HIV laws, HIPPA and us HIV criminals

[Charles.M]

Being newly diagnosed I am very selective/careful as to who I share my DX with. I recently recieved a letter from my home state from a "Disease Intervention Specialist".
The letter stated that I had 2 days to call them or the would come looking for me at my residence or place of bussiness. I had no idea who this was so i asked google.
As a legal requirement My ID dr is required to report me to the state, after 3 visits she had never mentioned this even though I ask about being on a list etc.

So I called this guy, he put on the caring I hear to help you facade and even gave me some people to call for support groups, which he had to know were dead ends. He asked a lot of questions some I refused to answer, all the while pretending to be my friend so to speak.

Several days later he called again and asked about my wife being tested. She has had 3 tests since my DX all negative. This information was shared with my DX by her at one of my appointments. This guy from the state had that info including my wifes PCP name and had attempted to contact him.

I asked this guy if I am now on a permanent blacklist loacl state or federal? His answer very ambiguos. So basically I have a scarlett letter on my forehead in the state computer system for life?

I am extremely ticked off at my ID dr, I know she has to report the case, but intimate details of my and my wifes life and health should remain private under HIPAA. I believe she crossed the line.

Let me say I would never risk giving this disease to anyone and at my age sex does not drive my life. I understand the need to protect public health, bu I feel like I am being treated almost like a criminal and my rights no longer exist.

I also wonder if the police, emergency medical personell etc are informed of my status automatically if i am pulled over or hurt etc?

Can anyone share thier experience with this?

[Jim Allen]

Hiya,

Sorry to hear that the process was unsettling. It sounds like standard state HIV notification and contact tracing. 

I'm in the EU, so it's slightly different, but here HIV is one of several illnesses that requires notification as it's a public health matter. Privacy including health data is protected here, however, in cases of public health matters it is shared on a limited need-to-know basis.

So it's reported to the state, and with this, there is some basic level of contact tracing done and wellness checks when first in contact with clinics or the Department of public health follow-ups. This is also to monitor/report and allocate public resourcing as needed.

Finally, the data is also shared at an EU level, under the "Dublin Declaration", but that data set is stripped of any personally identifiable information. I assume this is similar in the USA between state & federal governments, but I am sure one of the other members from the US will be able to shed some light on this for you.

http://Https://www.hse.ie/eng/services/list/5/publichealth/publichealthdepts/id/idreporting.html

https://www.ecdc.europa.eu/en/infectious-disease-topics/z-disease-list/hiv-infection-and-aids/prevention-and-control/monitoring-0

[Jim Allen]

I think @Leatherman is the resident expert on this topic.

[leatherman]

ugh. contact tracing is such a good thing and such a horrible thing.

So all STI, including HIV, diagnoses are tracked by states. Patients are also asked about other contacts with whom the patient might have had sexual contact so that those people can be anonymously informed by the state health department that they may have been at risk and should themselves get tested. Right now, in many states, syphilis is quite a problem and contact tracing along with treatment is finally starting to make a dent in the problem.

This data is anonymized and aggregated by the state health dpt to better improve outreach, education, testing, diagnosis, and treatment for these diseases. Ryan White Care Act requires even more data like VL, CD4s, prophylaxes and treatments prescribed, time between medical visits, substance abuse screenings, etc. Each clinic aggregates this anonymized data to improve the clinic's performance (which is based off the patients receiving quality care), while the state uses this data regionally to improve outcomes at a state level.

So that's all the good stuff that happens by collecting data on how to improve the quality of health care and life for people living with HIV. No other illness in America has been treated this way, but scientists, doctors, and a lot of people living with HIV crafted the Ryan White Care Act and it's Quality Management Program into this exceptional approach to health care.

Now the bad stuff. Getting hit on by the state department's STI/HIV intervention outreach program is a toughie - even when you know what contact tracing is and that it'll be coming your way.

First, HIPAA applies as these are State Agents under the head of the State Health Dpt and/or State Chief Medical Officer fulfilling a legal health mandate, that your doctor was also legally obligated to aid (ie the data they collected with your diagnosis). There are several objectives to these agents interviewing PLWH. Make sure the PLWH understands how HIV is transmitted; make sure the PLWH is receiving treatment; make sure the PLWH understands the necessity of daily ARVs; and also to see if there are any more possible contacts to notify about testing.

As you, me, and a lot of people can testify this process leaves a lot to be desired on our end. Rarely do doctors even mention this process. Quite frankly the reasons are varied - it's not their duty to handle, the law requires it, and it happens to everyone. well every one of the patients. rarely does it happen to doctors so I think they don't even realize they should mention it.

Then these agents, with their mountain of paperwork for every case, and often having to spend travel time to track down some PLWH. I think they get used to speaking with most PLWH who have no clue. Some have substance abuse issues that need assistance; some are homeless, or become homeless; a bunch (from our perspective as adults in our 60s) are just kids (20s and 30s) who have issues with access to health care or issues for the first time taking a medication daily.

IMHO just like the police get used to dealing with criminals and end up treating every incident as dealing with a criminal, I think some of these agents just get used to every contact tracing case being a headache. Unfortunately, challenging them or being frustrated with them (I speak from doing the same thing**) only reinforces their opinion that every case/patient is going to be an issue. It's a self-fulfilling cycle for over-worked state officials.

**when I moved back home to SC from OH, my new doctor, of course, reported my case to the state. The agent that supposedly kept wanting to speak with me, also really couldn't make the time. It was very frustrating to me. I knew all about the procedures at this point since I was versed in all thing Ryan White, and I had had my first contact tracing in OH was back in 1992. I was diagnosed at a state clinic and all the contact tracing stuff was done right then when I was given my diagnosis. (ugh. you had to wait 2 weeks to get the results back then). So here I was twenty yrs into treatment (and 2 deceased partners) and this dude was talking about transmission and treatment (like treatment hadn't kept me from dying twice or anything. duh!). Actually he was kind of a d-ck, and not the good kind. I'd like to think that 5 years later when I talked as a patient/consumer advocate and Ryan White Quality Management Co-Chair to the NC and SC agents that they thought about their approach.....but I didn't hold my breath.

I asked this guy if I am now on a permanent blacklist loacl state or federal? His answer very ambiguos. So basically I have a scarlett letter on my forehead in the state computer system for life?

I also wonder if the police, emergency medical personell etc are informed of my status automatically if i am pulled over or hurt etc?

the answer to that is No.
Your provider/doctor will know your data and the randomized identifier connected. However the State will only have your anonymous data

Emergency responders (police, fire, ambulance) would never know your status. Quite frankly, unless your health emergency was directly due to HIV or you bleeding out like a stuck pig, none of those people would need to know.

Oh, I know this has been a lot and can't miraculously fix the bad interaction you had, but I hope it was enough to get a feel for how both sides feel about contact tracing - how effective it is, and unfortunately that no patient really likes it.

one final note, don't ever think of living with HIV as being branded with a scarlet letter. You'll find that no one looking at you will ever know unless you tell them. For those in the medical community to which we have to disclose once in a while, they simply don't care. HIV is coming up on being a 50 yr situation in America. Medical personnel have either had HIPAA drilled into their heads, have already seen it, or simply use universal precautions to not put themselves at risk and don't care that you are hiv+. Feeling like you're living with a scarlet letter is just self stigmitization, and don't you probably have enough problems in life without doing that to yourself?

[kentfrat1783]

I am from Ohio and when I was diagnosed back in 2017 the state nurse was also calling me and then stopped by my house after I wouldn't take her call.  I had no idea who she was but after a little Google work I understood it was a state law for the contact tracing.  I didn't have an option (in my opinion) to not talk so I eventaully did, she did explain the process, what would/wouldn't be disclosed and no additional action after that.  This was also just after being discharged from the hospital and only had one ID Dr visit after so I was still out of it and confused.

I did feel better after we talked as I received additioanl resources but also understood that I was in the "system".  I'm now to the point if the Health Department would call me I answer (for any other issues), give them any needed answers and it's over.  They have even stated if needed I can just respond with "Yes" or "No" and they are good with that.  They are only doing their job.

Now if they call, it's "did you know X test was "reactive"?  Well yes I do as I just talked to my Dr the other day and we are treating it.  Even better when I say "No" it isn't being treated as if you look at these other two tests it shows it's not an active case.  They don't like it when you know the tests and they can't trick you on something.

The biggest point I want to make is don't think bad of your Dr.  They do follow HIPAA but they also have licensing requirements they must follow.  They only provide what is needed.  If you have questions make sure to talk to you Dr the next time on "what are your reporting requirements?"  Just having that two way communication should be good.   

On a postive note, how are you doing?  I hope well.

[leatherman]

They do follow HIPAA but they also have licensing requirements they must follow.  They only provide what is needed.  If you have questions make sure to talk to you Dr the next time on "what are your reporting requirements?"

Almost all HIV/Infectious Disease/Federally Qualified Health Center providers (doctors, clinics, etc) accept Ryan White funding and/or patients receiving RW assistance. This means they all conform to following required Ryan White requirements which were built into the law to ensure that HIV health care is quality health care working towards treating patients and preventing the transmission of HIV. This is a good thing as it means ALL patients whether insured or subsidized with RW funding are receiving quality care.

There is a long list of quality measures that are recorded, aggregated, and examined to ensure quality healthcare:

HIV Viral Suppression - percentage of patients virally suppressed VL<200
Prescription of HIV Antiretroviral Therapy - percentage of patients prescribed ARVs
HIV Medical Visit Frequency - how many medical visits per year
Gap in HIV Medical Visits - time range between medical visits
PCP Prophylaxis - percentage of patients with cd4<200 prescribed bactrim
Annual Retention in Care - percentage of patients receiving care throughout the year
Chlamydia Screening
Gonorrhea Screening
Hepatitis C Screening
HIV Risk Counseling - patient told about transmission risks; daily treatment required; U=U
Pneumococcal Vaccination
Preventive Care and Screening: Screening for Clinical Depression and Follow-Up Plan
Preventive Care and Screening: Tobacco Use: Screening and Cessation Intervention
Substance Abuse Screening
Syphilis Screening

as you can see your personal data is only known by your physician/provider. Data about your case is known at the state level but only as part of the totals and percentages. For example, that state would have data that might show that your provider has:

86% of PLWH are virally suppressed
98% of PLWH prescribed ARVs
74% of PLWH have 4 medical visits a year
100% of patients with cd4<200 prescribed bactrim
76% of patients receiving care throughout the year

reaching 100% of these goals is the ultimate goal; but a very improbable goal to reach. Some patients have issues staying adherent to meds; others have issues remaining in care. But these numbers help to weed out bad clinics, and help all clinics and state work towards the 100% goals thereby improving the quality of care the PLWH receive.

I am from Ohio and when I was diagnosed back in 2017

way back in 1992, I was the 27th person diagnosed with HIV in Stark County (Canton) 

[Charles.M]

Thanks for the replies:
Leatherman
I know this is legally required but along with that the ID doctors should be legally required to inform you about this process IMO. You alluded to but did not state exactly that you did contact tracing, did you work for the state? As always I value your knowledge experience on all subjects HIV. I guess this is just something else to deal with. He and you both explained part of his job is to help people with resourses and treatment as well, however I pretty certain after talking to him he will be of little help if any. Just to be clear once he is done with me the data he has on me is maybe controlled to a certain degree but it never gets deleted?

I also may relocate to Florida, so as you pointed out I will go through this all over again.

Kentfrat1783
I am doing ok physically and mentally thank you for asking. I worry constantly about anything that appears on my skin, KS scares the hell out of me. Mentally this is certainly a tough one for anybody. I also have moderate to sever joint pain in my right elbow should and forearm (somedays are better than others). I have discussed these issues with ID doctor and she seems to blow them off? I may look to see someone else. I suspect that my next blood work will reveal I am UD or hoping anyway. I am also highly concerened that CD4 go up.

You answered a question I was leery to ask, First I do understand thier purpose and not in anyway advocating non compliance but; What if you refuse to talk to them? Will they hunt you down? Can they arrest you?

[leatherman]

I know this is legally required but along with that the ID doctors should be legally required to inform you about this process IMO.

I agree wholeheartedly. I think in general doctors need more training about what to really tell patients about. Being diagnosed and living with HIV come with more issues than just to undetectable. Paperwork, state requirements, access to meds through insurance or medicare/caid. Understanding what kind of blips to be concerned about; how to look at the trends in your bloodwork, etc.

I also think that anyone who comes to an ER with severe or unidentifiable cause of symptoms should be tested for HIV. Unfortunately many providers (like hospitals) don't test for HIV unless specifically requested. Too many times people will enter the ER or visit a doctor office multiple times with various symptoms before anyone suggests or requests an HIV test. An earlier test at the first would get people into treatment sooner.

You alluded to but did not state exactly that you did contact tracing, did you work for the state?

For about 12 years I volunteered in two clinics as a speaker, peer support and chair of the patient/"consumer" committee. I did a lot of time working health fair booths and speaking with college students about prevention, treatment and living with HIV. I assisted with about a dozen Ryan White quality improvement projects. I "worked" with both the North and South Carolina Ryan White departments and the Charlotte RW TGA as patient advocate and Consumer Co-Chair of all three Quality Management programs

My two proudest accomplishments were creating the artwork for an HIV information advertising campaign that ran in Charlotte buses and lightrail stations for over 5 years; and I was co-director of the SC HIV Task Force for numerous years as we advocated to our state legislators about increasing ADAP funding for meds during the ADAP crisis from 2008 to 2015.

So while I didn't get paid by the state I did work with local and states health departments for over a decade and learned a lot about funding, quality requirements, state health departments, and HIV interventions.

He and you both explained part of his job is to help people with resourses and treatment as well, however I pretty certain after talking to him he will be of little help if any.

Little help is about it. basically their job is to make sure people diagnosed with HIV know not to transmit it and to get to a doctor and onto meds.

Just to be clear once he is done with me the data he has on me is maybe controlled to a certain degree but it never gets deleted?

after this interview, your case just becomes another completed case in a data file in that outreach department.

I also may relocate to Florida, so as you pointed out I will go through this all over again.

Depends. DeSantis has made a mess of Florida and instead of upscaling STI/HIV contact tracing for Covid, tracing fell apart. You might not ever hear from the state health dpt. Of course, it should be easier to find a new doctor as since FL ties with GA for having the third largest percentage of people living with HIV.

You answered a question I was leery to ask, First I do understand thier purpose and not in anyway advocating non compliance but; What if you refuse to talk to them? Will they hunt you down? Can they arrest you?

the easiest way to deal with the health department....and since they have already interviewed you and you should never hear from them again....is to answer what you want. If PLWH know about enough about HIV and their treatment options, those outreach agents really don't have to be a problem even if they are intrusive and unhelpful.

No, you don't have to answer their questions. Maybe, they might try to hunt you down but only if hunting entails a couple of letters and/or phone calls. Disclosure and HIPAA issues require discretion. No you can't be arrested for not replying or not appearing

[kentfrat1783]

I have discussed these issues with ID doctor and she seems to blow them off? I may look to see someone else.

This brings up two different thoughts:

1) It takes a while to find an ID Dr that fits with your needs. I am now on my third ID in just over 6 years.  The 1st one was the one that diagnosed me in the hospital, and he was good in the hospital but could care less about me in the office.  Then 2nd, I then decided to get out of town and go to Cleveland Clinic that is just under 3 hours away from me.  I needed the time, able to talk and feel I am getting the care I needed, and I got that and more.  Now I am converting to a local ID Dr that looked after me while I was in the hospital last November.  He is giving me the time I need, local, and, he is working my other specialist and that feels amazing.

If you don't feel you are getting the care, you need to look around to see what else is available.  And I'm not trying to make you talk to the nurse that is calling you but even mentioning that you don't feel you are getting the best care do you have any other Dr's I could talk to. 

2) As an Infectious Disease Dr is a specialist and many times, they will only discuss things that are directly related to your HIV.  Many times, they referred me to my Primary Care Doctor, or another Specialist and I got used to that after a few visits.  I still tell my Dr's (I see three) my issues as something I say they could pick up on an issue they would want to investigate more. 

On a plus, my current ID Dr has mentioned that if wanted he could also become my Primary Care Dr and I may investigate that next year. Having one less Dr would be great and knowing he is able to look at other things is great.  He is also working with my Neurologist on different tests.



I just wish it wasn't so hard to get help but like anything it takes time to find the team that works for you. 


Side note:  I'm unsure how you are getting your Rx but many of the pharmaceutical companies have programs to help with copays and deductibles.  I get mine through the local pharmacy and they helped me get into contact with the correct number to assist.   


Lastly, it took me a few years to learn (and realize) but I can live like I did before.  I am still careful but I can still travel, eat out, swim, cry, have friends, date (well trying), have a drink, still need to work and look towards the future.  Don't let this hinder you from living the life ou want.

[harleymc]

Oh the drama.

This is contact tracing. No more no less.

Just get the interview over and done with, as a bonus you will have faced down an|less anxiety.

[harleymc]

What's all this paranoia about the state?  I don't get it.

[leatherman]

shame/guilt of being HIV+; newly diagnosed's fear of the unknown future of living with this disease; without warning cryptic emails, letters, and personal interaction with health dpt. officials. The government seeming to want to track you and your sex life/partners. Is it any wonder people are paranoid about what the hell the gov't is up to? I doubt any sex ed classes (for those who have access to them) teaches that contact tracing will happen when you're diagnosed with an STI.

Of course, the other side sees the situation entirely differently. Their goal is simply to work towards getting the diagnosed into care and those potentially exposed into testing, all in the name of reducing the transmission of HIV. For those people, it's not a prurient desire but a goal of managing and reducing the numbers. For those they contact, it's an unexpected government intrusion right after a life-changing diagnosis while they are still worrying about their odds of survival.

I can only imagine the contacts who get reached. It must be quite a jolt to get a health department notice out-of-the-blue saying that they may have been exposed to HIV at sometime within the last few months and should get tested ASAP.