Transfer Care to NYC? Advice?

[SteveS]

Hey all -

Thanks again for your patience. I think I am calming down. It puts it in perspective when your Doc is much more worried about your cholesterol level than your HIV.

Question. I live in a small town, do not want to disclose, and it may already be too late (even with Hippa) to think that things don't get around this town. At any rate, my business does bring me to NYC about every 6-8 weeks. I was thinking of seeing if my insurance (which is good) will allow an out of area coverage, and seeing if there was a Group / Doctor / Practice whatever specializing in HIV and I could make the 2 or 3 or 4 appointments I need per year for this THERE instead of my town.

First off - I would feel more comfortable as the "clinic" (there is only one in our town) is very clearly marked and is in the middle of the (only large) hospital, etc, and so you feel extremely like "all eyes are on you". And, though the NP I have is nice and I think basically on top of things, the whole scene feels very "Clinic". I am not sure if everywhere feels that way?

Bottom line - would anyone have a practice group in NYC that really seems professional and trustworthy and has expertise in this to recommend? Any thoughts if this seems a good idea?

I really appreciate it.

[mecch]

Is there a infectious disease doc in your town who has a private practice, not in that Hospital's "clinic"?  Might be another option...
My first and now my second doctors for my HIV have private offices, shared with other kinds of doctors, and there are all kinds of people in the waiting rooms.

[buginme2]

Before you search for a doctor out of the area consider this.  If you experience a medical problem and are in need of hospitalization it's not going to be of any benefit to you if your regular HIV doctor is out of the area.  You would do much better if the doctor was local so the hospital would have immediate access to your medical record.

What do you mean by "the whole scene feels very clinic"

Does it say AIDS clinic on the door or something?  What about the set up bothers you?

[SteveS]

Bug -

I had not thought of that - I guess - with all the talk of life being normal and not needing to worry so much about that all...I mean - I have never been hospitalized in my life....

Yes, it actually does say "AIDS Clinic" basic....Literally "Immunodeficiency Clinic" and you walk in and EVERYTHING is HIV POZ this and that.....magazines, brochures, everything, and the place just seems very.....I really don't know to say it without coming across as a total snob...I have lived an upper middle class existence and this place just definitely is the FAR SIDE opposite of that....and again, it is literally in the middle of the ONE major hospital in town.....so anyone sees you coming and going from there - that is it. And I own a pretty well known business in town, etc....

I honestly feel like I would prefer to get the HIV treatment / monitoring out of town and God forbid anything terrible happens cross that bridge if it ever happened....but I don't know...It is good to think through and talk out. Anyone on here have any good NYC places to recommend?

[jkinatl2]

Bug -

I had not thought of that - I guess - with all the talk of life being normal and not needing to worry so much about that all...I mean - I have never been hospitalized in my life....

Yes, it actually does say "AIDS Clinic" basic....Literally "Immunodeficiency Clinic" and you walk in and EVERYTHING is HIV POZ this and that.....magazines, brochures, everything, and the place just seems very.....I really don't know to say it without coming across as a total snob...I have lived an upper middle class existence and this place just definitely is the FAR SIDE opposite of that....and again, it is literally in the middle of the ONE major hospital in town.....so anyone sees you coming and going from there - that is it. And I own a pretty well known business in town, etc....

I honestly feel like I would prefer to get the HIV treatment / monitoring out of town and God forbid anything terrible happens cross that bridge if it ever happened....but I don't know...It is good to think through and talk out. Anyone on here have any good NYC places to recommend?

Many clinics in NYC cater to residents first, sometimes only. You might try calling the GMHC in NYC and getting some referrals.

This might work for months, perhaps years if you are lucky. But in the scheme of things it is a temporary solution.

Modified to add: I hate to say this, but you might eventually have to hobnob with poor people, either in support groups or at a clinic. There are certainly "boutique" HIV clinics, but almost all of them are in larger cities and theu are pretty strict about their clientele. You've received some great advice and wisdom from por people.

[buginme2]

Okay, ya I go to an HIV "clinic" in a hospital but even though they call it a "clinic" there isn't an actual clinic.  You just see one of the HIV doctors who are dispersed throughout the hospital be it in internal medicine or ID.  My doctors office is actually in the cancer center.

Anyway, they can't be the only game in town.  As mech said check for an "infectious disease" doctor who has a private practice in town.

Also, check www.aahivm.org , that's the website for the American academy of HIV medicine.  They have a doc find, you can enter your zip code and they will locate a HIV doc near you (don't worry if there are no results, its not a complete list).

[Miss Philicia]

There's nothing more embarrassing than having to mix with the hoi polloi down at the ole AIDS clinic. It's one thing to service a working class boy in the bushes at a park, but having to sit next to one in a waiting room -- pft. As if! Oh. No. You don't understand -- this is an Alaia.

[mecch]

Ask your GP to come up with some suggestions for avoiding sitting in the AiDS clinic. Again, I'm sure some of these doctors have private offices, too. No?  And if you are so middle class, why can't you just go see one of the "chic" local doctors to begin with, why are you restricted to this clinic...

If its such a small town, why did they even build such a clinic? That many HIV+ people in a small town?

While your comments are snobby and off-putting, yeah, I can also see that the hospital has been clumsy about this, since they should be aware that in your small town of all eyes and gossip, if what you say is true, nobody but nobody wants to be sitting in that AIDS clinic. 

I don't see why you don't ask the hospital administrator for an idea how you could avoid it.  Just say its a matter of you feeling comfortable and discrete. But if you do inquire, keep the stuff about the socioeconomics to yourself, you know..

Is it really that you want to remain discrete?  Or is it really that rubbing shoulders with the other HIV people gives you the skeevies?  Or both.  I think you have a leg to stand on if its about the importance of remaining discrete.

[oksikoko]

There's nothing more embarrassing than having to mix with the hoi polloi down at the ole AIDS clinic. It's one thing to service a working class boy in the bushes at a park, but having to sit next to one in a waiting room -- pft. As if! Oh. No. You don't understand -- this is an Alaia.

This forum really needs a 'like' button.

[SteveS]

Gosh - lots of judgment from a judgment free zone! I just expressed one line that I have always had a traditional Dr's office experience, not "free" clinics, etc, and that yes, it is a very different environment, and one that if the HIV community is working on avoiding stigma, etc, this particular place is not doing a good job of it. Being seen there can only mean one thing.

They said there are about 450 people they service in the "greater area" which I think means a few hours around.

I don't think I have to be at this place, but what happened was when I tested poz, my GP called to find out who the local "expert" was. It is - apparently - only this one Doc who "oversees" this clinic. However, I was told that he actually does not see patients - he does research, sets protocols, etc, and there are these two NPs who actually deliver the care.

I could see an infectious disease doc - there are a few of them in town - but one of them is who referred my GP to this place. Thus my idea about NYC.

I am simply trying to be honest with my story. I don't think I have a snobbish bone in my body. It has just been an experience that has forced me to be in this clinic that has no privacy, does not seem especially well kept or modern, is crowded with things shouting HIV at you from every corner, and was a hard emotional experience. HIV impacts people from all walks of life, and this is part of my journey.

[Jeff G]

Steve , no one is judging you for not being comfortable being seen at an HIV clinic or being careful about your HIV status if you feel you might loose your job or livelihood . It takes time to get to a place where you can be honest with yourself about the fact that you are now HIV positive and your life now has changed . The part people found questionable was the part you labeled snobbish yourself . 

The way to fight stigma is through education and the willingness to stand up and be counted as HIV positive , when you can do so without fear of violence or financial ruin.

The truth is you may be able to pull off getting health care out of town for awhile but its not going to work out for in the long run I would think . 

[Habersham]

I had read all the posts here and gone away for a few minutes to think about my reply.

What I had decided to say is this:

I think everyone here has a sunny idea about what happens when one is  hospitalized and how much your GP or HIV doc is involved in the process.

When I lived in Pennsylvania I saw an HIV doctor in Philadelphia. While staying 3 hours from Philly for a family funeral I fell down a flight of stairs and was hospitalized at the local trauma center. They were aware of my HIV and my Philadelphia physicians weren't involved at all.

I contracted a non HIV virus and was hospitalized in Philadelphia at my GP's hospital 2 blocks from his office. Was he involved in my care? NO - though they may have obtained my records. He did send me a text one evening complaining about how lonely he was but that's another story.

Therefore it is possible for Stephen to obtain his HIV care in New York if he wants to. It may not be the most convenient way for him to do it, there are plenty of people who use these forums who travel 3 or 4 hours to receive care. Even if your doctor is local once you are hospitalized it doesn't matter a hoot.

Let's find out more about his geographic situation and question his motives later.

Habersham

[oksikoko]

Gosh - lots of judgment from a judgment free zone! I just expressed one line that I have always had a traditional Dr's office experience, not "free" clinics, etc, and that yes, it is a very different environment, and one that if the HIV community is working on avoiding stigma, etc, this particular place is not doing a good job of it. Being seen there can only mean one thing.

I am simply trying to be honest with my story. I don't think I have a snobbish bone in my body. It has just been an experience that has forced me to be in this clinic that has no privacy, does not seem especially well kept or modern, is crowded with things shouting HIV at you from every corner, and was a hard emotional experience. HIV impacts people from all walks of life, and this is part of my journey.

I judge everyone, and would not trust anyone who said they don't. How else do you make decisions without judging something?

In this particular instance, I was showing my appreciation for Miss S and Miss P, and I do hope you weren't offended by my post. It sucks to have to go to a doctor you're not comfortable going to. I lost my health insurance a month after my diagnosis and was switched from "doctor" to "clinic" in the same office pretty abruptly. You're correct that there can be a difference in level of treatment. I do tend to forget that other people need privacy since, as a health-ward of the state, I lost that luxury and am routinely interviewed about private sexual and other matters with doors wide open or screaming children three feet from me. Those children have learned some interesting terms, let me tell you. The people interviewing me have too, for that matter.

I digress. I know of private specialists, but I don't know how they choose clients. The only advice I could give would be repeating what jkinatl2 said: try calling GMHC for advice or a referral. I'm a client there, but I don't know how local they keep things. They're good at almost everything and connected me with the Spencer Cox Center for Health (formerly Center for Comprehensive Care), which is the best thing that ever happened to me health-wise. From their website:

"Please note: To ensure we provide you with the best service, the intake department has a client capacity threshold each day and we see clients on a first come, first serve basis. We are able to see 10 clients on Monday’s, 6 clients on Tuesday’s, 5 clients on Wednesday’s, and 6 clients on Thursdays. For more information or to make an appointment, please call 212.367.1297 or 212.367.1056 or e-mail intake@gmhc.org."

Good luck in your search for a solution.

[SteveS]

All -

Can some elaborate as to why there is so much feedback that "long term, it will not work to have your HIV treatment out of town?" Again -I am in NYC at least 4 times a year. Often more.

I am asking for examples or understanding as to why that would be difficult? What am I missing? I thought the main part of HIV treatment was blood labs, which hopefully will soon be undetectable and remain that way, and picking up meds, and discussing new treatment options as they become available. I feel from everyone's statements that I must be missing something, but don't understand practically what that is.

Thanks for your help.

[SteveS]

oksikoko - again - you crack me up. no offense taken. I realize others may or may not have been speaking ironically. I guess it stings a bit when I prefaced my comment saying I was hoping I did not come off as snobbish to then be labeled that. I have worked very hard in my life, built a business from nothing, and yes, my livelihood and entire life circumstance would, I think, in this small town, be drastically changed by being "outed" with this. anyway - I am not going to beat this to death or defend myself. let's just move on.

I will call GMHC and see what they say. THANK YOU. Does anyone else have a private HIV specialist they see and like in NYC?

[mecch]

My response to you, Steve, is that yes, you should make an effort to get the discretion that you feel comfortable with.

Even though doctors have sent you to this "clinic", it sounds like if you stand up for what you need, you may be able to find a workaround locally, avoiding having to go to New York and also avoiding having to sit in the waiting room or enter and exit this place. 

You aren't even seeing a doctor there!?  So why are doctors -who could be treating you -- sending you to see NP's, for example.....

I am somewhat wondering if the comment about class is, in fact, really a part of this story...  Meaning I am wondering if whatever insurance, access, etc, you have now, paying your HIV treatment, is providing service that clashes with your self-perception of who you are, your place in society...

This is entirely human -- you're going along, happily, solid in your worldview, and then life throws curve balls, and voila, you're in a situation, feeling like you are NOT in the "setting" or living the life that is "who I am."

(Lots and lots of HIV+ people deal with this after diagnosis, just "I cannot be a person who has that disease."  And then every HIV diagnosis comes with a financial burden and this really shakes things up... especially in countries where quality of care is connected to socioeconomic class.)

Its a part of life's journey to come to grips with your self definition, in addition to the way others define you.  Many times in life.

This isn't a battle that not only HIV+ people must fight. For example I saw my dad struggle in his mid fifties when he was force retired from his job, which was his world and defined who he was.

Please try to remember, social class is both real and "constructed". Don't let it be a prison.   

[mecch]

You are hardly alone...  I think a fair chunk of the US middle class is uneasy, and rightly so.  They have a perception that they are somehow among the "haves" but the situation these days makes it seem they are more realistically among the "have nots".   An excellent education, healthcare, homeownership, a secure retirement.... "Middle class" people thought this was all guaranteed and now its an endless struggle.

The solution is not to disparage the have nots..  Redefine the "class consciousness" and everybody work together to get the quality of life that a rich country should be providing to everyone.....

Ok sorry for the hijack...   

 

[SteveS]

This here is really my core question - any answers will be so appreciated!

All -

Can some elaborate as to why there is so much feedback that "long term, it will not work to have your HIV treatment out of town?" Again -I am in NYC at least 4 times a year. Often more.

I am asking for examples or understanding as to why that would be difficult? What am I missing? I thought the main part of HIV treatment was blood labs, which hopefully will soon be undetectable and remain that way, and picking up meds, and discussing new treatment options as they become available. I feel from everyone's statements that I must be missing something, but don't understand practically what that is.

Thanks for your help.

[mecch]

Even when someone is living healthy with HIV, the best "standard practice" is that he/she gets her labs done IN ADVANCE, then goes for a sit-down with the doctor...

Thats just one example....

Medicine is acquired at the pharmacy, not the doctor.  By the way.  Do you have to get your medicine at that so-called AIDS clinic?  This is the US, right?

I suggest with kid gloves that you have only let into your mind a limited, stereotyped conception of what "living with HIV" and "HIV care and treatment" entails.  It's the "one pill a day" smooth sailing story.   That might be your experience, might not.  But there is a lot of expertise going on, by health professionals, keeping that person in that good, living healthy experience.

If all you want is labs, and pills, your GP should be able to handle this. 

If you hope to see a doctor in NYC, you'll still need to have blood drawn in advance, where you are, and the results sent to that doctor....   If you are not going to be doing that, then I think you'll be in the same, clinic - NP situation in NY, as in your town.  The only thing that will be different (and its a goal for you) is that you will be sitting in an HIV clinic in NYC, discretely away...  Gonna have the same brochures all over the place, you know...

[Ann]

Steve, I live on a Rock in the middle of the Irish Sea with a population of only around 80,000 odd people (odd probably being the operative word ) and I fly over to Liverpool for my hiv care. It takes up an entire day involving over six hours travel round-trip.

I travel that far not through fear of being outed where I live - I'm open about my hiv status - but because the hiv care offered here is sub-optimal. I've been doing this for over twelve years now.

What I do is keep my local GP in the loop. When he first became my GP, he had a very basic understanding of hiv and I've done a lot to get (and keep) him up to speed over the years. He's retiring at the end of the month and I already have an appointment in early July to interview and (hopefully) start training his replacement.

I've encouraged my GP to ring my doctor in Liverpool when he is unsure of something regarding my health and he has, with my specialist's blessing. They've worked as a team, albeit over the phone, over the years and to great effect.

I will be taking the same approach with my new GP and if he isn't receptive, there are three or four other GPs at the office I'm free to chose amongst. If he doesn't pass my first "interview and training" session, I'll go on to the next.

I'm not looking forward to the process, but my current (retiring) GP seems to think we'll be a good fit. He's going to fully brief the new GP on my medical history. I hope he's right about the new guy being a good fit. I'm sure gonna miss him.

So what I'm saying is - I'd highly recommend that you have someone local who can look after your basic health care, who at least has a basic understanding of current hiv treatment, and who will liaise with your specialist wherever that specialist may practice. You may have to "train him up", but if you find a doctor receptive to this type of doctor/patient relationship, you'll find it's rewarding. I have.

You'll have to be your own advocate and be vigilant about it, but you strike me as someone who could accomplish that.

[Jeff G]

I'm loving Ann's idea , it doesn't have to be an all or nothing thing and bringing a local doctor into the team certainly solves some of the concerns I would have by having an out of town doctor .   

[darryaz]

If all you want is labs, and pills, your GP should be able to handle this. 

I'm considering leaving the Medical School-affiliated clinic where I've been going because I had a great relationship with one of the residents who is now finished and going to work at a private Internal Medicine practice.

I haven't decided for sure whether or not to do it - there are definitely advantages to using the clinic where they see HIV cases every day.

This is a luxury I'm very grateful for as Medicare goes into effect for me in August.

[Ann]

There's one caveat I neglected to mention above, but it's something I've become so accustomed to that I didn't think to mention it at first.

When I'm in Liverpool, I get my bloods drawn after my appointment with my doc. I don't get the results for at least three months when I'm over again.

When I was newly diagnosed I went over every six weeks, one time to get labs done, the next for the actual appointment. We mainly did this because it also allowed me to access the support from the ASO on a regular basis, something we don't have here. This meant I only had to wait six weeks for my results instead of twelve/thirteen. All that ended after I'd successfully cleared my hep C infection back in 2003.

While having to wait so long for my results has been a lesson in patience (boy-howdy has it!), I do know that if there is anything amiss in my lab-work, I will be contacted ASAP. They've only had to do this once for me, but they've contacted my partner quite a few times over the years. Sometimes he's had to fly back over to Liverpool, sometimes he's only had to have a follow-up with our GP.

Also, when I first started meds last July, they let me ring two weeks later to find out my CD4 and VL. This is something they don't normally encourage (because it's a large clinic with a heavy case-load) but they allowed it until I reached UD.

Now that I'm UD and stable, my specialist only wants to see me every six months. I saw my (retiring) GP last week to discuss having labs done in-between with him and he thought it was a great idea, but it's something I'm now going to have to negotiate with my new GP. (Retiring GP is going to recommend this course of action, we'll see what happens.)

To be honest, it's not even really my CD4s and VL that I want to check more often than six months, it's all those other pesky labs (CBC, chem screen etc) that I want to be able to keep an eye on.

[Miss Philicia]

Surprisingly, during all of this thread nobody has gone further with the question of whether or not private insurance will allow this. When I was on private insurance -- three different very good NY policies spanning over a decade, one was limited to a certain geographic area for routine care. I believe you could access outside of that area for emergencies, or something that needed pre-approval, but not for routine care. For example anything in either the five boroughs of NYC was covered, and maybe even all of NY state, but I don't think I could go to a doctor in New Jersey or Connecticut. Obviously if you know the city/metro area well the shortest span from northern NJ to southwest CT is a mere 25 miles, with a sliver of New York state's Westchester county in between. The population is so large and there are so many doctors/specialists it never was a bother, but I'm just saying that's how it was set up at least back then. I can't imagine private insurers have gotten any nicer about the issue in the last decade, if anything more draconian.

Similarly I had a friend that had a very rare form of pancreatic cancer who had to fight to get care covered at Duke University in Durham, NC while he was living in Richmond, VA -- unfortunately he passed away. Even my parents have to jump hoops if they need specialized services that take them simply from northern Virginia into DC. Sounds stupid but there you go.

So are we talking about crossing state lines in this thread or does Steve live in upstate NY?