Against My Will but With My Consent?

A Story of Passive Relinquishment of Agency

The Event:

Three weeks ago, I tested positive for Tuberculosis. This was a completely unexpected result of an annual ritual of testing I reluctantly agree to in order to get the medication I need to manage my autoimmune disorder. I have been tested for Tuberculosis annually for about 6 years. To be honest, I never thought twice about it or what I was really agreeing to, until the results forced me to consider the ramifications of doing business with powerful systems that I am dependent upon to thrive.

It never once occurred to me I would actually test positive for Tuberculosis. I have never met anyone who has it. Blissfully unaware of the existence of latent Tuberculosis or false positive tests, I was stupidly certain I would never be negatively impacted by allowing others to dictate what testing I do in exchange for receiving the medication I need.

Anyone who believes we have an autonomy based medical system is either unaware of what consent means or naive. I was naive.

Medication that manages symptoms of psoriatic arthritis also reduces the effectiveness of my immune system, leaving me susceptible to diseases and illnesses. I consent to this risk when I take the medication. I am genuinely fine with the risk of catching more colds, illnesses, or diseases if it means I can move my body and be productive. I don’t place my increased risk upon anyone else. I don’t need people to change their lifestyles or behaviors for me. I don’t ask people to mask, vaccinate, or any other intervention in order to increase my chances of avoiding illness. My disease is mine to manage. I have no right to tell others how to manage their health and wellness. If I want to reduce exposure, it is upon me to choose what interventions I will implement for my body.

However, that is where my autonomy ends, and the intrusion from others begins.

The Backstory:

Because I become more susceptible to a communicable disease, I am forced to test for Tuberculosis or I cannot get my medication. There isn’t really an option for informed consent here. There is only acquiescence to the demand to test or go without the medication.

I do not wish to be tested. I have no desire to live a life of constantly checking for something for which I have no symptoms, data, or evidence exists within me. I do not fear the unknown that could be lurking places I cannot see. I just can’t live life like that. It is against my will to be tested every year for an illness I have no reason to believe I have.

However, I am forced to do so. Is that force coming from my circumstances or from more powerful entities that have determined prevention of potential illness to the group is more important than treating the existence of actual illness in the individual? I imagine that depends upon your perspective. If you prefer security over freedom, I imagine you see my situation as one that is forced by my circumstances. If you prefer freedom over security, I imagine you see force coming from those with the power to deny me the medication I need.

Since testing positive, I have rapidly learned of just how much agency I have been relinquishing by failing to consider the ramifications of testing for a communicable disease tracked by the government. Gone is the blissful ignorance of the consequences of going against my will in order to receive the treatment I need. Now, I have to answer to authorities I didn’t even know existed.

While there is federal tracking and research that occurs regarding communicable diseases, the federal government doesn’t typically apply legal force upon those who test positive. Laws, statutes, and rules regarding legal ramifications of testing positive of communicable diseases vary state by state and county by county.

The Legality:

Each state has their own laws and rules regarding communicable diseases. In some states, a person who tests positive is given educational materials and advice on how to treat the disease and prevent the spread of the disease. These states balance the rights of the individual with the health of the community. There is no force applied, only information and education. These states rely upon the integrity and will of the individual to protect those they come into contact with. The assumption is one of good intentions and a desire to be healthy.

In other states, the person who tests positive loses all autonomy over their healthcare decisions and freedom. Refusal to give information regarding contacts can result in invasion of space and privacy as health department officials seize control of any and all information and documents they can get their hands on regarding the movements and relationships of the person who tests positive. In addition, a refusal to take medication or to allow government officials to be present at the time of consumption of medication can be met with forced quarantine. Of course, all of these forceful measures are presented with a narrative about concern and care for the individual. These states assume bad intentions and a desire to harm oneself and one’s community.

I decided to do some digging and find out who exactly is placing the demand upon me to test for Tuberculosis every year and what options I have to fight those demands, if any. I live in a very “red” state, Indiana. The “right” likes to claim to be the party of individual responsibility and freedom. However, our laws regarding Tuberculosis are extremely invasive, removing all autonomy from the individual.

Indiana Law Specifically:

In Indiana, the state orders health care officials to investigate, treat, and case manage every positive case of Tuberculosis. What that means is that the statutes regarding Tuberculosis, IC 16-41-2, give authority to rules written, enacted, and enforced by the Title 410 Indiana State Department of Health.

Let me break that down a bit more. The actual state statutes don’t specify how investigations, treatment, case management, prevention of spread, or enforcement should be done in cases of positive Tuberculosis tests. What the statutes do is give the Indiana State Department of Health the authority to determine, write, act upon, and enforce their own rules. Thus, government employees who are not voted in now have the authority to force Indiana residents into testing, treatment, confinement, and disclosure of contacts. There are 85 pages of rules governing what state officials must do to an individual who tests positive for a long list of diseases and all of their contacts. In addition to the 85 pages of rules, there are separate documents giving rules regarding who is mandated, but the Indiana State Department of Health to be tested for what diseases when, regardless of a lack of exposure to or symptoms of the disease.

(On a tangential note, I would argue that Indiana is either not “red” or “red” is no longer the party of individual responsibility and liberty. To be clear, I am under no illusion the “left” or “blue” party is a party of individual responsibility and liberty. As far as I can tell, the concept of a Democratic Republic is dead in America.)

As best as I can determine, the Indiana State Department of Health is following the recommendations of the federal 1993 Recommendations of the Advisory Council for the Elimination of Tuberculosis (ACET). I am early into my investigation of how much laws have changed since 1993 due to a continual transfer of agency from individual to state under the guise of “group security.” I have a suspicion the Patriot Act following the terrorist attacks of September 11, 2001 and Covid regulations, mandates, and restrictions are also involved.

Consent or Coercion:

Dear Reader, I am not here to suggest I would refuse treatment for TB if I had it. I am not here to suggest I would refuse to quarantine if I had TB. I am not here to suggest I would refuse to alert all those I come into contact with of my positive status if I had TB. When I tested positive, I did alert everyone in my life, including my patients. I did quarantine from those at increased risk and social distanced from everyone else until my second test was done and I was cleared of symptoms of active infection. I was willing to take the treatment. I have no issue with doing any of those things.

I am here to tell you I have no agency or autonomy to make those decisions. Under the guise of protecting me from my own heightened risk, my state and my doctor have worked in tandem to remove my agency regarding what I get tested for, when, and how I respond to the results of any tests I consent to.

You see, it is unclear in the rules of the Indiana State Department of Health whether or not I have to be tested annually. It is generally recommended in the 1993 federal guidelines by the ACET that anyone who takes a medication that reduces their immune system response should be tested. However, there doesn’t seem to be a law or rule in existence regulating those of us on immune system suppressants on a federal, state, or local level that I can find.

With this lack of clarity regarding any law or rule enforced by the state, it has become clear my doctor has decided on my behalf what is in my best interest without any discussion with me. There is no law or rule, as far as I can tell, that I can be denied a prescription for any medication for refusal to test for TB. I am still researching whether my insurance company demands a negative test result prior to processing a claim for the prescription. I have called my doctor’s office and requested clarity on who is enforcing the testing for TB upon me in order to get my prescription for the medication I take.

Herein lies the precarious scaffolding of transfer of agency. Piecemealed together by a scattering of federal guidelines, state laws, health department rules, insurance company procedures, and medical professionals’ complicity; individuals are losing their right to deny consent to medically unfounded tests and give consent to necessary medications.

I have never had any symptoms of TB. I have never been in any environment with an increased risk of exposure to TB. There has never been any fact or data to suggest I should be concerned about or test for TB. The only justification for testing me for TB is a global fear of spread of a communicable disease. It has absolutely nothing to do with me, individually. Yet, my individual need for a medication can be denied. Thus, it is against my will that I get tested, but with my consent. But is it actually consent when it is coerced?

You see, the argument is that I do not have to consent to testing, but the doctor, insurance company, state, or federal government can respond by denying me necessary medication to treat an actual disease I have. My freedom to refuse testing is met with the “freedom” of any number of other individuals/groups to deny me care I need.

I argue that it is not consent that is being given. It is coerced compliance to a manipulative, more powerful entity. I either live in tremendous pain and experience weeks of inability to physically function. Or, I allow a medical system to take my blood, test it, and react to it with tremendous force against my freedoms and that of those in relationship with me. I am acutely aware, now, that my acquiescence to the demand that I be tested annually is also giving the government access to anyone in my life should I test positive. This puts into sharp focus the implications of my healthcare choices upon my family, friends, acquaintances, colleagues, and patients.

Conclusion:

Upon further testing, it has been confirmed I do not have latent or active TB. It is through this process I learned that 33% of positive TB tests are false. I was among those. Fortunately, my doctor’s office decided not to report me to the Department of Health unless my second test came back positive. I have no idea what risks they were taking by failing to follow the Indiana State Department of Health’s 85 pages of rules. I am sure it is possible they could be fined, shut down, or even have their licenses revoked.

It has not gone unnoticed by me that concern for the health of Americans is not universal or unwavering. Out of fear of the potential transmission of a disease that there is no evidence I have, I can be denied medication for a disease it has been established for years I have.

I realize the two diseases aren’t comparable. Psoriatic arthritis can’t be transmitted. It impacts no one physically other than the person who has it. Rather than be investigated, tested, treated, and managed as an actual detriment to the health of those within, it takes, on average, 2 years of fighting for the right tests and information to even get diagnosed with psoriatic arthritis. I was misdiagnosed 4 times and sent on endless wild goose chases of needless interventions while fighting to have my actual, existing symptoms taken seriously.

My point isn’t that all diseases should be treated the same or that there isn’t a greater community risk from some diseases. The need for a healthy community is important. The deaths of those who have suffered and succumb to Tuberculosis matter. The lives of those at-risk matter.

My point is that we are under an illusion of autonomy and consent in American healthcare. While we deny our interdependence in many ways (the reproduction of our species is a prime example), we simultaneously coerce each other into giving up agency for a sense of security.

I loathe the situation I am in. There is no way through this conundrum with my integrity intact. I have a responsibility to my ethics, morals, and values; including my belief that allowing the government and medical system to manipulate me into unnecessary testing is complicity with extortion, coercion, and force. I also have a responsibility to my children, spouse, mother, friends, patients, and community to be a productive member of society.

If I stop taking my medication in order to avoid an unnecessary test and potential government intrusion, I will cease to be a functioning, more or less productive, member of society. I will become entirely dependent upon my community for my survival. Should my community fail to support me, I become dependent upon the state. In either situation, I still lose my agency.

Yet again, like a million times before, I find myself at a crossroads of inability to balance the rights of the individual with the interdependence of the species. Yet again, I am reminded that the battles we wage against one another keep us from coming together to decide how much power we actually want to give those we pretend work for us: the government. We slip and slide down the slope of the transfer of agency from the individual to the state, virtue signaling our moral superiority along the way.