What’s the Matter with Indiana?

Note: The Bioethics Program blog will be moving to its new home on April 1, 2015. Be sure to change your bookmarks to http://bioethics.uniongraduatecollege.edu/blog/

by Sean Philpott-Jones, Director of the Center for Bioethics and Clinical Leadership

With all of the hoopla over Indiana’s recent enactment of its Religious Freedom Restoration Act (RFRA), a poorly-written law that gives businesses and individuals broad license to discriminate against members of the lesbian, gay, bisexual and transgender community, another travesty unfolding in that state has gone overlooked. Specifically, Indiana is experiencing the largest outbreak of HIV in the Hoosier State’s history, an epidemic sparked in part by partisan politics.

Just last week, Indiana Governor Mike Pence declared a public health emergency in Scott County after 79 people tested positive for the virus that causes AIDS, an outbreak fueled by rampant injection drug use. In past years, that rural county saw an average of only 5 new cases of HIV infection annually.

So what does partisan politics have to do with this public health emergency? Plenty. Consider, for example, Indiana’s ban on needle exchange programs.

HIV, hepatitis C (HCV), and other blood borne diseases are readily spread between drug users who share contaminated injection equipment. One of the easiest ways to prevent the spread of HIV among injection drug users (IDUs) is a needle exchange program, which allows drug users to obtain sterile syringes, hypodermic needles, and other paraphernalia without a prescription and at little to no cost.

Dozens of studies conducted in the United States and overseas have shown that needle exchange programs work extremely well. Among IDUs in New York City, for example, rates of HIV dropped four-fold when needle exchange programs were first introduced. In fact, the effectiveness of these programs in reducing rates of HIV infection among injection drug users is so great that US Office of National Drug Control Policy, the US National Institutes of Health, the US Surgeon General, the US Centers for Disease Control and Prevention, the American Medical Association, the World Health Organization and the United Nations Office on Drugs and Crime all encourage their use.

Despite this, needle exchange programs are still banned in 24 states, including Indiana. What is the argument that predominantly conservative politicians use to oppose these programs? That they encourage illicit drug use. But even this claim lacks credence. One study conducted in San Francisco found that drug use dropped three-fold among IDUs who used that city’s needle exchange program. Most of these programs also provide peer education and referrals to treatment clinics, helping participants break free of their drug addiction.

Thankfully, Governor Pence finally (sort of) gets it. He recently announced a 30-day moratorium on enforcing Indiana’s ban, stating that “I do not support needle exchanges as anti-drug policy, but this is a public health emergency. I’m going to make a decision on the best science and the best way to stop this virus and this outbreak in its tracks.” Public health officials in Indiana can now implement a needle exchange program should they want to. While it is too late for the 79 newly infected residents of Scott County, such a program may slow the spread of HIV to other Hoosiers.

Indiana’s now-suspended ban on needle exchange programs aside, politically motivated spending cuts are also to blame for the outbreak in Scott County. That county has been without a HIV testing clinic for nearly two years, the direct result of partisan wrangling about abortion.

Until 2013, the Scott County Planned Parenthood clinic was the sole provider of HIV counseling and testing in that rural community. That facility closed after Republican lawmakers cut state funding of Planned Parenthood because of their opposition to abortion. As a result, five clinics run by Planned Parenthood of Indiana & Kentucky were shuttered, including the one in Scott County.

None of those five now-closed clinics provided abortion services. Rather, like most Planned Parenthood clinics nationwide, they mainly provided other desperately needed health care services to poor men and women. Those services included family planning counseling; pregnancy testing and prenatal care; screening for breast, cervical and testicular cancer; testing and treatment for sexually-transmitted diseases; and HIV testing and education. Those services are now largely unavailable to the economically disadvantaged residents of Scott County.

In their zeal to demonize and defund Planned Parenthood over abortion, a still legal medical procedure that accounts for less than 3% of the total services that organization provides, Indiana lawmakers thus created the very conditions needed for an outbreak of HIV to occur.

Sadly, those conditions are being replicated elsewhere. Just last week, for example, Texas lawmakers announced a plan to cut $3 million from state-run HIV prevention programs and redirect the funds to faith-based abstinence-only education projects. That state currently ranks third nationwide in new HIV diagnoses. It is now likely to claim the top spot, a rather dubious honor.

So long as conservative politicians continue their efforts to defund Planned Parenthood, continue their ideological opposition to needle exchange programs, and continue to prioritize the needs and goals of their corporate donors over the health and welfare of their own citizens, outbreaks like the one in Scott County will continue to occur. I only hope that voters finally sit up and take notice of the very real public health threat that these policies present.

[This blog entry was originally presented as an oral commentary on Northeast Public Radio on April 9, 2015, and is available on the WAMC website. The contents of this post are solely the responsibility of the author alone and do not represent the views of the Bioethics Program or Union Graduate College.]


The Boys in the Ban

by Sean Philpott-Jones, Director of the Center for Bioethics and Clinical Leadership

For over 30 years now, the United States Food and Drug Administration (FDA) has banned blood donations from gay and bisexual men. It is a lifetime ban. Currently, no man who has ever had sex with another man can donate blood in the US.

The same is true for tissue donations. Just last year, for example, the FDA refused to accept for donation the eyes of an Iowan teen after learning that the boy was gay. When 16-year-old Alexander Betts committed suicide after months of bullying at the hands of classmates because of his sexual orientation, just a few months after he signed up as an organ donor, his family honored one of his last wishes by donating his organs and tissues. But while his heart, lungs, kidneys and liver were used to save the lives of six other people, the donation of his eyes was rejected because “tissue from gay men carries an increased risk of sexually transmitted diseases, including HIV/AIDS.”

The ban on blood and tissue donation from gay men was put in place in 1983, shortly after HIV, the virus that causes AIDS, was first isolated. It made sense at that time. Along with other socially or economically marginalized groups like injection drug users and commercial sex workers, during the early years of the AIDS epidemic gay men were — and still are — at increased risk of acquiring HIV. Banning donations from groups who were more likely to be infected with the virus, particularly when there were no effective treatments, was a logical step to protect the blood supply from contamination with HIV.

This was in part because the first tests to detect the virus in the blood of infected individuals were notoriously inefficient. In fact, these first tests didn’t — and many modern HIV tests still don’t — test for the presence of the virus itself. Rather, they test for the presence of antibodies to HIV.

Antibodies are proteins produced after the immune system encounters a foreign body like a virus, a bacterium or an allergen. They specifically recognize and bind to these pathogens, hopefully neutralizing them before they can infect a person and cause disease. Most vaccines are designed to trigger an antibody response to common infectious agents, such as those cause measles, chicken pox or hepatitis, in order to protect people exposed to those diseases.

Unfortunately, the antibodies produced by the human body against HIV are not protective. But they are a marker that a person has been exposed to HIV, and likely been infected. But an antibody response to HIV can take days or even weeks to develop after infection. So tests that look only for the presence of antibodies to HIV can miss those individuals who are recently infected. If these people give blood in the interval between when they were infected and when they develop an antibody response to HIV, testing their blood will suggest that it is clean even though it may contain live virus that can be spread to transfusion recipients.

But as a team of researchers as Harvard Law School point out in a recent article in the Journal of the American Medical Association, times have changed. HIV testing technologies have dramatically improved in the three decades since the virus was found. Modern antibody tests are much more sensitive, detecting anti-HIV antibodies much earlier in the infection process. We also have inexpensive and reliable tests that look for the presence of the virus itself. Used in combination, these tests can determine if a person has been infected within just a couple of days of exposure. They are a quick, cost-effective and largely infallible way to screen the US blood supply.

Given this, it seems rather unconscionable that the FDA continues to maintain a lifetime ban on blood donations from gay men. This is particularly true when you consider that other groups at high risk for HIV do not face a similar ban. For example, the ban on blood donations from men who have had unprotected sex with women who are known to be HIV-positive is only one year in duration, not life. The same is true for women who have had sex with an HIV-positive male partner. So it’s not the gender of the infected partner that matters, only their sexual orientation.

Moreover, in countries that have lifted the lifetime ban on donations from men who have sex with men, no concomitant increase in the incidence of transfusion-acquired HIV has been seen.

Finally, in 2010 an FDA advisory committee concluded that the lifetime ban keeps many low-risk men from donating to the nation’s blood supply. But despite this, the committee voted to keep the ban in place.

So why does the lifetime ban on blood donations by gay and bisexual men? It is sexual behavior not sexual orientation that determines whether or not an individual is at increased risk of HIV. A promiscuous heterosexual college student is a far greater risk than a gay man who has been in a long-term monogamous relationship.

Quite simply, the ban is purely discriminatory in nature. It does little more than perpetuate outdated and homophobic stereotypes. It also contributes to widespread stigmatization of sexual minorities, leading to the open hostility and institutionalized violence that lead young men like Alexander Betts to end their lives.

We can do better. It’s time to end the lifetime ban on blood and tissue donation by gay and bisexual men.

[This blog entry was originally presented as an oral commentary on Northeast Public Radio on August 28, 2014, and is available on the WAMC website. The contents of this post are solely the responsibility of the author alone and do not represent the views of the Bioethics Program or Union Graduate College.]

Living With HIV/AIDS Should Not Be A Crime

by Sean Philpott-Jones, Director of the Center for Bioethics and Clinical Leadership

It went largely unnoticed by the public and the press, but last month Iowa’s Senate and House of Representatives did something groundbreaking. With broad bipartisan support, that state became the first in the country to repeal and replace its existing HIV criminalization law.

Prior to this repeal, Iowa was one of 34 states to have a law that explicitly criminalized exposing an uninfected individual to HIV through sex, shared needles or other routes of transmission. Those of us who reside in the Northeast — particularly those living with HIV/AIDS — are fortunate in that the states in this region of the US do not criminalize HIV. Others are not so lucky.

States such as Iowa, Michigan and Texas passed these criminalization laws in response to the 1990 Ryan White Comprehensive AIDS Resources Emergency (CARE) Act. That Act, which proved public funds for treatment and care of those living with HIV/AIDS, also required each state to certify that it had laws that could be used prosecute those who knowingly exposed others to HIV.

The states already had adequate criminal laws to prosecute the malicious transmission of HIV, usually through existing assault statutes. Despite this, in accordance with the requirements of the Ryan White CARE Act and in response to several high-profile transmission cases (including the 1996 incident when Nushawn Williams was charged with intentionally infecting 13 women and girls with HIV in New York), legislators were quick to pass laws that explicitly focused on persons living with HIV/AIDS.

Twenty-four states, for example, passed legislation that required people with HIV to notify their sexual partners of their serostatus. Fourteen states also passed laws requiring disclosure of HIV status to needle-sharing partners. Other states also make it a crime for an HIV infected person to spit or to touch another person with their blood or saliva.

Until last month, Iowa had one of the strictest laws on the books. Iowans living with HIV/AIDS faced up to 25 years in prison and inclusion on the state’s sex offender registry if they could not prove that they had disclosed their HIV status to a sexual partner. This was true even if they practiced safer sex and even if that person remained uninfected.

Moreover, the burden of proof was on the accused. Iowans living with HIV/AIDS were ‘guilty until proven innocent,’ as persons charged with violating the transmission statute had to show that they disclosed their status to the sexual partner rather than the other way around.

Thankfully, that law has been replaced. Iowa’s new statute takes into account such important factors as whether or not safer sex precautions were used, whether or not transmission of the virus actually occurred, and whether or not the person intended to transmit HIV. The names of those convicted under the old law have also been expunged from the sex offender registry.

Hopefully, the 33 other states that still have HIV criminalization laws will soon follow suit. This is because such criminalization statutes do little to prevent the spread of HIV. In fact, they may even exacerbate the very problem they were intended to prevent.

Currently, the only successful defense to prosecution under most HIV criminalization statutes is either a claim of disclosure (often hard to prove given the one-on-one nature of most sexual encounters) or ignorance of one’s HIV-positive status. Seeking voluntary HIV testing can make a person criminally liable for normally legal conduct: consensual sexual activity. This not only adds to the still rampant discrimination and stigmatization of those living with HIV/AIDS, but also discourages at-risk individuals from seeking testing because of fears of legal prosecution.

Those who know they are HIV-infected become legally obliged to disclose their HIV status to long-time, casual and even anonymous sexual partners. By contrast, people who frequently engage in unsafe sexual encounters but who do not know that they are HIV infected — even if they have a strong reason to assume so, based on behavior — are under no legal obligation to disclose this information to a sexual partner.

There can be no doubt that is a deterrent to HIV testing. Many at risk-individuals may be discouraged from seeking HIV testing because of fears of legal prosecution, despite the fact that testing and treatment could not only preserve the lives of those with HIV but also reduce the likelihood that they will transmit the virus to others.

We know, for example, that treatment of those living with HIV/AIDS is as effective in terms of reducing the risk of HIV transmission as using condoms. New antiretroviral drugs can essentially render a person non-infectious, but that can only achieved if people seek testing and treatment. HIV criminalization laws discourage this.

This is not to say that particularly egregious, intentional and malicious cases of HIV transmission shouldn’t be prosecuted, but existing criminal assault laws cover that. But it is unreasonable to continue to require HIV-infected people to disclosure their serostatus to sexual partners if they have undertaken the necessary precautions — practicing safer sex and seeking treatment — that makes transmission exceedingly unlikely.

It is ironic that these criminalization laws actually encourage the very act that they were designed to prevent: the wanton and callous spread of HIV.

[This blog entry was originally presented as an oral commentary on Northeast Public Radio on June 5, 2014, and is available on the WAMC website. Portions are also adapted from an article written by Drs. Udo Schüklenk and ean Philpott-Jones and published in the August 2011 Issue of the International Journal of Law in Context. The contents of this post are solely the responsibility of the author alone and do not represent the views of the Bioethics Program or Union Graduate College.]

New Tools for HIV Prevention: Why I am a Truvada Whore

by Sean Philpott-Jones, Director of the Center for Bioethics and Clinical Leadership

Although the epidemic likely started a decade or two earlier, AIDS wasn’t identified as a new disease until 1981. It took a few more years to isolate HIV, the virus that causes AIDS, and to develop reliable tests for diagnosing infection.

In the thirty years since, nearly 30 million people have died and another 35 million are currently infected with HIV worldwide. In the US, over a million people are living with HIV/AIDS. Although the disease still primarily affects gay men in the US, heterosexual men and women — particularly men and women of color — are also at risk. Globally, heterosexual men and women of color bear the largest burden of the disease.

Transmission of HIV is actually very easy to prevent. The virus is spread through bodily fluids, usually through sex but also through the sharing of needles, the use of improperly sterilized medical equipment, or via exposure to contaminated blood products. For most us, practicing safer sex – such as abstinence, monogamy or the use of latex or polyurethane condoms – makes the risk of acquiring HIV very small. Despite this, rates of HIV infection are still too high. Last year, 2.3 million people were newly infected with HIV. 50,000 of these new infections occurred in the US.

One problem is that those most at risk tend to be socially or economically marginalized. Such marginalization can make current HIV prevention messages and tools – abstinence, condoms, and mutual monogamy – inaccessible to many. Thus, there is an urgent need to develop new user-controlled HIV prevention tools, such as vaccines and pre-exposure prophylaxis, that will enable these individuals to protect themselves.

Pre-exposure prophylaxis (PrEP) involves the use of current drugs to prevent rather than treat HIV. Recently, several large-scale clinical trials found that daily use of the antiretroviral drug Truvada® – popping this pill every morning like you would a multivitamin – reduced the risk of acquiring HIV by nearly two-thirds. The US Food and Drug Administration (FDA) has since approved the marketing ofdaily Truvada for HIV prevention, and Medicaid and other health insurance plans now cover the cost of PrEP for patients at high risk for HIV.

Despite clear evidence that this approach works, however, the use of antiretroviral drugs for HIV prevention has sharply divided the AIDS community. Many activists and advocates have voiced concerns that the use of Truvada for PrEP will lead many people to abandon other methods of protecting themselves, particularly the use of condoms.

Michael Weinstein, president of the AIDS Healthcare Foundation, the largest provider of HIV care and treatment in the US, has described Truvada as “a party drug”. Widespread use of PrEP, Mr. Weinstein believes, will cause the gay community to return to the hedonistic days of the sexual revolution, when promiscuity was rampant and condom-use non-existent. This, he fears, will actually lead to an increase in HIV and other sexually transmitted infections in the homosexual community, not a decrease.

The public relations attack by Mr. Weinstein and his allies has been so viscous that proponents or users of PrEP have been labeled “Truvada whores.” While some of these so-called ‘whores’ view this epithet as a badge of honor, others now hide their support or use of Truvada for HIV prevention out of fear or shame.

But what opponents of PrEP fail to consider is the very point I’ve already made: not everyone at risk for HIV can use condoms or insist on monogamy. For many people, daily use of Truvada may be the only HIV prevention tool that is available to them. Others may make a conscious decision not to use condoms or be sexually abstinent. That is their choice, as unwise as some might consider it to be, but that doesn’t mean that they shouldn’t have access to other prevention tools.

By publicly disparaging the use of PrEP, Mr. Weinstein and others are discouraging those individuals from seeking out and using this effective HIV prevention tool. They are also preventing them from seeking all of the other prevention-related services that accompany it, including routine HIV testing and STI screening and treatment. That is unfortunate, and likely hurts efforts to prevent the spread of HIV/AIDS.

Advocates and activists like Mr. Weinstein are right to voice a concern that use of Truvada alone is not as effective as consistent use of condoms, but they also need to recognize that PrEP is it better than nothing at all when it comes to HIV prevention. This is true not just for the gay community, currently being torn asunder by the acrimonious PrEP debate, but also for injection drug users, women of color, and other high risk groups. More importantly, these adovcates need to acknowledge that use of PrEP with condoms is even more effective at preventing the spread of the virus.

Truvada is a lifesaver, both in terms of preventing the spread of HIV and in prolonging the lives of those living with HIV/AIDS. We should be encouraging its use, not disparaging it. So I’ll say it loud and say it proud: “I’m a Truvada whore!”

[This blog entry was originally presented as an oral commentary on Northeast Public Radio on April 10, 2014. It is also available on the WAMC website. Its contents are solely the responsibility of the author alone and do not represent the views of the Bioethics Program or Union Graduate College.]

Forgiving Fred Phelps

by Sean Philpott, Director of the Center for Bioethics and Clinical Leadership

Fred Phelps, one of the most reviled men in the United States, died last week. Mr. Phelps was the founder of the Westboro Baptist Church, a virulently homophobic organization known for its “God Hates Fags” slogan.

Members of the Westboro Baptist Church have been conducting anti-gay protests since 1991, but the group gained national prominence in 1998 when it picketed the funeral of Matthew Shepard. As most people know, Mr. Shepard was a young man from Wyoming who was robbed and beaten to death by two men who targeted him because he was gay. His murder and the subsequent trial of his assailants, dramatized in the award-winning play The Laramie Project, helped to raise public consciousness about anti-gay bullying and hate crimes against sexual minorities.

The Westboro Baptist Church now conducts an average of six or more protests a day. Church members routinely picket the funerals of other gay men, particularly those who were the victims of hate crimes or who died of HIV/AIDS. They also protest at performances of The Laramie Project, at concerts given by musicians deemed to be LGBT-friendly, at Jewish and Muslim religious services, and even at the funerals of soldiers killed in Iraq or Afghanistan. Those wars, Church members believe, are divine punishment for “[our] evil nation for abandoning all moral imperatives that are worth a dime.”

Despite the fact that Mr. Phelps and his followers believe that my husband and I are directly responsible for all of the ill fortune that befalls Americans, I do not celebrate his death. While I am not going to mourn the passing of a hate-filled man such as Fred Phelps, I’m not going to take perverse happiness in it either. In fact, I find it sad that he left this world without a chance to find peace, love, redemption and forgiveness.

Many of my friends and family find this a bit shocking. When I posted this sentiment on Facebook, for example, one colleague commented that she’d have a hard time finding forgiveness for a guy who, by picketing the funerals of combat soldiers, put grieving families through so much additional pain.

I see it quite differently. People like Fred Phelps are exactly the ones that need our forgiveness. Moreover, forgiving those who have hurt us — particularly those who have done nothing to deserve forgiveness — gives us great power and strength. This is a lesson that I learned several years ago after having lunch with a remarkable woman named Eva Mozes Kor.

Ms. Kor is a Holocaust survivor. At the age of 6, Romania-born Eva and the other members of her family were sent to the infamous Auschwitz concentration camp. While there, Eva and her twin sister Miriam were the subjects of horrific medical experiments by Dr. Josef Mengele. Despite this, they both survived and were liberated by Allied forces near the end of the war. Eva eventually emigrated to the US while her sister moved to Israel. Together, they founded an organization called CANDLES (Children of Auschwitz Nazi Deadly Lab Experiments Survivors), through which they began to locate other survivors of Dr. Mengele’s research and to publicize the experiences of Holocaust survivors.

But Ms. Kor also did something completely unexpected and extremely controversial. Fifty years after the liberation of Auschwitz, on the very site where so many died, Eva announced publicly that she forgave the Nazi’s for what they had done to her. She didn’t deny that inhumane atrocities had occurred in the camps, nor did she believe that these crimes should be forgotten. She simply forgave those that had wronged her, freeing herself from decades of victimhood and suffering.

Hearing this story from Ms. Kor inspired me to do the same in my life. I forgave a former employer for a myriad of wrongs, letting go of my anger while still embracing the management lessons that I learned. I even forgave my former stepfather for a decade of mental and physical abuse, recognizing that my own compassion is a direct response to his lack of caring and concern.

I believe that Fred Phelps deserves the same. In fact, we should even thank Mr. Phelps and his followers for their hate-filled rhetoric. By taking the same rhetoric and opinions spouted by many ‘good Christians’ to the extreme — through slogans like “God Hates Fags” and “Thank God for Dead Soldiers” — the Westboro Baptist Church showed just how pervasive and perverse homophobic attitudes are. It’s even possible that many of the recent advances in gay rights wouldn’t have been achieved without Fred.

Thank you, Mr. Phelps, for being a role model for kind and caring people around the world. You and the others like you teach us what we should strive not to be. I only hope that you find the love and compassion in the next life that you so sorely lacked in this one.

[This blog entry was originally presented as an oral commentary on Northeast Public Radio on March 27, 2014. It is also available on the WAMC website. Its contents are solely the responsibility of the author alone and do not represent the views of the Bioethics Program or Union Graduate College.]

I Heard It Through the Grapevine: Ethical and Legal Considerations of HIV Disclosure

by Jacob Dahlke, Bioethics Program Alum (MSBioethics 2012)

Nebraska’s highest court ruled last week that an Omaha-area woman can pursue her lawsuit against a local clinic that she alleges disclosed her HIV-positive diagnosis. The case began in 2010, with the plaintiff, known only as C.E., visiting a diagnostic lab in Omaha as a part of a health insurance application. After sending the results to another lab, C.E.’s lab results arrived to her local physician’s clinic, Prairie Fields in Fremont, 30 miles NW of Omaha. C.E. was told at her consultation in the fall of 2010 of her positive diagnosis for HIV. She had initially asked for her results from an employee and former high school classmate Kristy Stout-Kreikemeyer, who appeared to see the results but deferred the actual disclosure to C.E. to a staff physician assistant. C.E. was told the test was inconclusive, and she agreed to take another test. Barely more than 24 hours later C.E. was contacted by an ex-boyfriend, Jonathan Karr, to ask about how she was, having heard from another mutual acquaintance, Jamie Goertz, that she had “full blown AIDS”. It is alleged by C.E. that Kristy Stout-Kreikemeyer told Jamie Goertz about the diagnosis, and that Prairie Fields is also responsible for this violation of her privacy.

While the details of the case may seem to read like a sort of tabloid story, the ethical issues remain real. What are the public health implications of disclosing vs. keeping private STI diagnoses, including HIV? What are medical facilities’ obligations regarding such disclosures? Does the public have a right to know such private details about individuals? How does the size or intimacy of the community change the issue, or should that be irrelevant?

Let’s begin with some lingering unknown factors. First, it remains unknown C.E.’s actual HIV status, and I would anticipate it will remain unknown to the general public, even through the course of her future trial. While her initial screen was positive, it was recommended by the clinic that she have another, more definitive test performed in order to rule out false-positive screen. According to the CDC, “(f)urther testing is always required to confirm a reactive (preliminary positive) screening test result.” While the court paper refers to only an initial ‘blood test’, it would remain possible that the test would provide a false-positive result, meaning that the test indicated the presence of HIV antibodies when there were none. This would have been why the PA at Prairie Fields wanted C.E. to return for a follow up, more definitive test.

What does this have to do with privacy and public safety? The first is that C.E. was not diagnosed with having HIV; she only screened positive for it. Not until C.E. undergoes (underwent) the second test and is positive there, would she be considered HIV-positive. This may matter for C.E. from a legal standpoint because her lawsuit may include some claims to libel, in which the defendants publicly slandered her, saying she has a disease that she doesn’t. From a public perspective, the only reporting that is to be done is to the appropriate health departments. This was appropriately not yet done by the clinic, since a confirmed positive diagnosis was not present. The purpose in reporting to health departments is tri-fold: 1) it can aid the patients who may need treatment by connecting them to local resources and by providing local context to their disease; 2) it helps to identify and support sex partners who may not yet be infected, or partners who are at risk of infection, or partners who may be infected but who do not yet know; and 3) it can help to track disease patterns and trends, thus ensuring that appropriate resources are being devoted. It is done confidentially to ensure that a patient maintains control (autonomy) over their own healthcare decisions, including the circumstances (who, what, when, where, why, how) of telling others.

It is perhaps obvious to say that a case like this can lead to a loss of trust between patient and physician in a community. Confidentiality is a benchmark of quality healthcare. Patients are ill, concerned, and otherwise vulnerable; healthcare providers are there to have intimate and personal conversations with patients that are often not discussed with even the most privileged of the patients’ inner circle of friends and family. In the event that C.E. had a negative confirmatory test for HIV, it should have been up to her to share her ‘close call’ with whomever, including no one. Likewise, were she to test positive, the ability to at least control the context of her telling her sexual partners ought to have been hers. But that did not happen, due to someone’s (alleged) violation of her privacy.

Instead, what transpired highlights why confidentiality in healthcare is so important. C.E. was instead left to defend herself against her community, which appears to quite closely knit and connected to each other for long periods of time. What should have been a conversation between C.E. and her physician was instead being talked about at a local bar, which led eventually to her ex-boyfriend (and father to one of C.E.’s children) asking her about it. Breach of confidentiality is obviously not a problem that exists only in rural or small communities, but in this case it sure seems like it was exacerbated by it.

[This blog entry was originally posted on Mr. Dahlke’s blog on March 18, 2014. Its contents are solely the responsibility of the author alone and do not represent the views of the Bioethics Program or Union Graduate College.]