Those of you not on meds how did your doctors react

[BootmanLA]

10 hours ago, sdcigarpig said:

Yeah, unfortunately, while it looks good on paper, however, there are complication.  I applied for such, went through the hoops.  As I am working, and married, what I got told:  I am denied, too much money.  

It did not matter that my spouse is disabled, and is on full SSD, SSI, and medicare.  And when this happened, I was told NO, I could not get in on the ACA due to it being in March, it was not considered a serious enough event to go on through there.  

And as far as Ryan White, lets just say that is all handled through another organization, Care assist in the state of Oregon.  And they do not cover primary health care doctors.  

Which by the way, in the state of Oregon, one needs in order to see an HIV specialist.  No primary health care doctor, means no specialist, which means no medication.  

And the only organization in the state of Oregon, that deals with HIV, lets just say from my experience, it is far better to try to help yourself rather than go through this organization, as they did not lift one finger to help, did not try to get me help, rather they let me fall through the cracks in the system, as I was in the grey area.  Then freak out when I am forced to ration my medications, and have my HIV unchecked.  That is my experience in the state of Oregon, still on going.  

So since I have to help myself, it meant me redoubling my effort and praying I make it until March, when I can get benefits with a new job.  That I landed.

First - congrats on the new job! I hope things hold together (as well as is possible) until you can get on the company health plan.

Second - I'm honestly shocked that Oregon, which is usually at the forefront of fixing things like this, could have these kinds of problems. It's especially concerning because under the ACA, loss of health care coverage (whether through losing one's job, having hours cut back to where you don't qualify for their plan, etc.) is considered a "qualifying event" for triggering the ability to get a plan on the ACA even if open enrollment is closed. The fact that it was in March shouldn't have changed that.

Third - you might consider going on the ACA now, during open enrollment, for January and February (and March, to start the month) to have coverage until the new job's benefits kick in. It may be a strain on finances, but it's short term, and it might be cheaper to pay for that plan than to pay for meds out of pocket. You can always drop the ACA plan once your other benefits are kicked in. Just double-check to make sure that you won't be excluded from your new employment benefits if you have another plan; normally, they can't do that, but you'd want to have something definitive before making that choice. But it would end the medication rationing a few months earlier and might help keep you healthier. Just a thought.

Lastly - I'm really, really disturbed that the designated Ryan White organization doesn't have some workaround that would apply in a case like yours. They should (at a minimum) have a network of PCPs who will agree to see a patient at least once for a fixed fee, to get the referral to a specialist, so that you can stay on meds. 

I'm lucky that my HIV doctor agrees to bill for routine care as a PCP - it's less money for the practice than if he were billing as a specialist all the time, but it means ONE doctor overseeing my care, who understands my HIV history. I'm doubly lucky that he has a network of other providers with whom he has a good relationship, so I don't have to worry about going to any other specialist (my urologist, kidney doctor, etc.) and getting less than great care. Something else I can be thankful for this season. 

[sdcigarpig]

The ACA, yes suppose to help out with health insurance.  So here is the issue, and simple math will make it clear:  I was in a job, and make about 2 grand a month.  Minus bills, and have about 300 left.  The cheapest health insurance that is offered is about 600 a month.  The question here would be what do I do without, food, electricity and a home, or a vehicle that is required for me to get to work.  

Before you ask, yeah I did try to qualify for assistance and reduced cost, and once again, the answer is no, and what they look at is the gross before taxes that are brought in, and not what is brought in after taxes.  And if you wonder how a large corporation can get away not providing insurance to people like me, the answer is simple they franchise out their stores and thus are relieved of the burden of such.  

 

[Guest FinalDL2021]

On 9/25/2020 at 7:34 PM, Guest CuriousCub90 said:

Just curious since a lot of guys not on meds still get regular checkups and viral load tests; what do docs tell you? Like do they know what’s up?

Last December/January, I was between Jobs, and health care plans; I finally decided to check out the Veterans Administration, since I served, and am eligible. I decided not to tell them of my status, and just have my basic needs met. I am symptom free, and  healthy, so far.........we will see, how this shakes out. 

[cumslutfuckpig]

On 9/29/2020 at 10:02 PM, ejaculaTe said:

@hungandmean is absolutely spot on. If you were born after, say 1995, you're not very likely to know what the 1980s and 1990s were like for gay men whose t-cell counts were under 100. But you should thank God every friggin' day for giving you a chance that they never had. 

On that note, younger folks today don’t understand how hard it was for single poz men back then.  If you know a long-term survivor, thank them for making all we have in hiv prevention, treatment, and most of all legal protections.  Then give them an amazing fuck - they’re due.  

[Guest]

On 9/27/2020 at 1:50 AM, JackEdJIZZ said:

When I was in Asheville area, I used a very unique community based provider and a fairly liberal hiv organization.    When i tested POZ they both offered options, but understood my desire to experience being POZ.   Each doctor visit they offered but never pushed.   The hiv org also had a needle exchange and I did some stuff with them.  they knew i slammed when i got knocked up and that I was willing to slam others.   But nothing was ever negative about those conversations.   

When I returned to the Piedmnont, I returned to a doctor who I used for 15 years.  He, of course, knew I was gay and was  the one who prescribed PrEP.   He was NOT thrilled that I chased....and that I was not on meds.   He was very insistent that I do meds.   In fact he suggested he would not keep me as a client if I stayed off meds.   He kept me (he is a great doc otherwise and knows me quite well both in the practice and in outside life)....if I promised to agree to meds at a level approaching aids counts......still years off.   But, each office visit...even for minor things, he lets his opinion be known......and his PA does the same.   She was not part of the practice when i went there originally.....but her brother worked for me.  She has been vocal about my bad choices and threatened a mental health lock up/evaluation.   Needless to say, am looking for a better choice in Charlotte or Winston Salem.  If anyone has a suggestion, would love to hear from you.    

I would agree with finding a different doctor would be your best bet.  There are regulations and laws on if a physician can drop a patient.  A physician can drop a patient if they are refusing he treatment or directives or other breaks in the relationship, including patient behavior (doesn't sound like any of that is happening).  The sentence that concerned me in your post is regarding his PA.  She is making a significant threat, not one she can carry out.  Having a patient committed is a very high bar, not taking your meds (unless they are psych meds) is not one.

What I encourage people to do is be an informed consumers, most people spend more time researching the purchase of a car then choosing a doctor.  Also keep in mind there are resources both state and federal.

Personally I find the PA's behavior well outside the bounds of professional and ethical.  I know in CA you can go on and file a complaint with the state medical board on-line.  You can also file a "grievance" with your insurance company.  Both of those actions require those agencies and companies to perform an inquiry, documenting their findings and results.

Doctors are people, I make room for them to have bad days like the rest of us, harassment of their patients by their staff, that isn't acceptable.  One last thought, if she is acting like this to you she is doing it to others.

[Guest cumfilledPoz]

On 11/29/2020 at 3:41 AM, sdcigarpig said:

Yeah, unfortunately, while it looks good on paper, however, there are complication.  I applied for such, went through the hoops.  As I am working, and married, what I got told:  I am denied, too much money.  

It did not matter that my spouse is disabled, and is on full SSD, SSI, and medicare.  And when this happened, I was told NO, I could not get in on the ACA due to it being in March, it was not considered a serious enough event to go on through there.  

And as far as Ryan White, lets just say that is all handled through another organization, Care assist in the state of Oregon.  And they do not cover primary health care doctors.  

Which by the way, in the state of Oregon, one needs in order to see an HIV specialist.  No primary health care doctor, means no specialist, which means no medication.  

And the only organization in the state of Oregon, that deals with HIV, lets just say from my experience, it is far better to try to help yourself rather than go through this organization, as they did not lift one finger to help, did not try to get me help, rather they let me fall through the cracks in the system, as I was in the grey area.  Then freak out when I am forced to ration my medications, and have my HIV unchecked.  That is my experience in the state of Oregon, still on going.  

So since I have to help myself, it meant me redoubling my effort and praying I make it until March, when I can get benefits with a new job.  That I landed.

Ummm as long as insurance covers it, I've never EVER had that issue with CAREAssist here in oregon

[J0nn1eb0y]

I had switched cities and it was not an issue per se. One influencer is type of doctor meaning general or specialist you may not need to see the specialist as much/at all. 
second is in general doctors deal with meds compliance in general. The US has 4-5% of worlds population yet consumes 95% of all prescription drugs. And it’s lucrative. Doctors have different types of incentives for prescribing this v that. 
I.e. doctors didn’t know the addictiveness of oxy’s?!?  Of course they did

third a doctor takes the Hippocratic oath and many care more about your wellness that they work with you if you work with them  doctors nurses deal with all sorts of shitty nonsense but they are caregivers and will look past a lot it they believe you need help and you ask  

so if you went back 10 years later and really needed help they would probably spare any lecture and get to work  

 

my buddy had a doctor who he met at a fisting party he switched doctors apparently that night  doctors are  People too smart sexy (I have  a huge uniform fetish) I knew I had  problem when  I got naked at Ice cream trucks  

 

[evilqueerpig]

I stopped seeing my Doc when I stopped meds.

[pTGoneFromHere]

On 9/29/2020 at 2:44 PM, BootmanLA said:

The majority of people on most HIV medications experience few if any side effects, so I call "bullshit" on the idea that they "hit quality life just as hard as without."

I'll wait for you to offer real data instead of conjecture or however method used for this false, misleading opinion. Maybe a lack of local news or National news led to this false narrative ascribed to the majority or however else..... It's not true. I speak as someone with experience from personal diagnosis in 2004, and knowing a number of other long-term survivors and newly diagnosed from around the globe!

Calling bullshit is your prerogative and makes sense given the incredibly untrue opinion you attempt to elevate as scientifically accurate, which it absolutely is not accurate. If you edit your comments to clearly state these are your opinion, I'd definitely laud your honesty and find it difficult to contradict; difficult but not impossible. LOL

On 9/29/2020 at 8:29 PM, hungandmean said:

Allow me to be frank here - 

Taking HIV meds will make your life *actually* better. Know why? Because without them you will get AIDS. 

You do NOT understand how fucking sick, and miserable, you can get with it. You could not imagine the things it will do to your body. You cannot fathom the fucked up diseases and illnesses you'll get. Doctors won't be able to help you either because its fucking 2020 and they aren't familiar with assisting patients with extremely high viral loads and low CD4 counts. 

Of course doctors are concerned with your welfare, and the public health. Damage control? Zero cases? Why the hell would a doctor go into treating infectious diseases if not to stop the spread of them? 

Oh my god their nefarious agenda of... not letting people die of treatable illnesses. Better watch out! They're getting rich off of the backs of.... nothing... because infectious disease doctors don't make the kind of money any of their colleagues do. What are you even implying? 

Get tested. Take your fucking meds. Or enjoy dying of a painful rare form of cancer no ones seen since the AIDS crisis and getting the Darwin Award you deserve. 

 

It's fucking 2021, and your level of ignorance is astonishing, but expected when viewed in context of the nearly 50% US population who have alternate facts while craving to be in control of society's future. There's no excuse or justification for not knowing the truth and not presenting false information as truth or attempting to control manipulate people through fear and lies.

 

Obviously you don't have personal or professional experience taking the STILL HIGHLY TOXIC PRESCRIPTIONS used to minimize the complete annihilation of the human body by the HIV fighting for dominance inside it!

 

One can have an informed baseline related to how effective or ineffective HIV medications will be at controlling the virus and the prevalence of side effects based upon the strain of HIV acquired and other personal markersof the patient and his or her family medical history.

What is truly amazing, is the vast wasteland of knowledge you have expressed in the outlandish and categorically false statements made!  For example, how are you still alive since, according to your logic you shouldn't be if you ever had chicken pox or really any of the common childhood illnesses that previously had no cure or vaccine to reduce it's damage?

Based upon your logic, medical professionals can't know how to treat anything that's not currently happening, especially when we don't have a huge repository of information to reference or learn from! If only there was an internet for medical knowledge and not just this one website!! There will always be someone to provide effective individualized medical care!

 

The disesse progression with or without taking highly toxic drugs, iss uniqueto each perso with general minor overlaps.

 

I'd like to suggest that in the future, if your goal is really just to order somebody to do something because it's what you want them to do or think they should do or you want to document a fantasy, then please just put the disclaimer on there that is your opinion it's your fantasy or you're having a period this month and you're taking it out on others around you.

Whatever it is that's driving you to make completely false and intellectually deficient statements and presenting them as truth or science-based is causing more harm than somebody not seeking antiretroviral medication. The reason being, the person not taking medication is impacting themselves only with the potential of impacting a handful of other people if they're sexually active or in a relationship or whatever.

You propagating inaccurate and harmful statements that are read by thousands is negatively impacting thousands and whoever else you spout off to. So you are having a more damaging impact on society than the person not taking HIV medication.

 

In my opinion!  ☣️😉

 

Do you see how that works because that's my opinion you are causing that damage and I can lay out the logical progression of that damage which I just did but I can still acknowledge that it's my opinion! I will conclude with this the world you described near false narrative he's a fantasy world and one that would be great to live in!

[BootmanLA]

2 hours ago, PlayyTimez said:

I'll wait for you to offer real data instead of conjecture or however method used for this false, misleading opinion.

OK, here's real data:

[think before following links] https://www.ncbi.nlm.nih.gov/pmc/articles/PMC315530/

Per that article (which dates from 2004, thus before MOST of the current HAART regimens were developed, which are-broadly speaking-far less toxic and troublesome than early ones), even then only 25% of people failed to stay on HAART and achieve undetectability, and only SOME of those were due to the side effects. (Others dropped out because either their case was too advanced and they failed to achieve VL reduction, or because they had trouble adhering to the regimen for taking the medication.

We're almost 20 years past that, with much better options, medication-wise. New innovations in treatment come out every year, and we know more and more about which combinations of medicines in the treatment are problematic for particular things, like kidney function.

2 hours ago, PlayyTimez said:

I speak as someone with experience from personal diagnosis in 2004, and knowing a number of other long-term survivors and newly diagnosed from around the globe!

There is a phrase in the scientific community with which you should become familiar. It is " The plural of anecdote is not 'data'." Even with the study from 2004, 75% of people receiving treatment didn't have side effects (and I'd call that the vast majority), and the treatments have dramatically improved since then. So no, I'm not backing down from my statement that most people don't experience major side effects.

You had a bad experience after diagnosis and initial treatment? Sorry about that. So did I. My doctor, who was quite properly monitoring everything in my system, having established a baseline for kidney function, blood sugar, blood pressure, cholesterol, and all that stuff when I was diagnosed, early on noticed an issue with an apparent shift in my kidneys and changed my medication immediately to a newer med that didn't impact kidney function - and mine returned to its previous range very quickly. When my blood sugar got out of control (a dietary issue, not a problem with the HIV meds), he consulted with the renal specialist to make sure any diabetes medication he put me on wouldn't bring back the kidney issues. That's how modern medicine is supposed to work.

As for the rest of your garbage take on "everyone's experience is completely different from everyone else's" - the science speaks for itself.  I frankly don't care whether you take meds or not - if you'd rather die from HIV/AIDS than prolong your life with medication, that's your choice to make. I just will continue to object to people spouting misinformation that somehow HIV treatment is toxic and worse than the disease. Because the jury is in on that one, and it's not even close.

[AirmaxUK]

36 minutes ago, BootmanLA said:

The plural of anecdote is not 'data'

That's the first time I've heard that saying.  I hope you don't mind, but I am going to steal it and use it! So often in my working life I get people who think they can challenge data with some weird anecdote. The issue usually is that it is very hard for them to let go of their belief/anecdote whatever data you present.   

[BootmanLA]

41 minutes ago, AirmaxAndy said:

That's the first time I've heard that saying.  I hope you don't mind, but I am going to steal it and use it! So often in my working life I get people who think they can challenge data with some weird anecdote. The issue usually is that it is very hard for them to let go of their belief/anecdote whatever data you present.   

I didn't originate it, so I have no claim to it whatsoever! I think - as you apparently do - that it's a very useful reminder that this one incident or these couple of things I saw are not the equivalent of a rigorous study.

[NEDenver]

Statistics is hard.  I run into issues with people not understanding outliers constantly.  Just because this one data point is anomalous to the population doesn’t make it overly important in describing the trends of the set.

I don’t blame people for trying to put importance on their experience, but it doesn’t change the overall picture.  In the case of HIV, evidence-based medicine says go on meds as soon as possible.  I’m sorry the one poster had a bad experience.  I’ve had 2 fairly minor issues with my medication so my doc switched things out.  And I’m still undetectable which is my goal because I’m not an adrenaline junkie looking to play chicken with a deadly virus, and I’m not in a death cult.

[Pozpunk]

Mine is giving me an attitude, thinks I’m crazy.

[rockhard801]

My doctor has been pretty reasonable with me.  When I saw him the first time after I tested poz he discussed treatment options with me.  I have my blood work done regularly and when I see him he politely reminds me of the benefits of getting on meds. My doctor knows that I am in a relationship and that my partner is also poz and not on meds.  For the time being I am watching my CD4 when it goes below 300 then I will start.