but she couldn't give consent and, as is very common in younger patients, she had no health care proxy. Wouldn't it make more sense to allow HIV testing in instances like this, where the treating clinician could provide better care if he/she knew the patient's HIV status? This is obviously how testing for other conditions in critically ill patients is done. Notably, the argument to allow testing for HIV in this setting was brilliantly made by a bioethicist writing way back in 2005.
- There is no way to allow testing of source patients in occupational exposures unless the source gives consent. In some states, antibody testing on previously-obtained blood samples is permitted. I've expressed this view before, but in occupational exposures, the benefits of knowing a source patient's HIV status extend to both the source patient and the exposed health-care worker. Shouldn't we do everything we can to make obtaining this information as easy as possible?
I know the proposers of the bill have the best interests of people living with HIV in mind, but the problems listed above suggest that clinicians were not part of the development process. Since the bill has been on the table, several HIV clinicians and researchers (including me) met with the sponsor to discuss our concerns, but to no avail. For the record, the bill is also opposed by the Massachusetts Medical Society, who articulated these concerns at a public hearing earlier this year.
So let's change the law, yes. But let's get it right please:
- Remove the requirement for written consent.
- Allow existing privacy protection statutes (which did not exist in 1986, when the current HIV testing law was enacted) to apply to HIV.
If you live in Massachusetts and care about this, find your Senator and Representative, and let them know that this bill is bad for patients -- and has the unintended effect of being discriminatory, leading to inferior care for people living with HIV.
You can bet I'll do the same.
Paul Sax is Clinical Director of Infectious Diseases at Brigham and Women's Hospital. His blog HIV and ID Observations is part of Journal Watch, where he is Editor-in-Chief of Journal Watch AIDS Clinical Care.