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Author Topic: Advice needed please.  (Read 1221 times)

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Offline remo85

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Advice needed please.
« on: April 05, 2022, 09:20:28 pm »
Hi.

I just got a call today from my med provider saying Atripla is no longer going to be distributed in my country. It's the medication I've been on since I first started taking any 6+ years ago and it's been pretty ok.

I'd rather not change my meds but that's basically an issue only in my head from what I understand. I could be doing perfectly OK under another generic type of drug.

My issue is Atripla was over the counter but I'll have to go on social security to access the new drug and in my country many times there are shortages of meds for months when the government is involved.  This has been going on for years without people addressing it due to the fact that there are only about 10k+ documented cases in the entire country and most are uneducated people. Many natives. People who often don't know their rights or don't complain. And they simply die.

I've been very careful about taking my meds and having a healthy lifestyle to compensate for the illness but I honestly cannot deal with the mental stress of having no consistency in my treatment. Anxiety runs in my family and so does addiction and I'm about to go back to my old lifestyle out of pure stress. Not only that but the healthcare workers who work for the government are completely useless. They scare people. The first week of my diagnosis I left there being told that if I had Atripla with water I would die. If I ate anything along with it I would die. If I didn't take the meds at the exact time every day I would die. I'm not exaggerating. That's what they told me. All the nurses. They believe the only way people will take it seriously is by scaring them to death.

Now that I went back after having been unemployed for 2 years (because I can't be in the system and get benefits if I'm unemployed) the nurse literally told me they shouldn't treat me because ''people like me'' skip their appointments and when they come back they're most of the time ''near-death'', they looked for it and they ''want us to dave them but it's too late''. I didn't skip anything. I kept buying $100 Atripla bottles for years, and never skipped a day but I wasn't able to be treated at their government clinics because of my being unemployed. She obviously didn't care.
That's the type of psychological institutionalized abuse I have to endure here. Call it trivial or say I can pay no heed, but it comes at a toll. Mental toll. On top of my anxiety, or not having anyone to be with me through this journey cause I can't share my status with anyone. It's a mess.

My point is, and I don't remember if I've asked this before... I need to leave. I don't care what I have to do for a living or anything. There has to be a way where I can get help moving abroad due to the systemic abuse of HIV-infected people here.
I guess my question is, is there really a way for me to apply for some migration status that can help me? I'm done with this. I can't live a normal life over here. And I know I can get on a plane and land anywhere, be illegal and probably get the meds but I've done that before and it's not sustainable. I know I'll be back on drugs and alcohol if I have to go back to stealing food cause there are no jobs for undocumented people. And I don't want to take any native's place. I want a chance to live with this in peace.

Any info is appreciated, please. And thanks.


PD

I've had very kind people here give me advice and it helps but I don't find what I'm looking for, I've rad it exists and I would like to know if it's possible in any country. If it's not then I'll just find a way to do something about his.
« Last Edit: April 05, 2022, 09:26:13 pm by remo85 »

Offline Jim Allen

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Re: Advice needed please.
« Reply #1 on: April 06, 2022, 05:21:44 am »
Hiya.

There is a lot in your post and after work today ill make some time to fully digest it and reply.

Just wanted to let you know that you are not alone.

Best, Jim.
HIV 101 - Everything you need to know
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Offline remo85

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Re: Advice needed please.
« Reply #2 on: April 06, 2022, 11:59:04 am »
Hi Jim! 70 reads and only one reply but as always you're very kind and anything you bring my way is appreciated.

I forgot to mention that the clinic hasn't had the ''reactive''(they call that ''reactivo'' in Spanish) to be able to conduct the exams and tell me my cd4 and viral load for a long time now. So I'm completely blind, forcefully switching meds without even needing it or knowing my real status. If I go private, only the exam is about $700 which is a month's salary for many and the country's  minimum wage.

For the life of me, I do not understand how this is not patient abuse and discrimination and how come there's no higher international authority on the matter to help people like me. It doesn't make sense what's happening down here. It's detrimental to my physical health and mental. It's to all of us with the condition down here not just me. I'm just another random guy...

And I know how I come off cause I've been told, but no. I'm not a drama queen and I'm not exaggerating. Neither am I a hypochondriac. I believe I have a real concern about a real issue and nowhere to resort to except POZ which has been incredibly helpful in supporting me but beyond amazing support, it's not really giving me a tangible solution and it doesn't have to (I probably can't ask for more help than what you've given me obviously).

I'm strong, I've lived with this alone, I can handle stuff. But this is inhumane treatment and I don't want this absurdity be the center point of my life. Worrying about my treatment getting all messed up. 


*I just need info from someone who's knowledgeable enough on the subject to tell me if there's something I can do to get out of here. I'll do the rest.* 
« Last Edit: April 06, 2022, 12:15:09 pm by remo85 »

Offline zach

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Re: Advice needed please.
« Reply #3 on: April 06, 2022, 01:00:54 pm »
Remo, this is one of those posts that's hard to respond to. I read your original post when it was new. Avoided it like a hot fire because I've been in your place, and don't know if did any better coping

Most of us have had your same doubts. For me, how can I give constructive advice about the same thing I struggle with? All I can say is, I feel you man, because I've been there.

Atripla? Jeez, is that shit still around?! So many little red flags in your post. It's not a good place to remember being. Have you ever tried another med without sustiva? Something is wrong with that med. Yes atripla works, but the psychological effects are there, they are real, and we can't see them in the mirror when we're in the midst of it. Don't ignore the boiling frog, these thoughts you're having, they went away for me when I got off atripla

Moving... There isn't a day that goes by I don't think about moving to Thailand. I wish I'd never gone, wish I never fell in love with it, wish I'd never found out how easy medical care is for us there. At my lowest times, it's the only answer I can see sometimes. I know on a rational level that is fallacy.

For the first time in my life, I could actually pull it off, afford it, and meet all the visa qualifications. Makes it hard to reason my way out of doing it.

I truly don't know if it's fantastic grandiose thinking, or a real possibilty.

But I keep subconsciously planning for it.

A part of me thinks I shouldn't be allowed to make such big decisions in life anymore.

Offline remo85

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Re: Advice needed please.
« Reply #4 on: April 06, 2022, 01:59:43 pm »
Somewhat glad to hear I'm not alone although both situations are rough.

I lived in southeast Asia for some months right before the diagnosis. Had I known what you say, I probably could've considered staying (although I was a fish out of the water over there, not sure it's my place given the culture is so different). I get the moving thing is hard. But if it's your place, I'd say go.

As much as I'm a 6foot tall bearded man who at first sight looks like could take on the world carefree, guess what? I sometimes can't. And I've noticed people think you just have to ''be a man'' and pull your bootstraps. Truth is...I have no clue what to do. I'm permanently looking for places, permanently a flight tab open on my browser looking for deals, researching and I can't find anything.

They tell us ''ask for help'' and here I am. I can't get help from my country so I'm looking elsewhere. NGO's, organizations, etc. Nothing.

Thanks for the Atripla advice also. I had never gotten that info (or at least I don't recall.. probably Jim did...not sure) but either way, it's the best we have meds wise.
Besides what it's getting replaced for is its generic version (I assume). Same components from what the pharmacist told me(they have no clue). And since I'm a lifelong depression sufferer it's hard for me to know if it's a depressive phase. I highly doubt it though. I've been clinically depressed before HIV and this is not it.
I just feel it's not right that I have to worry about not having access to medication, exams, and all that stuff when I'm trying my absolute best.

At the end of the day, I'm not asking for handouts, I'm asking for info. I know people from countries like Brazil who have been able to apply to go elsewhere based on almost the exact same issues. And funny thing is they refuse to share what they did to get there. Literally. Not really what I call a ''community''.... But that's me.
And this is my home country. Here's where my family and friends are but if I have to put my priorities straight, I choose my health.

It's all just hard to tackle as you say. But knowledge is power, isn't it? If I have none I'm 100% lost.
« Last Edit: April 06, 2022, 02:22:01 pm by remo85 »

Offline Jim Allen

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Re: Advice needed please.
« Reply #5 on: April 06, 2022, 02:38:19 pm »
Just finished my shift and my eyes are closing even if I don't want them to.

Read what Zach posted but wanted to say I have not forgotten you and will post after I get a few hours' nap that I need to recover.
HIV 101 - Everything you need to know
HIV 101
Read more about Testing here:
HIV Testing
Read about Treatment-as-Prevention (TasP) here:
HIV TasP
You can read about HIV prevention here:
HIV prevention
Read about PEP and PrEP here
PEP and PrEP

Offline remo85

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Re: Advice needed please.
« Reply #6 on: April 06, 2022, 02:47:24 pm »
Sure Jim! thanks. No rush. U the best.

Offline Jim Allen

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Re: Advice needed please.
« Reply #7 on: April 06, 2022, 07:49:19 pm »
Hiya,

I know we have spoken before over zoom about some of the items mentioned in your post.

As Zach said, it's a tricky topic and to be honest, I don't have the answers. I have my demons, like alcohol. All I can tell you about that is it is not the solution to your problems, but you already know that as well as I do.

Atripla & depression ... So Atripla is solid in terms of suppressing HIV. However, mental health side effects can be a real issue, although I am aware that you don't have many options available.

Understand that moving country could help with some issues. However, realistically, even if you did, it will not resolve all your problems and bring its challenges. Keep in mind that HIV discrimination and crappy nurses can be found just about everywhere in more or less severity.

If you have your heart set on moving, then do that. List out places that you can go to and are allowed to work or at least can more easily get work permits. Most countries have this information online and narrow down the list by crossing off those who don't like people living with HIV. https://www.hivtravel.org/ Most nations will allow people to bring in a limited supply of medications, so at least you don't need to obtain HIV meds when first arriving.

I wish I could provide you with more practical advice, but do know that you are not alone, and we are here if you want to talk.
HIV 101 - Everything you need to know
HIV 101
Read more about Testing here:
HIV Testing
Read about Treatment-as-Prevention (TasP) here:
HIV TasP
You can read about HIV prevention here:
HIV prevention
Read about PEP and PrEP here
PEP and PrEP

Offline remo85

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  • Posts: 47
Re: Advice needed please.
« Reply #8 on: April 06, 2022, 08:49:16 pm »
Sure!
Nurses and Drs can be horrible anywhere but that's the least of my problems. I was dealing with their BS a good 2-3 years into my diagnosis until I became unemployed. And those are IMO the scariest times. Then I found you all and got proper info that wasn't too fatalist.
It's basically all the rest. Although I must admit I've lived some other places and trust me, over here the healthcare system is not known for caring for patients as a whole.

On the other hand, what you say is 100% true. I'm sure I'll drag my stuff with me. 100%. I'm aware. But the importance of belonging and having decent treatment (medication-wise, not just humane treatment) is important. We go months with medication shortages here and people end up ill. I'd rather take my mental issues with me than stay with them on top of the HIV worry.

I'm going to take a deep look at that website you sent Jim, thanks. Really appreciate it.

Either way, if anyone has any other info... It's welcome.
Thank you all.

 


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