The Current Dangers of MHS in a Trump Administration
Brooke Davidoff, PWN Kansas City State Lead

As we internally freak out about friends, family, and neighbors being deported and quickly becoming victims of Trump’s racist regime’s illegal policies. I’m sure some of us in the community, who know about Molecular HIV Surveillance believe we’re not much safer than them. 

What is Molecular HIV Surveillance, (MHS for short)? That’s an excellent question. Let’s begin with what we are told first, it begins with a blood test that’s purpose is to research the genetic make-up of your individual strain of virus. It is translated into digital format and shared inter-institutional results from clinical blood tests are re-used by public health authorities without our knowledge or consent for surveillance purposes. ‘Cluster’ identification is used by public heath authorities by using genetic sequences. The claim is that MHS is used to prevent and protect communities from the spread of HIV. It’s said to track clusters (people) and outbreaks, so they can trace them back to who is the culprit out there HIVing all over the place. “MHS data has been useful in identifying new HIV outbreaks within specific communities and has allowed public health officials and community organizations to respond to these outbreaks with additional support and resources to impacted individuals and communities,” per Presidential Advisory Council on HIV/AIDS or PACHA, (75th PACHA Full Council Meeting October 17, 2022.) 

If they truly cared about stopping the spread of HIV, they would test everyone. Like people who have unprotected sex, and they would test them often. Not once a lifetime which is the currently recommendation for heterosexual people. PrEP would be promoted and brough to negative women’s attention in OBG appointments, especially ones who come in with other STD’s and STI’s, and women of color but that’s another issue for another paper. They could set up huge testing events like they did for Covid. Countless symptomless people have no idea about their HIV status, and they are having condomless sex, and sharing needles. Per the Denver Principles recommendations they stated, “Not to scapegoat people with AIDS, blame us for the epidemic or generalize about our lifestyles.” Prevention on their side would involve action, and education to let everyone know they are at risk, we know that’s not their plan.

In the hands of this administration, and I am horrified they have the power to access our private what we thought was HIPPA protected information. Endless unchecked power unleashed without any safeguards to protect We The Positive People of America, and our raw data has been collected and kept in health departments and CDC files. Perhaps only a Sharpe and an executive order separates the Tyrant in Chief and his administration from our medical HIV information, it’s probably neatly waiting on a giant excel spreadsheet. 

Informed consent, or lack of it in areas like this are dangerous. The importance of informed consent, which was brought to life after the Nuremberg Trials as we do not trust these systems nor their intentions for the people they currently serve. I work in an ID clinic most of the staff I have asked in my office have no idea what MHS is. They have no idea what happens to the blood of their patients, or co-workers once it’s sent down the street to the Health Dept. Part of informed consent has to do with medical providers explaining to their patients’ rights to bodily autonomy and integrity which is supposed to be enshrined in medical ethics, research ethics and laws. 

Some additional issues with MHS per PACHA “MHS activities are currently being implemented in multiple states across the U.S. that actively criminalize persons living with HIV for non-disclosure, exposure or transmission-often without understanding the incorporation of basic scientific principals-concerning HIV, including that when a person living with HIV has an undetectable viral load, that person is unable to transmit the virus to sexual partners commonly known as “undetectable equals untransmittable”. MHS and cluster detection response are part of ‘Ending the HIV Epidemic’ or EHE’s National HIV/AIDS Strategy.  

The newly nonfunctioning CDC soon in the hands of Robert Kennedy Jr. is a health and safety hazard to us all. As we learned last time Impeachment is just a word with powerless meaning and soon his financially entitled cabinet purge programs they have no idea what they do and have no care for the people being tossed aside because of it. “Currently, over 20 states have rules on the book about how law enforcement can access public health data, ranging from just asking for it to needing a court order. NASTAD has a really handy interactive map that you can use to see what those rules are in your state.” (National Alliance of State & Territorial AIDS Directors) 

A family tree of our tracked molecular data linking who we’ve been with virally. Analytically and genetic sequences are linked to other demographic information like age, race, sex at birth, citizenship, drug use history, sex work history, sex practices and whatever else is shared inside what we believe is the safety of the clinic. Data is not benign, and it can easily become weaponized. This data can be utilized to target mostly socially marginalized undocumented people, drug users, trans people, and sex workers often the same groups of people who are targeted for criminalization in America. 

At first the fear of writing this article had me tongue tied, blank paper was a challenge. If my patients knew no informed consent is needed for our information’s keeping, studying, tracking by the Center for Disease Control, World Health Organization, our local health departments, the National Institute of Health. 

My articles are kept on a website called Muck Wrack, in journalism one of my favorite people to learn about was Nellie Bly, if I’m afraid to have his published or posted which is proof of why it needs to be written. The last search of me on my LinkedIn page was done by The Federal Communications Commission for who knows what reason. We all know our information is not safe online, how often do you get an email from some company that their security system was breeched, and you should monitor your credit. Opening a credit card with stolen information is one thing, accessing and outing HIPPA protected people’s HIV information could put people’s lives at risk. Public health is often at odds with bodily autonomy and integrity as the ethics of public health aims to suspend the rights of some people for the benefit of the rest of the population. 

I’ve been inside the halls of a handful of ID clinics across the country, not one has ever mentioned MHS to me as a patient or an activist/ blogger. The Ryan White Planning Board never discuss these invasions on the people who they represent and vote for. An open and honest community chat about patient’s rights, or lack of them never seems to be on the schedule. Changes need to be made for the rights of patients beginning with open and honest communication from providers. Inform people living with HIV about how their blood and data is being used for MHS and give them the opportunity to opt out without fear of negative consequences to their HIV care and treatment going forward.  Secondly, implementors of MHS should publicly advocate against punitive or coercive laws and policies amid PLW HIV and ensure that MHS is never used in criminal, civil or immigration investigations or prosecutions. No other diagnosed people are charged with being the reason someone else acquired their diagnosis. One of my best friends gave her husband Covid, she survived, it killed him. She has not been charged or locked up for his death nor should she. The ridiculousness of the idea that MHS would stop people from acquiring HIV is simply not what it does, once people know about MHS it will in fact make people less likely to want to be tested. If you don’t know your status you cannot be held accountable for sharing it with others.