For those of us living with HIV-infection the stigma associated with the condition is always evident. Always! It is visible on dating Apps with profiles using the word "clean" to describe serostatus; it is visible on certain pharmaceutical commercials with disclaimers that the medication doesn't protect against HIV (Viagra1, NuvaRing2); it is visible in the criminal justice system with archaic HIV Criminalization laws. But most troubling sometimes is when state and local health departments contribute to fueling HIV stigma with their reporting and health counseling policies. North Carolina (my home) is no exception.
First of all, let me begin by saying that I nothing but the utmost respect for the dedicated people who work in state and local health departments, including the North Carolina Department of Health & Human Services ("NCDHHS"). They often work tirelessly to promote public health, as well as ensure the delivery of the much-needed public health safety net programs designed to help people most in need. But that doesn't mean I cannot call a spade a spade when their reporting and health counseling "policies" do more harm than good.
Take for example what happened to me this week. The following summary captures how state and local public health "policies" can most certainly fuel HIV stigma:
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Every six months my Infectious Disease doctor (who is based in Washington, DC) shares my medical records and blood work with my Primary Care doctor in North Carolina. As such, it triggers contact by a public health counselor working at NCDHHS to discuss my health status. My health care is paid for by private insurance funded for by my employer, and not a state-funded program such as Ryan White or Medicaid, mind you. It seems to me that such "follow-up" activity funded by already limited public health budgets would be better directed at the underserved communities who we all acknowledge fall through the cracks of our public health system, such as formerly incarcerated inmates living with HIV/AIDS or transgender men and women living with HIV/AIDS. That's another argument for another time.
The NCDHHS public health counselor, who we will call "John Doe" as not to embarrass him, left me a voice message at 3:48 PM on Monday (04/29) saying,"I have an important health matter to discuss with you." Knowing what it was about, I went about my day and I didn't rush to return the call. Less than an hour later (52 minutes, to be exact), John Doe shows up unannounced at my apartment building (which has restricted fob access for the elevators). I wasn't home, so he entered the leasing office for assistance. According to the wonderful ladies working in the leasing office, John Doe proceeds to insist that they let him upstairs to my apartment after identifying himself as working with NCDHHS. They kindly declined, and text me to ask if I was expecting anyone from the state (...thinking maybe it was a social worker doing an adoption home visit follow-up). Upon replying to the leasing office that it was not any such adoption home study follow-up visit, they once again declined to grant access to the resident floors. Then, John Doe proceeds to leave with them a sealed envelope addressed to me (letter, as seen herein).
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An unscheduled visit to my home, such as the one conducted by John Doe, is the sort of thing that fuels HIV stigma because it leads to whisper campaigns. Make no mistake, it was a compete invasion of my privacy under the guise of promoting public health. That is bullshit (excuse my language)! Fortunately, I'm very open about my HIV status with family, friends, colleagues, and strangers so John Doe's uninvited and unscheduled visit to my home had no negative repercussion. His visit, nonetheless, did lead to lots of questions and concerns by the apartment building's staff (...again, thinking it was adoption-related). Enter how rumors are spread, which can include HIV-related stigma.
Many people living with HIV-infection might not be able to say the same thing. In fact, I know for certain that MANY of my fellow brothers and sisters would have been in a very precarious situation if the local health department had invaded the privacy of their homes. Such moves should raise cautionary alarms not only for those of us living with HIV, but anyone fighting to end the epidemic.
The saga, unfortunately, didn't end there because John Doe would once again call me on Wednesday (05/01). Upon missing his call, I did return his call to address what had transpired earlier in the week. John Doe identified himself and then asked me to confirm certain identifiable information, such as my date-of-birth. Before starting his spiel, I told him that his health counseling was appreciated but not necessary and also thanked him for his time. But John Doe insisted on reading his spiel to me. Then, he asked me, "Are you planning to continue your care with the Infectious Disease doctor in Washington, DC?" My response probably wasn't expected by him. I simply said, "John Doe, with all due respect, I don't think that is any of your business nor is it the business of the State of North Carolina where I go for my health care." John Doe then had the audacity to call me "rude" and also remind me that I was living with a "communicable disease" - as if I had somehow forgotten about the HIV diagnosis given to me some 18 years ago. No shit, Sherlock (again, excuse my language)!
If rubbing my face in my HIV status doesn't fuel HIV stigma, then I'm not sure what does. Needless to say our conversation went downhill from there, and it ended with my hanging up on him.
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Don't get me wrong, I fully support policies aimed at linking patients to timely, appropriate care and treatment for any condition (including HIV). But the way some health departments, in general, and this public health counselor, in particular, handle their federal- or state-mandated responsibilities leaves a lot to be desired. I can only imagine how what happened to me would have played out with some of my brothers and sisters in marginalized communities. The fact is it DOES happen every single day across this country, especially in rural communities.
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| Photo Source: wehoville.com |
Marcus J. Hopkins, who is also a long-term survivor and a respected public health policy consultant residing in rural West Virginia, agrees. Hopkins said, “In many Southern states and rural areas of the country, Ryan White providers, caseworkers, and staff are already trained to keep the identities of the AIDS Drug Assistance Program recipients hidden, going so far as to arrange off-site meeting places, mailing documents in nondescript envelopes, and going above and beyond to allow people living with HIV to maintain their privacy. State health departments, however, seem not to be as discerning or well-trained, with their focus being trained on preventing infections from spreading. These types of interventions, however, must be handled not with a crowbar, prying off the doors, but with a delicacy the employees often disregard.”
According to Eddie Hamilton, executive director of the ADAP Educational Initiative based in Columbus, Ohio, there is a rush to gather surveillance data and to get newly diagnosed individuals into care, along with genome exploration that expands the ability for public health officials to detect HIV outbreaks, all of the involved parties seem to forget the primary person’s privacy in all of the hoopla...THE PATIENT! Hamilton should know, because as an long-term survivor he has made a name for himself holding Ohio and healthcare providers accountable through successful litigation.
Hamilton's assessment of the HIV stigma implications go even further.
Under the new Federal “End to the Epidemic” initiative, State Health Departments nationwide are now willing to conduct involuntary unconstitutional DNA searches without informed consent or with a demonstration of appropriate safeguards that trample on constitutionally guaranteed privacy and due process rights. Patient’s CD4 counts are already being transmitted to the State Health Department by labs and many of them have no clue that this data has been transmitted by the lab outside of their health care provider/patient relationship. These data exchanges occur on all patients statewide (in many states) no matter who pays for their care (even private pay). Now, they want to expand those transmissions to include DNA sequencing.
"Until the HIV criminalization laws are rolled back, we cannot allow Health Departments to beat us further over the head with this granular data collection that could later be used against us in the future," argued Hamilton. "State Health Departments have devolved into data driven facilities as their grant dollars depend upon the data at the expense of a person’s privacy and the absolute right to know who has access to their personal health information data and how that data is used. It is incumbent upon Health Departments to design and implement the data collection process correctly with full articulation, transparency, data privacy safeguards and within the bounds of the law."
He further contends, new surveillance techniques such as molecular surveillance (i.e. Nucleoside Peptide Sequencing) and any other granular surveillances without informed consent will not withstand guaranteed State and Federal constitutional challenges as they are generally considered impermissible searches without a warrant (a requirement of the Fourth Amendment of the U.S. Constitution) unless a public health emergency has been declared. Many of the newer protocols also do not consider existing HIV Criminalization laws and how this granular information could be used in the prosecution of individuals.
With the recent privacy breaches of personal identifiable information in California, New Jersey and Ohio impacting people living with HIV/AIDS - including ADAP clients in these states - concerns over HIV stigma can never be overlooked or brushed aside. Though in my recent situation, John Doe didn't violate my confidentiality he most certainly creep his way into my privacy by showing up at my home...unannounced! Leaving a letter with leasing staff certainly could have further violated my privacy if someone other than me had opened it. And again, reminding me that I'm living with a communicable disease was a low blow especially coming from someone who purports to be a "counselor" by profession.
Interestingly enough, Ohio's Supreme Court seems to agree with the concerns expressed by myself, Mr. Hopkins, Mr. Hamilton, as well as countless people living with HIV/AIDS. The Ohio Supreme Court made it clear that purposes of the breach of medical confidentiality tort, the focus is on the patient's wishes, as "it is for the patient - not some medical practitioner, lawyer, or court - to determine what the patient's interests are with regard to personal, confidential medical information."3
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[1] McCann Erickson Ad Agency (2014). Viagra TV Commercial, 'Cuddle Up'. Retrieved online at https://www.ispot.tv/ad/7Ebe/viagra-cuddle-up.
[2] Ingenuity Studios. (2016). Monday Tuesday Wednesday. Retrieved online at https://vimeo.com/162745160.
[3] Biddle v. Warren Gen. Hosp., 86 Ohio St.3d 395, 1999-Ohio-115. Retrieved online at http://www.supremecourt.ohio.gov/rod/docs/pdf/0/1999/1999-Ohio-115.pdf.
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