HIV Training in General Medicine

By: Marcus J. Hopkins, Policy Consultant

HIV in the United States is an issue that isn’t going away, anytime soon, despite the fact that the incidence of new infections has continued to decline annually since 2012 (Centers for Disease Control and Prevention, 2018). Other bright spots exist on the HIV front, as well:

• The majority of HIV treatments released since 2010 have been easy-to-tolerate, single-pill regimens, cutting down on the number of medications patients have to take to achieve and sustain viral suppression;

• Patients no longer have to wait until they are diagnosed as “AIDS” in order to begin treatment (as was the case when I was first diagnosed), initiating treatment immediately upon receiving an HIV diagnosis;

• Fourth- and Fifth-Generation HIV combination testing assays have reduced significantly the time between initial infection and the time when HIV can be detected down to 1 month or 14 days (respectively);

• The reality that treatment will soon be available in once-monthly long-term injectable form; and

• Data indicating that people with undetectable HIV viral loads cannot transmit the disease to others.

These bright spots all point to one thing: the time has come to begin taking HIV out of the realm of specialized medicine, and into the general practice.

When HIV first hit the medical scene in the early-1980s, circumstances required that the disease become the provenance of Infectious Disease (ID) specialists.  As times have progress, however, HIV has become increasingly easier to diagnose, treat, and manage, so much so that conversations need to be had about beginning to shift at least some aspects of treatment off of ID docs, and over to General Practitioners (GPs).

This is particularly true when it comes to prevention – a task which was supposedto be falling to GPs in the form of biannual HIV, STD, and STI testing, but which GPs have been notoriously lax in doing (a topic for another blog, really). That said, we have at our fingertips one of the most effective methods of preventing HIV transmission in the history of the disease: Pre-Exposure Prophylaxis (PrEP).

Photo Source: POZ

PrEP, for the uninitiated, is the medical repurposing of HIV drugs – Truvada (emtricitabine and tenofovir disoproxil fumarate) and, soon, Descovy (emtricitabine and tenofovir alafenamide fumarate) – that, when taken properly, can prevent the spread of HIV via sexual contact by more than 90% and by more than 70% among People Who Inject Drugs (PWIDs). This is an amazingtool that can be used to essentially eliminate the risk of HIV transmission in the U.S. and, potentially, around the world.

The problem? Nobody’s using it.

In 2017, there were a total of 100,282 PrEP users in the United States (AIDSVu, 2019). There were roughly 1,008,929 people living in the United States who are diagnosed with HIV in 2016 (CDC), and the total U.S. population is 327,200,000. If we subtract that 1,008,929, we’re left with approximately 326,191,071 people in the nation who are notinfected with HIV. That means that 0.03% of the non-HIV-infected U.S. population was prescribed PrEP.  Granted, not every single one of those 326,191,071 people face a high risk of HIV infection, particularly if take into account the number of children. That said, the number of PrEP users is astonishingly low.

Among the various barriers to receiving PrEP – financial barriers, social stigma-related barriers, geographic barriers – perhaps the biggest hurdle faced by patients who would like to take advantage of this groundbreaking prevention method is that few medical providers know anything or enough about the drug, its utilization, and HIV to be comfortable prescribing the regimen. This is troubling, because PrEP – the medication – can be prescribed by literallyany prescribing physician (although payor approval may require consultation with or prescribing by a ID specialist).

A recent study published in the Journal of General Internal Medicine found that even though 96% of 229 internal medicine residents surveyed had heard of PrEP, more than half rated their knowledge of the medication and its side effects as only fair or poor (Terndrup, et al., 2019). The authors write, “Residents who rated their knowledge more highly reported a greater likelihood of prescribing PrEP in the future.”

Photo Source: Business Insider

Essentially, the more physicians know about PrEP, the likelier they are to prescribe the regimen – a drum that PrEP advocates and activists have been beating since the regimen first became available in 2012. Seven years after it was first made available for prevention purposes, and only 0.03% of the non-HIV-infected U.S. population is utilizing this tool? That’s simply unacceptable.

With all of these advances in HIV prevention tools and treatment, for proactive patients (like myself), HIV has largely become a “maintenance” disease. I take my meds every night, at Midnight, I see my ID specialist twice a year, and the majority of our conversations are collegial in nature about my work in viral hepatitis. I have my blood drawn, I see my Ryan White caseworker, and I have my prescriptions renewed. I am a low-maintenance patient.

For me, and patients like me, my HIV maintenance is something that could essentially be shifted off onto a GP, allowing my ID specialist to focus his time and efforts onto patients with greater needs and/or challenges. This additional focus could potentially allow those higher-maintenance patients to become better stewards of their own health, eventually allowing them to ideally move their treatment over to a GP, as well. In this ideal scenario, where GPs are better educated, trained, and knowledgeable about HIV and its various treatment regimens, this could potentially open up dozens of new provider options, reducing the need to travel to ID specialists, and instead receive treatment from someone more local.

For patients who are not living with HIV, increased GP training, education, and knowledge about HIV and its prevention via PrEP has the potential to exponentially increase utilization of PrEP and decrease new HIV infections, even among PWIDs – a growing concern in areas of the country hardest hit by the opioid epidemic (i.e. – rural and suburban areas of the country). In areas where ID specialists are rare, the option of being prescribed a preventative medicine to prevent HIV infection by a local GP would be a godsend.

Terndrup’s study indicates that residents are more likely to prescribe if they have more knowledge. This is something that can and should be easily provided to them, and it is incumbent upon those in charge of these residency programs to begin instituting HIV training within their programs.

References:

• AIDSVu. (2019). 2017 PrEP Data – AIDSVu. Atlanta, GA: Emory University: Rollins School of Public Health: AIDSVu: Tools & Resources. Retrieved from: https://aidsvu.org/wp-content/uploads/2019/01/AIDSVu_State_PrEP_2017_2.xlsx
• Centers for Disease Control and Prevention. (2018, November). HIV Surveillance Report, Vol. 29. Atlanta, GA: United States Department of Health and Human Services: Centers for Disease Control and Prevention: National Center for HIV/AIDS, Viral Hepatitis, STD, and TB Prevention: Division of HIV/AIDS Prevention. Retrieved from: https://www.cdc.gov/hiv/pdf/library/reports/surveillance/cdc-hiv-surveillance-report-2017-vol-29.pdf
• Terndrup, C., Streed, Jr., C.G., Tiberio, P., Black, M., Davis, J., Apfel, A., Blackstock, O.J., Edelman, E.J., & Berkenblit, G. (2019, April 24). A Cross-sectional Survey of Internal Medicine Resident Knowledge, Attitudes, Behaviors, and Experiences Regarding Pre-Exposure Prophylaxis for HIV Infection. Journal of General Internal Medicine. DOI: https://doi.org/10.1007/s11606-019-04947-2

Disclaimer: Guest blogs do not necessarily reflect the views of the ADAP Advocacy Association, but rather they provide a neutral platform whereby the author serves to promote open, honest discussion about public health-related issues and updates.

An Inherent Value in Advocacy Partnerships...AGAIN! CMS Backs Down on Medicare Part D's Six Protected Drug Classes

By: Brandon M. Macsata, CEO, ADAP Advocacy Association

In a blog posted last summer we highlighted why advocacy partnerships are so important to the HIV/AIDS community, and how these partnerships advance public policies designed with patients' interests in mind. Last week, we were reminded...AGAIN...why there is an inherent value in advocacy partnerships. The Centers for Medicare & Medicaid Services ("CMS") released its Final Rule on Medicare Part D, which did not include potential harmful changes to its six protected drug classes ("6PC").

Photo Source: indystar.com

The 6PC "protects vulnerable seniors and low-income beneficiaries with serious and complex health conditions, while also allowing Part D insurance plans to use the tools they need to control costs. Medicines for some of the sickest patients in Part D are covered within the six protected classes, including those for cancer, epilepsy, HIV/AIDS and mental illness. Many of these conditions require patients to attempt a variety of therapies before they and their doctor settle on the most appropriate treatment, so there is no one-size fits all medicine for these conditions."[1]

The current Administration had proposed to weaken these drug class protections, but their attempt was met with fierce opposition from the pharmaceutical industry, patient advocacy groups, and numerous powerful trade associations. Fortunately, in the end, CMS decided to walk back from their short-sighted proposal.[2]

The ADAP Advocacy Association discussed the issue at its recent HIV/AIDS Fireside Chat retreat in California, we all as endorsed numerous national sign-on letters and continually Tweeted to @CMSGov about the potential harm to people living with HIV/AIDS.

Reaction to the news was universally positive!

"The epilepsy community spoke up loudly against this proposal and we are grateful that the Administration heard us," said Philip M. Gattone, M.Ed., president and CEO of the Epilepsy Foundation. "For people living with epilepsy, there is no 'one-size-fits-all' anticonvulsant, and treatment is highly individualized. People with epilepsy need access to the full range of anticonvulsants so that they — along with their healthcare provider — can identify and remain on the medication(s) that helps them achieve seizure control. Preserving this important policy will enable that to happen."[3]

Altha Stewart, M.D., President of the American Psychiatric Association, said, "With adherence to medications already a challenge, this proposal would have added additional utilization management burden which contributes to burnout for clinicians, as well as confusion for patients trying to navigate an already complex system. This rule protects patients by ensuring they receive lifesaving medications through the protected classes."[4]

“Medicare beneficiaries with the most complex, chronic conditions are breathing a sigh of relief,” said Chuck Ingoglia, executive director of the Partnership for Part D Access, a coalition of drug makers and patient advocacy organizations that also opposed the proposal. “This rule cements Medicare’s protected classes policy as an essential patient safeguard in Medicare’s prescription drug program.”[5]

In 2014, like this year, advocacy partnerships also squashed attempts by the previous Administration to weaken Medicare Part D's 6PC. It demonstrates that stakeholders can from time to time, unite behind common goals. In the case of the 6PC proposals in 2014 and 2019 it was patient protections that won the day.

CMS's Final Rule also prohibits the use of step therapy for patients who are stable on their current treatment.[6] Yet another win for patients, which was achieved by different stakeholder groups uniting against the dangers of step therapy.

Advocacy partnerships prove that stakeholders don't have to agree on everything, yet can come together to advance (or protect) common interests. What happened last week with the CMS announcement shows that people living with HIV/AIDS are well-served by such collaboration. Chalk one up for us, finally!


__________
[1] Johnson, Juliet (2019, January 31). New Research Shows Changes to the Six Protected Classes Would Harm Most Vulnerable Patients and Are Unnecessary. ADAP Blog. Retrieved online at https://adapadvocacyassociation.blogspot.com/2019/01/new-research-shows-changes-to-six.html.
[2] Owermohle, Sarah, and Sarah Karlin-Smith. (2019, May 17). Patient groups, pharma cheer CMS retreat on protected class change. POLITICO. Retrieved online at https://www.politico.com/newsletters/prescription-pulse/2019/05/17/patient-groups-pharma-cheer-cms-retreat-on-protected-class-change-437838.
[3] Epilepsy Foundation. (2019, May 17). Epilepsy Advocates and Partners Successfully Preserve Medicare's Six Protected Classes Policy. Business Insider. Retrieved online at https://markets.businessinsider.com/news/stocks/epilepsy-advocates-and-partners-successfully-preserve-medicare-s-six-protected-classes-policy-1028210785.
[4] American Psychiatric Association. (2019, May 17). APA Commends CMS for Maintaining Medicare's Six Protected Classes Policy. Retrieved online at https://www.psychiatry.org/newsroom/news-releases/apa-commends-cms-for-maintaining-medicare-s-six-protected-classes-policy.
[5] Florko, Nicholas. (2019, May 16). Trump administration backs off a proposal to let Medicare plans exclude certain drugs. STAT. Retrieved online at https://www.statnews.com/2019/05/16/trump-backs-off-protected-classes/.
[6] Biotechnology Innovation Organization. (2019, May 20). Final Medicare Rule Improves Patient Rx Access, But Challenges Remain.

Reflections from an HIV Advocate's Journey: Tori Cooper

By: Tori Cooper, Founder and Executive Director of Advocates for Better Care Atlanta, LLC

What can I say? I can’t even remember the first time I heard of HIV/AIDS. But I can tell you when it first hit close to home. The way I remember, my mom’s cousin and father died on the same day; one in the morning and one that evening. That’s terribly traumatic. My grandfather died from hard living. He was an absolutely beautiful man with a gentle spirit and a body that couldn’t withstand years of unhealthy living. My mom’s cousin was different. He had lived what seemed like an amazing life in the Big Apple, with fur coats and beautiful cars and glorious apartments in the city. Yet on this very same day, both of their lives ended within hours of each other. Neither of their bodies could any longer handle the pain and decay that had ravaged both of their brilliant light. My grandfather died of organ failure and her cousin died of complications due to AIDS.

I was in middle school and had recently lost my virginity. I remember so vividly because my first time (this time really counted) was on a Saturday while Soul Train was on. My mom dropped me off at my boyfriend’s house (she didn’t know he was my BF) as she visited my grandfather in the VA hospital. Around this same time, my family had traveled from VA to NYC to visit her cousin. She described having to wear all kinds of equipment, that I imagined was like a space suit, just to enter his room. No one could actually touch him, but at least they were able to be kind of close to him and share this space – even if it was through hazmat gear. They way I remember, it was sad, but in my middle school aged mind, it seemed kind of cool too. Soon after these two events, two men whom my mom loved so much lost their lives. Another thing that’s so interesting is how I can remember that the one who drank and smoked himself to death, was honored in a military funeral where the entire family grieved and carpooled to Arlington National Cemetery for a full military home going. The other, who lived a rather fanciful, pristine and glorious life, died among innuendo, whispers and rumors. This was my introduction to HIV.

A few years later, I began to socialize with my new friends. This was all part of my “coming out” phase and I gained so much street smarts. The girls used to tell me, “You won’t get AIDS if you don’t mess around with white men.” And I believed them. That was my HIV/AIDS education. I remember seeing Black folks, who now would be called Trans and Queer, looking great on one Friday and looking like death by the following Friday. I remember when the same folks that we partied with just disappeared.  Eventually, word would get out that they died and that would be the end of it. At some point during the next few years, there were fundraisers at the clubs and folks selling dinner plates to make enough money to cremate our own. This was all part of my coming out years. It was just how life was at the time.

Fast forward, high school came and went. I got to college and discovered so many wonderful things, and sexually, I just flourished! I had my first real love and my first real heartbreak. By 1988, we all knew about HIV. I had actually been tested and received a false positive. This was at a time when it took weeks to get your results. For a short period of time, I figured my life would be over just like those same folks I partied with as an underage teenager in the clubs. For a short while, I didn’t think I had a future. I just imagined that no one would ever remember that I even lived on this earth. And then when I learned that first test was wrong, I was stunned once again. And then came 1989…

By the summer of 1989, I had already visited Atlanta, partied in New York and clubbed in DC. I had joined the military and was attending an affirming HBCU (Historically Black College/University) which made me even prouder to be Black and unique. 1989 proved to be a turning point in the way I saw the world and other people and especially in how I see myself. I learned some truths about myself and found out some inescapable truths that affect every aspect of my life even now. And by 1989, it was obvious what HIV was doing to folks who were just like me. These were folks I had partied with, fought with, made love with and socialized with since I was sneaking out of my parents’ house at 11 and 12 years old. Within the next few years, this plague would ravage Black clubs and queer Black communities. Folks that I consider friends JUST DIED. There wasn’t anything special about it after a while. They JUST DIED. Some had horrific deaths with hospital stays, and skin lesions and were just skin and bones. Others looked kinda sick but seemed to have dodged the bullet, but then suddenly the news was circulating through the community that we had lost another one. But somehow, in spite of 1989, I was still here. Not only was I here, but I was living my best life. But how and why???

Throughout the early 1990s, you could visibly see the plague taking over our communities. My socialization was in the clubs. I partied up and down the east coast – Club Bunz, Hypodrome, Paradox, The Tunnel, Webster Hall, Traxx DC and Tracks Atlanta, Loretta’s, The Tunnel, Scorpios, Equelitas, Octagon, Scandals, the Pyramid, Club Colours, Paradise Garage, Onyx and so many others. I screwed my way from city to city and had fun the whole time. I figured if this inevitable plague was gonna kill me too, I was gonna go out kicking and doing splits. I observed that the HIV epidemic took away all the sissies and punks from Black clubs. Those were my friends. They were the ones who always got the party started. Unfortunately, those were also the ones society falsely blamed for being HIV to Black communities. Well, they said it was punks and downlow men. Punks and sissies took the heat for the Black community. I’m not sure I was ever a sissy. But sissies and punks were my friends. I never thought of myself as a sissy or a punk. I just wanted to be a woman.  House music and Disco suddenly became associated with gayness and just like us, it died out. Men weren’t dancing with men in gay clubs anymore. Isn’t that crazy? The same men had been sissies suddenly were wearing Timberlands and sweatpants. Nobody wanted to be a sissy anymore. In Black communities and Black clubs, that meant you were a part of the problem. HIV was killing us and HIV stigma was killing those of us who didn’t die. I didn’t die even though I was expecting it. But it never happened. I’m still here. And so many others, who probably deserved to be here, didn’t make it. There must be a reason, and it would take me another twenty years to figure it out.

So fast forward, I’m living my life. My ex and I decided I was going to relocate back to Atlanta and we would live happily ever after. When that didn’t happen and we broke up, I was suddenly all alone and still alive. Hmmm aint that something? In Atlanta I saw that folks who were just like me were being victimized on public transportation just for being themselves. I saw that Black trans women were still dying because they weren’t engaged in healthcare like I was. I witnessed Black Trans women being denied jobs, even at places where I worked, because they didn’t look or sound a certain way. Being single, I saw that these men didn’t give a shit about us. It’s like people viewed us Trans women as disease ridden, paranoia driven, sexual oddities and not real people. Black Trans women were being killed and nobody cared. I had to do something about it because I was still here.

I swear to you that God revealed to me in a dream that I was supposed to be doing this work. I was in my 40s, single, Black, Trans and still alive, and He or She “called” me to do the work. So, I’m doing it. I’m doing it for all the punks and sissies and queens and queers who are not alive. I’m doing it for all those who died, when I didn’t. I’m doing it for all of US who are in this fight for health and financial equity and fighting systems of oppression. I’m not a martyr for being an HIV advocate. I’m just old enough and optimistic enough to think that I can make a difference in someone’s life. I’ve for the last 30 years when so many people didn’t. I’ve seen what death looks like. So if I can help one person, especially someone like me, to live to see a 30th birthday, and a 40th and 50th birthday, then I feel that I’m doing what I was called to do. I would be doing a disservice to myself and all of the communities that I represent if I didn’t continuously fight for all of us. This is all part of my journey.



Disclaimer: Guest blogs do not necessarily reflect the views of the ADAP Advocacy Association, but rather they provide a neutral platform whereby the author serves to promote open, honest discussion about public health-related issues and updates.

Navigating the Costs of HIV Care – Conversations, Resources & Patient Experience

By: Kathleen Gallagher, Senior Director Health Services Research, Patient Advocate Foundation

Today, many Americans struggle to afford needed medical care alongside their day to day financial obligations due to rising healthcare costs, which suggest a pressing need for timely interventions to assess the level of patient engagement in cost conversations to help mitigate financial stress. This need is even more pronounced among under-resourced individuals who also indicate they are less likely than higher-income individuals to receive the cost information they need. From a consumer perspective, cost information is only meaningful in the presence of other information related to risks and benefits, which allows individuals to make a value-based rather than price-based decision. Unfortunately, very little is known about how and from where individuals prefer to receive cost information relative to healthcare services, as well as how they intend to use the information.

While the impact of medical care costs are important to address, data reflects that patients diagnosed HIV/AIDS are at a higher risk for household material hardships including essential living expenses such as food, housing, utilities and transportation that become even harder to pay when financial resources are diverted toward essential healthcare costs. Therefore, comprehensive cost information must be incorporated meaningfully into care planning, along with information about treatment options and patient priorities, to truly drive value-based personalized decisions. For individuals at risk or diagnosed with HIV, high drug prices and high cost sharing health plans are the most frequently associated drivers of  financial toxicity. Often individuals must choose between their daily medication, putting gas into their car, a hot meal or other financial obligations. As a result, the cumulative effect of financial toxicity has been shown to negatively influence both treatment compliance and quality of life.

To best address the cost concerns of our patients, Patient Advocate Foundation (PAF) conducted two online survey assessments of patients to identify root causes of financial toxicity including preferences towards cost conversations, degree and sources of financial stress.

Across all demographic groups, HIV respondents report that healthcare costs created a financial burden, including:

• Fifty-eight percent indicated experiencing a financial hardship in the previous 12-months due to medical care, with 16% indicating they owed more than $5,000. 
• Oral medication (73%), office visits (40%) and laboratory tests (24%) were the main cost concerns. 
• Insurance related costs (76%) led to the most financial strain. 
• To address financial stress respondent’s:
• Reduced critical expenses (39%)
• Borrowed money from family/friends (34%)
• Paid utility bills late (23%) 
• Were unable to purchase groceries (20%)

Given these data, it is reasonable to assume that costs may impact overall health outcomes and life flow. These harmful tradeoffs are even more pronounced among under-resourced individuals. While costs should be discussed with all people, extra effort must be made for under-resourced individuals as well as for individuals with serious illnesses and conditions requiring high-cost treatments such as HIV.

Healthcare systems should consider ways to routinely initiate cost of care conversations with all individuals, to address patients’ reported desire for conversation and their need for greater healthcare related cost information. Take the following:

• Less than half (48%) of HIV patients had conversations with medical providers about care costs even though almost 80% indicated that these conversations were very important. 
• Respondents utilized their health plan (63%) or advocacy groups (27%) as alternative sources of cost information. 
• Almost 70% indicated that knowing out-of-pocket costs were extremely important when making care decisions and 41% wanted to have these conversations with their medical provider.

Managing the comprehensive costs associate with an HIV diagnosis or preventative medications will require a strategic approach to ensure that these therapies are accessible to the people most likely to benefit from them — a process that should rely on clinician-patient care planning, cost information, and cost conversations.   Individuals want more information on their healthcare costs as these costs often cause undue financial burden and force individuals into harmful tradeoffs. In addition, like any information related to the risks of a treatment, patients want and need to understand how the financial risk associated with their medical care can be avoided, mitigated, and managed. Fortunately, there are publically available resources to help patients with these cost conversations and with mitigating the impacts of financial toxicity.

PAF is a non-profit organization which provides case management services and financial aid to patients across America with chronic, life-threatening, or debilitating illnesses including HIV and access to HIV Prevention (PrEP). If you have questions or concerns around accessing or covering the costs of your medication, you can reach one of our case managers through our HIV, AIDS and Prevention CareLine (link below). Services are free of charge to the patient and can be provided in both English and Spanish.

• https://hivoraids.pafcareline.org/

Our website also hosts several useful tools that can be used by patients seeking information on access to HIV or prevention medication and facilitating cost of care conversations with their medical provider:

• https://www.patientadvocate.org/explore-our-resources/common-barriers-affordability/
• https://www.patientadvocate.org/explore-our-resources/interacting-with-physician/
• https://www.copays.org/diseases/hiv-aids-and-prevention

Disclaimer: Guest blogs do not necessarily reflect the views of the ADAP Advocacy Association, but rather they provide a neutral platform whereby the author serves to promote open, honest discussion about public health-related issues and updates.

When State & Local Public Health "Policies" Fuel HIV Stigma

By: Brandon M. Macsata, CEO, ADAP Advocacy Association

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:

__________

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).

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.

__________

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.

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


__________
[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.