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Treatment Refusal = Criminal?

| 20 Comments
I was pleased to have the chance to speak at the Global AIDS Treatment rally at Dag Hammarskjold Plaza, in front of the United Nations, last Wednesday, June 8, in New York City.  The rally was organized by Health Gap, Housing Works and other organizations fighting for treatment choice and access for every person with HIV, an effort I fully support.

Here is an extended version of my comments (I only was able to deliver about half of this at the rally).
 
          

A continuing disregard and trampling of the human rights of people with HIV drives this epidemic and until we recognize and address this fact, we will not defeat AIDS. This is no more clearly evident than in the fact that HIV-related stigma is today increasing, not decreasing.


In 1983, the revolutionary Denver Principles manifesto began with a defiant statement that reverberated powerfully throughout the intervening plague years:  "We condemn attempts to label us as 'victims,' a term that implies defeat, and we are only occasionally 'patients,' a term that implies passivity, helplessness, and dependence upon the care of others. We are 'People With AIDS.'

What those early activists did not articulate, and probably could not have imagined, was that the label we would need to fight against three decades later is that of criminal. 

Sadly, the US is a global leader in HIV criminalization, exporting intolerance, ignorance and legal retribution around the world.  Criminalization creates a viral underclass in the law, which treats people with HIV differently for behavior that, for those who do not have HIV, is unremarkable.

In Texas a man is serving 35 years for spitting at a cop; In Iowa a young man was sentenced to 25 years in prison for having sex with a condom, while his viral load was undetectable. 

A woman in Georgia got 8 years for failing to disclose her status, despite the fact that it had been published on the front page of her local paper and two witnesses claimed she had disclosed.

There are hundreds of these cases and it continues to get worse. Just two weeks ago, the Nebraska legislature passed a bill that makes it a felony for people with HIV to sneeze or vomit in the vicinity of a public safety officer.

There is no more extreme manifestation of stigma than when government incorporates discrimination into the law, like with Jim Crow laws, or apartheid, or criminalizing people with HIV.

These laws are driven by a political and public policy leadership, abetted by the media, that increasingly, insultingly and irrationally defines people with HIV principally as viral vectors or potential infectors, as a dangerous population, a threat to society that must be regulated and controlled.  

This is not just in criminal prosecutions but it is also seen in HIV prevention and treatment policy-making that is veering towards the coercive, abandoning respect for individual autonomy and opening the door to tyranny, paternalistic or otherwise.

It is vital for all of us to understand how anti-retroviral treatment can reduce one's infectiousness, or provide some protection against infection for those who are negative. 

That fact, for many is reason enough to start treatment, including some who do not medically need treatment for themselves, like those with high CD4 counts. 

But it is wrong for anyone to assume everyone who has HIV "should" be on treatment in order to reduce infectiousness. 

To encourage healthier HIV positive people--those with high CD4 counts for whom it has not yet been proven will receive a net benefit from anti-retroviral treatment--to commence treatment while downplaying or disregarding the risks of serious long-term side effects is unethical and dangerous.

So while we advocate for treatment to be made available to all who need it, including the millions who will die in the next few years if they do not get it, we must also make sure that ethical challenges inherent in so-called "test and treat"--promoting treatment for a public health objective, at the potential expense of the individual person with HIV--are addressed. 

The Associate Director of the CDC, Harold Jaffe, says it is not clear that "test and treat" "benefits the infected people themselves and indeed it may be harmful".  He notes that test and treat "falls foul of the normal ethical standards of clinical medicine, which is to act in the best interests of patients."

Writing about test and treat, the Economist noted "people do not like taking medicine, particularly if they have no symptoms." 

For test and treat to achieve the desired societal benefit, they write, "all those people, or, at least, the vast majority of them, would have to be persuaded to take (anti-retroviral drugs). That is difficult enough when someone is ill. The latest report from UNAIDS suggests that almost one in five of those put on the drugs stops taking them within a year. It will be even harder to persuade the asymptomatic to pop a daily pill or two for the public good."

An avalanche of funding has provided an army of strategists and publicists to work with public health and community organizations to promote treatment to those for whom there is no scientific justification for such treatment.  That is appalling, especially when only 1/3 of those in immediate medical need of treatment are able to get it.

We must never forget harms that have been perpetrated in the name of a supposed public good and we must not, even inadvertently, contribute to those harms.

If we respect individual autonomy, we must provide objective information about both the potential rewards and risks of treatment without creating a false sense of urgency or need.  To do otherwise is profoundly unethical.

Pioneering AIDS doctor Joseph Sonnabend, wrote last week that "Respect for the autonomy of the individual may be the most important of the principles that form the foundation of medical ethics."

John Christman described an attribute of personal autonomy as: "the capacity to be one's own person, to live one's life according to reasons and motives that are taken as one's own and not the product of manipulative or distorting external forces."

The Economist noted test and treat will require a very high level of participation in order for it to work.  What if too few agree to participate for it to be effective? 

Do those of us with HIV present enough of a public health danger to trigger the use of legal mechanisms to intervene and force us to take treatment against our will?

There are times when we, as a society, impose medical treatment on some citizens, even against their will.  We do that with criminals. 

Might those who refuse treatment for the "common good" ultimately be considered criminals? Will they be seen as socially irresponsible, labeled enemies of society, selfish or unconcerned about spreading HIV?  Have we begun to stigmatize those who, for whatever reason, have chosen not to take treatment?

NAM's newsletter asked the question bluntly:  "How long will it be before legislators--or judges--conclude that failing to take available treatment should be considered as contributory negligence in cases of HIV transmission or exposure?"

Defining those of us with HIV as a threat to society and manipulating or coercing us into treatment, rather than empowering us to access healthcare and make well-informed treatment decisions for ourselves, is a dangerous threat to our rights.


Moreover, it will continue to fuel the epidemic, further disenfranchise the most at-risk populations and erode trust in the healthcare system, making people at risk less likely to get tested and, for those who need or want it, less likely to access treatment.


We are not criminals and we do not consent to coercion. 


Another important section of the Denver Principles reads that people with HIV have the right "To full explanation of all medical procedures and risks (and) to choose or refuse their treatment modalities."


We must be vigilant against a creeping criminalization of our existence, be vigilant against those will sacrifice our human rights at the altar of a perceived public good, and to be vigilant against the "arrogance of the well" that operates from an unstated but clear belief that we--those of us living with HIV--are "less than"; are inferior beings with inferior rights to their arrogant supremacy.



Sean on:

20 Comments

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Comments on Sean Strub's blog entry "Treatment Refusal = Criminal? "

Thank you, Sean, for continuing to ring this bell. It was especially interesting, and scary actually, to hear how two hot topics -- making criminals out of HIV+ people who dare to have sex or who might sneeze somewhere near you, AND the new prevention theory "test and treat" -- might intersect, and what the potential consequences could be.

What you're saying, if I have this right, is, if the law is going to treat those with HIV as criminals anyway (as all these prosecutions and new laws demonstrate), then it's a short trip on the Big Brother train before people with HIV are forced to undergo treatment, just as criminals are. That got my attention.

Rising stigma toward people with HIV and a widening paternalistic streak among well-meaning prevention advocates is a creepy combination. I hope we're all watching this debate very, very closely.

Mark S. King
MyFabulousDisease.com

Hi Sean: I see both sides of this story, although these prosecutions are not the side I see. What are the repercussions and recourse for individuals who are with partners, who knowingly infect them, and don't care? I honestly think that has to be addressed. Many people are having sex, unwittingly, with people who have secret risky sexual behavior issues. They need a voice in the conversation, but not the paranoid and insane voice that is permeating bad legislation. You know where I am coming from.
xoxo
Liz

@ Liz....Liz, I am sorry to say I am dissapointed in your comment. While I hope that someone who knows their status would disclose it to a person who they believe is not infected, you and others are effectively laying the entire responsibility on the person who is HIV+. Last time I checked, it takes 2 people to have sex.

The other party is just as responsible for transmitting the virus as the other person because, in most cases, they have a choice to use a condom. Using your argument, the sword can swing the other way to the un-infected person and effectively put the un-infected person in jail for having consentual sex without a condom. Anyone suggesting that we punish someone for having a disability is a cowardly, heartless, inhuman, and ignorant person who is acting out of fear and not objective judgement. Also, a study was just released that effectively stated that there is only a 4% chance of being infected by someone with HIV if they are taking medications even without a condom. The story above is clear and obvious criminalization and anyone who does not stand up for these people and their rights are no better than Nazi's. You are a horrible person for even suggesting punishing HIV positive patients.

Daniel,

your reply to Liz has purchase in THIS community, meaning the HIV positive community. outside of it, however, your reply is empty of power. there ARE HIV+ people who are cavalier about infecting others, i am horrified to say i've met some myself. while they are a tiny minority, their existence is an issue which adds frenzy and political heat beyond the scope of control.

the idea that an HIV- partner shares equal responsibility for an infection with an HIV+ partner is politically unsellable outside the POZ community, utterly so...especially at the legal level. ignoring that is a great way to lose influence.

I have to say it takes two to engage in sexual behavior and it is not right to make criminals out of one party and not the other. If two folks went and robbed a bank they both are criminals no matter who planned it. Pls people this is wrong and if you wnat to play then you should know the rules which are ask question! If you are stupid and irrespnsible about having sex then you are just as much at fault as the person who is HIV+! HTere is a lack of concern till you get causgt with your pants downa nd then all you wnat to do is play the blame game for it is every one elses fault. WRONG youa re a participanting adult and should reap what you sow ! How many times have you lied about things just to get laid!!!!

First and foremost: There is no justification nor rational to criminalise HIV-infected people and we must make sure this does not happen and ardently fight against any attempt to criminalise or enforce treatment.

However, how many people have a high CD4 at diagnosis justifying not offering immediate treatment? In the US and the UK more than 50% of those diagnosed with HIV ***NEED*** to start treatment at diagnosis. Most of the other will have to start within 2 years. It is even worse in Sub-Saharan Afirca. There is growing evidence that treatment does benefit even those who "think" they are healty and disregarding or ignoring it and questioning the "net benefit" of early treatment (because that is what Test and Treat means here) makes it a moot point.

There IS a sense or urgency in a world where two-third of those in need of treatment are not receiving it, where 2.5 individuals are infected for every one receiving ***delayed*** treatment. Fuelling a paranoya around early treatment is only contributing to fueling stigma around the epidemic and the disease, and will certainly not contribute to empowering people to access treatment or will to access it, whilst mainstreaming it would be much more beneficial both to the individual and the society. Coercion and criminalisation are real issues but there are many more pressing and relevant issues to address in today's management of the epidemic and considering the side effects of these could be more useful.

Such response to the test and treat approach reminds me of activists demonstrating against the conduct of the PrEP trials some years ago in Cambodia and Cameroon. Trials which since have been conducted elsewhere and whose result are potentially new prevention tools to the limited one we have.

The approach raised many concerns and we should not be affraid to raise them, but we should also recognise which one are critical before derailing a potential life saving intervention.

The voices I would want to hear more of are not that of those who live in the developped world and benefit from treatment (and a tribune on the Internet), but that of those who live in the countries most affected and for whom accessing treatment is a struggle at many levels.

These voices need to be heard because they are the prime target and potentially beneficiary of test and treat which remain ONLY one aspect of Combination Prevention.

The use of HAART to prevent transmission is a dangerous strategy. Low viral loads at any point in time do not mean that viral loads will stay low. Furhtermore if transmisssion occurs in a HAART regime the virus transmitted will be multi-drug resistant.

It is hard to see how a court could enforce an effective treatments regime outside of a prison system, even within prison it would be difficult.

For many long-term survivors like myself, there are no classes of HIV medication which have any beneficial effect, all the doctors can offer is increasingly heavy doses of 5 drugs or more (
'salvage therapy'). It is very easy for people around us to say "grasp at every straw", but I've had a good life, at least twice as long as I expected, done a lot more than I ever expected. I'm over ctutching at straws.

I certainly do not wish to be criminalised for taking control of my life. To be threatened with criminalinalisation for such a shakey public-health theory is doubly insulting.

I believe that a balanced and fair approach is needed when it comes to this issue. Science has shown that the risk of HIV transmission is dramtically reduced when a person has undetectable viral load. It is a slippery slope when society stigmatizes a group of people based on their health status. I believe if a person is practicing safe sex and has an undetectable viral load, having sex is not a criminal offence. What is often missing from some of these irrational "fear based" debates is an effort to follow the science and not the fear.

i think what gets lost in these debates is that most of the egregious prosecutions of HIV+ people are unconstitutional to begin with. the Nebraska law making certain autonomous bodily functions like sneezing or vomiting a felony for HIV+ people is a case in point, as is the case of the woman sentenced to 8 years for "failing to disclose" despite 2 witnesses and a newspaper's front page indicating otherwise.

in these and other cases Sean has mentioned, the convictions are patent violations of basic Constitutional principles regarding evidence of guilt. i think these violations are much more powerful and politically sellable, such that legal appeals could be marketed toward review by the Supreme Court.

The HIV+ community overburdens any effort to get HIV+ people fair and equal treatment before the law when it veers off into claims of equally shared responsibility for infection-prevention...that belief forms a consensus amongst the HIV-advocate community, but it's just not a belief shared by legal community or by the US population in general. far from it.

This is why Daniel's response to Liz is so distressing to me. most of the US population will sympathize with Liz over Daniel, and it's no contest at all. failing to understand that will leave our community spinning its wheels while these despicable prosecutions continue. even Sean has indicated his support for prosecuting those rare-but-notorious cases where an HIV+ person (usually a man) has been egregiously callous about infecting others and not revealing + status. it is politically radioactive to do otherwise, frankly.

furthermore, i think it's very premature to be worried about legally-forced treatment...these prosecutions basically testify to the reality that the legal community is nowhere near that evolved, and all HIV+ people (treated or untreated, conscientious of others or not) are in legal danger as a result.

'I believe if a person is practicing safe sex and has an undetectable viral load, having sex is not a criminal offence."

This begs a couple of questions;

When in relation to the sex has the previous test showing undetectable viral load been taken?
The reality is treatments can fail with no prior indication. As an anecdotal case my viral load was undetectable for 11 years but in the interval between 2 scheduled tests ballooned out to 50 000 copies. My final undetectable VL result created only an illusion of reduced infectivity, it did not reflect any reality. This is why I feel the treat to prevent transmission model is fatally flawed.

Do we 'license' certain sub-classes of positive people (based on test results, time since last results and treatments regime) to have sex but not others?

I can remember during my medical appointment when my blowout result came through, my physician repeatedly insisted I must have been non-compliant with my medication regime. If my medical caregiver wants to blame his patients without any evidence what would my chances be in a court of law? I've switched doctors since.

Thank you.

Being newly diagnosed, I've been skeptical of the (CDC & physician) recommendation to start ARVs at just above 500 cd4 count when it has historically been 200. That seems like a huge gap in the progression of virus, and I've found no conclusive study finding benefit. (Perhaps I read somewhere that one in progress and due out in 2-3 years?) It just didn't sit well based on impulse or instinct or whatever you want to call it. I couldn't help but wonder who's best interest was at the base of this decision, and why the folks at my city's largest HIV advocacy group push the idea without question nor answers. Specific information on the subject has proven difficult for me to obtain, so again thank you for the article- it has provided a bit of clarity and of course it's comforting to know I'm not alone with my concern regarding the ethics surrounding this subject.

Keep up the good work! :-D

I want to say to Sean Strub...I totally love you man. Your passion, devotion, all the energy you send out to the world... I first heard of you and the POZ magazine back in 1994 and you have been a lifeline to me in my space on this planet. It brings tears to my eyes listening to your words on each and every topic...yes, it is tough and we must be aware of the struggles that face us as HIV positive people. I want to send you all the light and love I can as we are so far apart in miles, but know that you are with me in my heart and spirit today, as you have been for the many years that I have been one of your greatest fans...my prayers are with your intentions and my blessings for all that is good is upon your path. Peace, Love, and Joy my friend! A west-end boy in Seattle, Chuck x o

Although I am concerned about the criminalization of HIV positive people based on hysteria and lack of scientific information regarding transmission risks, but having been infected by someone who knew his status when first had sex (which did not include anal sex or anything close to it but included unprotected oral sex based on the long standing myth in the gay community that you can't get it that way), was not responsible enough to get himself on treatment considering he was sexually active and did not disclose until AFTER having our sex, because at that point he was actually interested in pursuing the matter further, I think I have two cents to add to the discussion: willful misconduct by a person cannot be equated ethically or morally to the negligence or lack of information on risk reduction strategies by another. The fact is that I am now HIV positive, and my life and professional prospects and future plans have been obliterated forever, to be substituted by those prospects and future plans which may be achieved within the realites and constraints of all sorts that the infection brings, not least among them, structuring your life, not around what you want to do professionally, but on the availability of a health plan that will cover the cost of your medications. Not to speak about the endless anti HIV pill taking and doctor visiting, and well as the other drugs I take to manage the anxiety, the depression and the solitude that HIV brings, because political correctness aside, having HIV is about the worst feature to advertise in the gay dating world. I feel no sympathy for the man who changed my life for the worse or anyone who behaves like that or for the legal or other consequences for their disregard for the value of the people that they have sex with. Indeed, if could fry him, I would. To embrace the notion that equates the responsibility of a person who actually knows he has the virus and knows the life changing nature of an infection on the other person and his family, then I would have to conclude that I should also merrily go around penetrating other men without condoms even if they do not have the information or self esteem to demand a condom be used and then blame them for their infection.

Jeton - you misunderstand my post, I am not defending those who intentionally choose to infect other. I am defending the decision of others to take away the rights of, and criminalize ALL HIV people simply because they are HIV +. Furthermore, my comment where I stated that you cannot put the blame solely on the shoulders of the HIV+ person has merit because it is a well publicized FACT how HIV is transmitted. If you are going to criminalize someone who is HIV+ for not using a condom, then you also need to criminalize the uninfected person who did not use a condom because they to took part in the transmission of HIV. Even if they do not know the other person is HIV+ they still know how it is transmitted and therefore also have a responsibility to protect themselves. If the uninfected person does not use a condom, then it is reasonable to assume that they accept the risks that come along with that because HIV is so well publicized. As you can see, there is a flaw in your logic. If you are going to advocate criminalization, even those who purposely infect, then you must criminalize the uninfected party who also made the decision to participate because the other HIV+. The only exception to this would be in an instance of rape where the uninfected part was not given a choice and was infected by force. What is the saying 'People who live in glass houses?' Discrimination is a funny thing. Therefore, both you and Liz would be discriminating against the HIV+ person because a person is not completely innocent simply because they are HIV negative. It would be like someone tanning without suntan lotion even thoug it is well known how you get cancer? Your logic suggests we should criminalize that person for giving themselves cancer. Think before you speak.

Jeton - In response to your comment that it is premature to talk about forced treatment. When I start reading articles where something like this is even suggested, then it is ABSOLUTELY time to start discussing the topic. There is never a bad time to discuss equal rights and defend against discrimination.

While your take on criminalization may be easier to swallow for those who are not HIV disabled, it hides and sheds no light on the shared responsibility of someone who is not infected and allows the persistance of the spread of HIV. I find this equally disturbing that you cannot acknowledge this simple fact. After all, the HIV+ person was negative as well before becoming infected.

Daniel, your logic is circular, insular and "politically quarantined". the responsibility that HIV-negative people have to keep themselves uninfected will never politically or legally equate with the responsibility HIV-positive people have to disclose our status to our sexual partners.

i understand the emotions and reasoning that lead you and many others into this circular thinking, but i'm also terribly aware that your point is dead-on-arrival outside the HIV-activist community. Our activist community has taken your position for decades, yet egregious prosecutions of HIV-positive people only grow more numerous.

that SHOULD tell activists something, but it's clear many in the HIV+ community don't want to face the real possibility that this tactic has been politically backfiring for decades.

for my part, i tell all my fellow HIV+ friends and acquaintances to guard their legal rights and legal safety jealously. i tell them to carefully and verifiably disclose their status to all partners b4 sex, preferably online or in front of reliable witnesses.

once in awhile, a friend will reply "i know disclosure is, like, really controversial and there's many opinions on it"...and i have to remind him or her that ***outside of the HIV+ community, there is no controversy whatsoever...there is only the broad consensus that disclosure is mandatory, and should be enforced with severe penalties***.

telling HIV+ people in the USA to disclose their status to sexual partners only at their own discretion is rather comparable to telling gay teens in homophobic households or gay adults in Saudi Arabia to come out of the closet...it's VERY easy for you to say but does little more than set that person up for danger and peril. it's an indulgent and irresponsible moral posture.

it is my fervent hope that the legal assault on HIV+ people is obliterated by a true Cure, but failing that, mark my words: in 20 years there will be more prosecutions of HIV+ people, especially for "she/he-said vs she/he-said" non-disclosures. i'm well-aware that many hope this particular issue is winnable (Sean's writings on the matter literally glow with this implication), but i see no evidence of that at all...quite the contrary.

demanding equally shared responsibility for infection-prevention will probably remain an intellectual fashion in our community, but politically it will continue to backfire, resulting in further legal defeats...particularly of innocent people already victimized by a virus and by stigma.

OF COURSE i know that saying this HERE is like talking blasphemy to a wall, but the issue is too grave to simply remain silent.

I find it disturbing in this debate that the invisible foundation of the agruments seems to be that HIV infection ONLY happens through sexual conduct. As one of the longest living survivors (since being told I had a strange ENZYME in my blood in 1979) with HIV, I MUST remind all of you that sex is not the only mode of transmissionm for HIV. I NEVER had unprotected sex, I believed in Medical Professionals and their OATH, and yet it was these same medical professionals whose actions resulted in my HIV infection! ANYONE who engages in sex without a CONDOM needs to be an adult and face the consequences of that decision. Otherwise keep it in your pants and out of someone's butt or mouth! PERIOD! Meanwhile, giving ART to people not in IMMEDIATE need of same to save their lives, is an ethical issue and disturbing in the extreme. As disturbing as the willingness everyone seems to have to sit back and say and do NOTHING while being confronted with the Stigma attached to HIV infection. I ONCE had a doctor who upon my initial examination with her, found out I was HIV positive (because I disclosed that, knowing it was true even before having frozen blood tested later on and getting the results that I was indeed positive as far back as 1981 when I had the blood frozen)moved her chair back when I coughed. As though the virus was Air-Borne. Did I sit back and TAKE the discrimination and ignorance? NO!!!!!!! I went the distance and had her license YANKED PEOPLE! We need ACCOUNTABILITY in our Legal and Medical Communities, not just PABLUM.

P.S. As for the criminalization of people with HIV. MANY of us in the early days of the AIDS PANDEMIC were (rightfully) concerned about ANY list, under anyones' jurisdiction that listed NAMES of people infected with HIV, suggesting instead that a randomization protocol would work to preserve anonymity and everyone's legal rights to confidentiality and hence stave off prosecution by fear mongers. The choice the general PUBLIC made over 20 years ago has now come full circle and the bad decisions of those years are now due and payable. The only thing that will change ALL of the relevant issues for the HIV COMMUNITY is COHESIVE POLICY! on ALL FRONTS. Medical, Societal, Legal and Personal. PERIOD

I was shocked and appalled from what I am reading. The constitution right of privacy protected under the first and fourteenth amendements should cover a persons right to do whatever they want with their own bodies.(Used in Roe V Wade a womans right to choose to abortion.) There is no mention of holistic protocals as alternatives. There is a whole underground of health oriented treatments available since the early 80's. If I became HIV positive I would look into alternative medicines through a licensed Naturopathic doctor (licenced by the AMA)or an OMD. I am a cancer survivor and quit the chemotherapy program.I took responsibility for my own DIS-EASE. I wouldn't be here if I hadn't. No one has the right to tell anyone what the have to do to their own body.

In Austria Europe there is a case of Barbara Seebald - a woman with HIV (she is a HIV denialist) who refused ART treatment and delivered a baby. She was sentenced for imprisonment for causing grevious bodily harm.

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This page contains a single entry by Sean Strub published on June 12, 2011 9:59 AM.

BREAKING NEWS: PREP TRIAL HALTED was the previous entry in this blog.

Denver Principles Empowerment Index & A Brief History of the Empowerment Movement is the next entry in this blog.

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