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ScotCharles
Legend

Reged: 05/06/05
Posts: 924
Loc: Los Angeles
How do you manage your health care?
      #201167 - 07/24/06 06:13 PM

HIV/AIDS is a complicated web of conditions made more complicated by the interaction of the meds on our body chemistries. I would think that a specialty would have developed over the last 25 years that focused on the long term management of people with HIV/AIDS. I imagine this as a primary care physician who has extensive knowledge of HIV/AIDS who calls upon the expertise of other specialists as needed.

For instance, if the meds cause liver toxicity, a hepatologist would be called in, or if long term infection caused cognitive dysfunction, a cognitive psychologist would be called in.

I had this sort of structure when I was with Health Care Partners in LA, but frankly their emphasis on the bottom line and cheap providers was disheartening. I also received dreadful care and was nearly killed several times by their incompetence.

My new HIV doctor, Dr. Sampson in Hollywood, seems well intentioned, but I am never physically examined (lungs, heart, abdomen - sort of thing) and he refuses to coordinate care with my hepatologist. I haven't had a proper physical in years.

In the UK, my HIV/AIDS specialist coordinated all my care with dentists, etc. However in the US, this does not seem to be the model.

I am very curious, how do you guys manage the complex web of providers necessary to keep people with HIV/AIDS healthy? What happens as we get older and we need oncology and cardiac care, who will make certain that our symptoms are managed with our long term condition in mind?

Isn't this sort of model the way diabetics and hemophiliacs are managed.?

Let's parlay, I am very curious.

--------------------
Life is a river.
Carpe diem.

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Blixer
Legend

Reged: 01/10/06
Posts: 599
Loc: Missouri
Re: How do you manage your health care? new
      #201185 - 07/24/06 09:58 PM

ScotCharles,
I totally understand what you are saying. I was very disheartened with my HIV specialist even though I picked a place that I thought would have extremely good care. So what I have done is keep my HIV specialist, but gone with a GP that also treats HIV patients. It's a lady, but I've gotten some of the best care and and a total physical exam. She is very willing to work with the other doc as the main HIV provider but she also knows her stuff and is keeping a very close eye on everything that needs to be watched. So far it has worked great. Time will tell....

--------------------
David
Sustiva, Epivir, Videx EC


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Blixer
Legend

Reged: 01/10/06
Posts: 599
Loc: Missouri
Re: How do you manage your health care? new
      #201198 - 07/24/06 10:39 PM

Donnie, I really liked the GP I had used for years. She was sharp enough to kind of pin down the HIV thing earlier this year. But, when I tested positive, it was kind of like she was afraid to do anything any more. Not that she was afraid of me, but that she really didn't know how to treat an HIV positive person or what to look for. So as much as I hated to, I knew I needed to move on. And I do think I have found a good one.

And unfortunately, as good as our health care system is in the US it still has a long way to go in treating many chronic conditions, HIV included. It seems that those of us who are positive are kind of left to fend for ourselves. We have to kind of watch the medical system at times to make sure they aren't doing things that unintentionally hurt us. I had my major issues when I started meds and the HIV folks were kind of... "well, we just don't know what's going on... are you sure it couldn't be something other than the meds." It's like duh.... sometimes.



--------------------
David
Sustiva, Epivir, Videx EC


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alivehoping
Legend

Reged: 04/05/06
Posts: 655
Re: How do you manage your health care? new
      #201205 - 07/24/06 11:25 PM

i can understand that blixer,my gp did the same for me,i went to the er like 6 times for swollen lymph nodes,and i seen her because shes taken very excellent care of all my family.i didnt have health ins,but was seen a few times by her while i had an appointment for one of my children,i kinda snuck under the radar,she knew what was happening before i did she went so far as to bring another rn into the romm the day i was diagnosed not just for a counselar,but she had extensive knowledge of hiv/aids.and that said to me she was a real caring doc.but in the same time she told me the same she didnt want to go any further with me because of the complexities,and referred me to a hiv/aids specialty group,the rest of my family still have her.at first what seemed as a kind of ignorance on her part was actually my ignorance as i didnt understand why she shunned mye to different docs.before any of this i had 2 docs my hole life 39 years,but now i have too many,the corprate wold is to blame,the bottom line is always the reason its hard to get more than one doc at a time,and then you have to get referrerals,its a long drawn out thing thats way out of sync.its like the companies feel its a lottery to get a drug contract with fda approval,all whos ass is getting kissed and who knows.its a sad way but i need what we do get,albeit im sure we all would aggree on that,i think a socialized health care system would be better here like used in canada,people wouldnt be fearfull of getting things done if they didnt worry about how much it costs,we are under the duress of corprate america and special intrest groups,and politicians who dont have a clue .i think i hit them all if i missed some remind me im wrighting a long paper to congress,i really am,because i lost my doc because of fundidng cuts,how that for our health care system in the not so free usa.im not anti america,cause you guys got the indians surrounded again. i think i answered or created a few new questions for you to scotcharles,take care

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eleniel
Guru

Reged: 05/27/06
Posts: 239
Loc: Utah, USA
Re: How do you manage your health care? new
      #201213 - 07/25/06 01:41 AM

manage? hahaha yeah right...

Well what I do is, I have no GP. I have no dentist, and I have no insurance. I go to a free clinic (and pose as homeless..the shame..) for my medical needs, and I am lucky to be able to see my HIV/AIDS dr..(I see her at a real hospital) unfortunately, the orginization that funds my hiv care is dealing with budget cuts so that may soon end...
oh, and I don't think they cover meds..just dr visits...good thing I don't need meds yet...

The Plan: Get a job with good health benefits..fail to mention my pre-existing conditions on the insurance paperwork (doesn't require a physical or anything) and hope to slide by...

--------------------
6/29/2010: vl 68,000 cd4: 205

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alivehoping
Legend

Reged: 04/05/06
Posts: 655
Re: How do you manage your health care? new
      #201214 - 07/25/06 01:49 AM

i just lost my doc to the budget cut cenario,i have an address if you need one,lol,just take real good care of yourself till then,and hopefully you wont need meds for some time.good luck on the job search,i have 6 monthe before i can start working again,and the walls are closing in on me.keep on fighting,take care

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eleniel
Guru

Reged: 05/27/06
Posts: 239
Loc: Utah, USA
Re: How do you manage your health care? new
      #201216 - 07/25/06 02:44 AM

yeah physically i'm fine just concerned about the cd4/viral load trend thats been going on. anyways its not for sure than i'm losing my dr yet, but the budget can't cover meds. I'm looking into other options with my ASO but its pretty slim here.
I have a job but i'm only a temp. if i can get permanently hired as a regular employee i can get really good benefits (and tuition reimbursment, etc). but that won't happen until my contract expires (and it was just extended for another 3 months).

You'll find a good dr that'll stick with you. I know its frustrating (took me a year to even get one) but you'll find the one thats right for you.

--------------------
6/29/2010: vl 68,000 cd4: 205

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alivehoping
Legend

Reged: 04/05/06
Posts: 655
Re: How do you manage your health care? new
      #201220 - 07/25/06 02:57 AM

i reallt hope so this is the third doc in 4 years now,hope things go good for you

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ScotCharles
Legend

Reged: 05/06/05
Posts: 924
Loc: Los Angeles
Re: How do you manage your health care? new
      #201260 - 07/25/06 12:18 PM

Under federal law a pre-existing exclusions cannot discriminate against a particular condition (either all get one or none) and the waiting period can only be one year, many states have adopted much shorter exclusion periods.

Discriminating in employment because of your HIV status is prohibited by federal law.

--------------------
Life is a river.
Carpe diem.

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ScotCharles
Legend

Reged: 05/06/05
Posts: 924
Loc: Los Angeles
Re: How do you manage your health care? new
      #201262 - 07/25/06 12:29 PM

I am also thinking of getting a GP to coordinate my care, but the pickings are slim in LA for GPs, most seem very underqualified. How did you find her? I had an HMO last fiscal year, but found the care model too low rent for my taste and the doctors were grossly incompetent. The stories I have told on this board!

Curious, you say you have a female GP, did she do a prostate exam? I once had a women GP with a manicure who refused to do this important test, PSA tests do not tell the full story. Also men your age are very prone to testicular and penile cancer, did she check around there? Since you are sexually active, did she check around for anal warts?

I trust I don't sound like a perv, but gay men have very specific health concerns.

I am going to get this medical care right. When next I meet with my HIV doctor who bills himself as a full care HIV specialist on his website, www.lascma.com, I am going to tell him of my disappointment with his care.

--------------------
Life is a river.
Carpe diem.

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ScotCharles
Legend

Reged: 05/06/05
Posts: 924
Loc: Los Angeles
Re: How do you manage your health care? new
      #201265 - 07/25/06 12:36 PM

I agree. I have the most expensive and best health care money can buy, yet I get crap service from disinterested doctors. I don't mean to brag, but imagine what level of care others with HMOs and public assistance must receive?

I am 51, 22 years with HIV, liver disease, a bad heart, breathing problems and all my health conditions are intertwined with AIDS. I find it very difficult to coordinate all my doctors, most of whom refuse to speak to one another, or use the other's tests.

This, my friends is inefficient and a waste of medical resources. No wonder we have low levels of care in the US and no wonder people with AIDS live longer in Europe and Canada than they do in the US.

I'll let you know how I get on with this quest.

--------------------
Life is a river.
Carpe diem.

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PositiveInPVD
Fanatic

Reged: 03/12/06
Posts: 55
Loc: Providence, Rhode Island
Re: How do you manage your health care? new
      #201279 - 07/25/06 02:11 PM

With things such as HIV, insurance companies will dig more to try and prove it is a preexisting condition that isnt protected by HIPPA. I guess it just depends on the insurance company. I had one who didn't require anything and just continued to cover without question, and I had another that, when I transferred, didn't pay for the bill until I provided my Certificate of Coverage from my previous employer's plan. Just an FYI. Guess its just luck of the draw. I am now in a situation where I am unemployed and dont have coverage which has lapsed 60+ days, so I can in all legality be precluded from coverage when I am working again under a new health care plan (hopefully sooner than later). I'll pray the insurance is good and doesnt dig and ask for anything or put up a fight.

--------------------
CD4 808 (41%), VL <75, liver still functioning great,lipids normal!!!

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ScotCharles
Legend

Reged: 05/06/05
Posts: 924
Loc: Los Angeles
Re: How do you manage your health care? new
      #201287 - 07/25/06 02:59 PM

A Certificate of Coverage is required as evidence of previous insurance, but there should be a procedure if your former employer did not give you a Certificate. Yep, at 60 days without coverage, you will likely have a preexisting exclusion period; I assume you opted not to get the COBRA coverage, too bad.

Take heart, this area of the law is so much more HIV friendly that it was 20 years ago when I got into this business.

--------------------
Life is a river.
Carpe diem.

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still_here
Guardian

Reged: 02/01/06
Posts: 389
Re: How do you manage your health care?
      #201291 - 07/25/06 03:07 PM

for me... the ID tells me i need to see a "whatever the heck kinda doctor" and then i find one, and try to make an appt. once i get there, i have to go thru the whole tangled story of why i'm there & it goes from there. right now i'm on the search for a gynocologist oncologist because of my HPV & PID. i have a cardiologist for the heart murmur, a primary doctor (who will kill me if i give him the chance to treat me ever again) and i have to find a dentist/oral surgeon. it's a mess. i wiss my ID could coordinate everything for me.. sure would make life a lot easier.

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PositiveInPVD
Fanatic

Reged: 03/12/06
Posts: 55
Loc: Providence, Rhode Island
Re: How do you manage your health care?
      #201307 - 07/25/06 03:43 PM

Yeah, I know it sounds silly but i cant afford the COBRA. I mean its really a rock and a hard place scenario. Helthcare coverage and no food, or vice versa. I am gonna go to the local ASO and see what help I can get with meds. I have taken a self-induced drug holiday to hold onto the 3-month supply I managed to slide in under the wire, but thinking I will start up again and hopefully one of two things happen, a.) get a job with coverage (which as I stated will probably still leave me without coverage for HIV/AIDS) and/or b. get some assistance with ADAP. I think with a fight and just utilizing all resources I can get by. The thing is I think sometimes these plans preclude certain income levels, with requirements I dont think are possible. Yeah, so you make 65-70K a year in New England. They likely tell ya you dont qualify. Well meds and AIDS care are probably 20-25K a year for a "healthy" lad like me. Thats probably 4 times any "discretionary" income I had with my salary, at just an estimation. My first glance of assistance programs is that it's based on a set criterion which was obviously part of the legistation, but nonetheless doesnt seem to account for neither the individual circumstances of the client nor the hefty cost of care for the most healthy of patients on a HAART regimen.

More disheartening was when I initially inquired to the program which paid for continued COBRA coverage, I was turned away as not accepting any more applicants for a program which was already over-budget. Thats what disheartened me, and i shyed away, but am fearful I will get sick and need some form of assistance.

Ok sorry for the rant. Just reasoning through this. I will call them tomorrow and start the ball rolling with something. Wish me luck so as not to get more excuses of dried up funds or disqualifying factors.

Todd

--------------------
CD4 808 (41%), VL <75, liver still functioning great,lipids normal!!!

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