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Author Topic: Too Our sisters - those who can not get the HIV medications we can  (Read 4486 times)

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Offline Veritee

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I love this woman's forum and find it so supportive

but I do  have to ask ?????

We share our concerns , but basically we are the privalaged few

The few in the coluntries who can get good & effective  HIV medicartions

What about all those - and so many children- and our sisters in in Africa, Malaysia, Thailand  and in so many other countries ??
 
Who will - beyond a DOUBT - die of AIDs because they can not get the anti-retrovirals drugs  etc we are just so lucky to be able to  get in the US and the UK etc???? The drugs we so take for granted we can get ?? What can and our we doing to help them ??


We .............I so admit - we are so very lucky - As we can get the HIV meds we need.

 But what makes us me more worthy to live than our sisters that ill or are are dying every single day because they can not get the drugs we so take for granted we can??


For some of us our ARVs might cost money we can not afford but if we live in he US or the UK and some other countries we can get them whatever it costs we pay for them if we have to so they we can stay alive

Maybe someone has asked this before here?
but I have not seen it so I thought I would ask ?

We all here have HIV - and it totally stinks to have HIV, Doesn't it  sisters?

You can make light of it here so as not to upset others who you know are suffering as you all are too

-we wish to support each other so we do not want to point out too bluntly the realities of HIV i.e if you do not get the  AVRs once you need them i.e when you CD4s get too low - you get AIDs and will die !!

My husband got AIDs and got very close to death and was only saved by modern medicine and ARVs available in the UK I have 2 women friends who have lost partners from HIV and a male friend who has lost 2 partners - one only last year due to HIV - so while the meds do protect  they are not a guarantee.

But they do help delay AIDs and for many for over 20 years - perhaps more - so we are so very lucky to have access to them

So however we make light of it an however we cope to live with HIV is totally a very awful thing that none of us meant to acquire - however we acquired it - and  no one should ever underestimate what that really means to each and every one of us, and to underestimate the toil it takes from each and every one of us to live though this .

We may be on HIV meds - but all of us with HIV - if we are honest - we are looking the true reality of our own mortality in the face - We all know that it is only access to ARVs that means we are going to live and many of us will - hopeful -  live  a healthy life and hopefully for many years

But it is only due to the meds we do not have AIDs - Without them many of us here ( including me although only recently diagnosed I and my husband was already very ill)  would not be alive right now

But in so many countries women, and children , they  are just not in our position .

The fact still is are that if you do not have access to ARVs you will eventually get AIDs and die of AIDs

If any one of us did not have access to ARVs we would die within 2 to  10 - and some very lucky ones who somehow had latent HIV for longer may be 10 to 20 years - but without HIV AVRs we all would die in the end   - FACT


HIV is only a treatable and an illness you can live with is you have access to good HIV medication

All of us here on this forum it seems do have this !!

What about those who do not?????  - our sisters and their children are dying
We have to do something how little it is I know it is very little

but I  will do something..and you can all do something

Have members of the Poz Womens forum ever thought of going  to Africa as a group or to other countries where they can not get the meds like we can ?? or campaigning to help.

Maybe you do -already???

 but I do no read about this campaigning  here ......Tell me I am wrong and point me to where this is to  our sisters or even  acknowledges them ??
I was only diagnosed 18 months ago and I may be VERY naive- probably I am

But the way I see it .........................

My situation is not great and I will be the first to ask for your emotional support to cope with how I feel about having to live with HIV in my late 50s

But at least we have the best in terms of meds - yet so many women are dieing worldwide  of HIV - for one reason only - they can NOT get the meds?? Due to financial or political reasons

It is criminal isnt it ??   

Just where I am right now - Maybe just my issue.

May be not where you women on here  are but I was only diagnosed 18 months ago and yes I had AIDs but I got the meds and I lived and I am now healthy

But it has horrified me that I can stay alive due to drugs I can get but thousands of my sisters worldwide can not and they and their children are dieing - each and every day 

Sorry if my issues are so different to others

But it is where I am right now with this .

I am in my 50s - I have had a good life and only got HIV at age 50 - now I am 57

It was awful for me as an individual to find I had HIV#

but I am still alive due to the drugs I can get - I am appalled that so many worldwide with HIV do not get theses drugs  just because they do not live in the country I do
ALL I CAN SAY IS IT IS CRIMINAL

Why should I be able to have a chance to live even when I have HIV and I am in my 50s ans my children are grown up

Yet very young women with small children who depend on them - are dieing - simply because they can not get the HIV drugs I can





I have a blog here, please do not judge me on what I say here- I need to offload and this is where I do it: http://hiv-and-us.blogspot.com/

Offline Veritee

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Re: Too Our sisters - those who can not get the HIV medications we can
« Reply #1 on: November 08, 2009, 05:22:09 AM »
Sorry about the rant above - should not have posted it

SORRY

But I am so very pleased that the US health care reforms have at least passed the first hurdle.

I feel that with this History has happened !
And like he promised- Obama - it seems to me from where I am  ' change has come ' to America


even if this bill gets no further, for me it is History that a US president even cared enough to put his own power and personal ambitions on the line - knowing that due to the changes he is trying to make he may never serve a second term - and is trying with everything he has, while he can, while he has the power to do so, to bring change and for ordinary people  to the US

It may not seem that it matters to someone like me who lives here in the UK where I get free - and excellent - health care and free HIV medications.

But it does

From my little farm in rural Cornwall UK I am on the internet and talk to people all over the world who like me live with HIV and often feel shamed that I moan about my own problems adjusting to having HIV when I am often talking to people who can not even get the medications that I get totally free.

And some - shockingly to me - of those people I talk to even live in the relatively rich country like the US

It shames me that I burden people with my concerns when at least I know I will always get my HIV meds ( without which I would get AIDs and be very ill) with very little effort on my part)

Do you know that here in the UK my medications are posted to me and even the postage is free of charge to me  so that if I do not even feel like making  the trip into my doctors to get my bloods checked my meds still arrive and I get 4 months supply at a time a month ahead so I can not ever run out and will never be caught out without them?

It was therefore a complete shock to me once I found I had HIV to gradually realize that the health care I take so much for granted - that is always free and always the best my country can offer i.e whatever my illness or condition I will always get treated and not just treated but will get the best available in my country and free and as locally as possible   - was/is not available to all who have HIV worldwide.

I did know/realize  that people living in Africa etc  often can not get even basic HIV meds and that this is  shaming to us all .

But even more of a shock to realize that people in the fantastic US - the country that brought us the internet, the country that brought us the TV series's , the films, the technology into our homes that we take for granted and also many of the advances to science including medical science  ........

........That many in the US do not have the basic right to health care that I take totally for granted as my right - something until HIV  I did not really question as our national health service was has been in existence since 1948 before I was born as I was born in 1953!!

It has been totally shocking for me therefore to realize that even in the US some can not even get HIV meds!! And apart form HIV many can not even get basic health care

That many who do get health care and HIV meds   if they can get them - and that some can not - have to struggle to pay for them directly or their health insurance.

This has been a learning curve for someone like me , born after our own system of free heath care for all came in .

Their are faults in our system I agree,  and their will always be fault in any health care system. But any civilized country surely ?  has to have a health care system where people can opt out if they wish and pay for their medical care or get private health insurance  - as many do in the UK  .

But NO ONE - from the very rich to the very poor ever lacks the health care they need

This HAS to be a basic civil right?
Anyway so pleased that the US may now be on the way to granting everyone in the US this basic right

Veritee
I have a blog here, please do not judge me on what I say here- I need to offload and this is where I do it: http://hiv-and-us.blogspot.com/

Online BT65

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Re: Too Our sisters - those who can not get the HIV medications we can
« Reply #2 on: November 08, 2009, 08:29:04 AM »
Veritee, I am totally thrilled that the healthcare bill here in the U.S. has passed the House.  I'm going to phone my senators tomorrow and let them know that they need to vote for it as well. I may have a better chance with one, who is Democrat, but the other one is Republican, so I don't know how far I will get with him.  The Democratic senator is a bit conservative as well, but I'm hoping he'll vote for it. 

I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Offline Veritee

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Re: Too Our sisters - those who can not get the HIV medications we can
« Reply #3 on: November 08, 2009, 10:58:49 AM »
Oh good luck BT with this.

I wish I could vote or do something but living in the UK of course I can not .

But if anyone wants to know what it is like living with  a public health system and how it works and how it feels I would be very happy to explain -  of course any Health system you would have in the states  if this goes through will not be the same as the one we have in the UK ...as yours will have to adapt to the situation you already have there and take account of the private insurance system you currently have .........but I am happy to explan how it works in the UK

and happy to explain the problems too as no system is perfect and their are problems

But we do all get the medications and treatments we need , for HIV and for almost all, if not all, other physical conditions.
I have a blog here, please do not judge me on what I say here- I need to offload and this is where I do it: http://hiv-and-us.blogspot.com/

Offline karry

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  • Posts: 271
Re: Too Our sisters - those who can not get the HIV medications we can
« Reply #4 on: November 09, 2009, 07:05:26 PM »
Hello Veritee,

I read your post with a lot of emotions.....emotions because what you said echoed some of the guilt I have felt since being diagnosed and living in N america when I know my sisters in Africa (and I come from there) have to deal with a lot of things I dont deal with and may never deal with.
..I feel guilty about a lot...

But I want to turn that feeling of guilt into something more productive. I have thought of getting meds that are not needed to send to the hospital in the locality I come from. I have done nothing more past the thinking, but I have to realise this someday soon. Aids orphans are a growing humanitarian crisis where I come from...so much needs to be done.

you can send me a personal message...
xoxoxo
K.

Take it a day at a time....and be positive about it too!

Offline Veritee

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    • Post Natal Illness Support
Re: Too Our sisters - those who can not get the HIV medications we can
« Reply #5 on: November 10, 2009, 02:25:10 PM »
Yes Kerry

You are so right, I feel it personally on a very emotional level that there are women who can not get or afford the meds I am so privileged to have, and so easily. And I guess you are right, a lot of what I feel is guilt.

I am not from Africa like you so I guess it is even more emotive for you than for me.


i think why I am so personally affected by it was when I was first diagnosed I was so alone and so desperate to talk to other women who had HIV.

I found this forum online but I so desperately wanted to talk with women face to face and I could find none as most UK women I know of through the charity I volunteer for in the rural area of the UK I live, do not it want it known they have HIV, not even by another woman living with HIV, so I could find no woman to befriend and talk to face to face in that very crucial and very lonely time after diagnosis.

Then I found Pozfem UK: http://www.poz-fem-uk.org/ which is a UK organization for women living with HIV and they meet throughout the country only about 3 times a year so I had to wait and then travel a long way to meet with them.

But I can honestly say meeting them saved my sanity

Here is me a couple of weeks ago with just a few of those lovely women who keep me sane since I was diagnosed with HIV


And at least half of those women I meet through this group are from Africa - many from Zim some from Rwanda and many other African countries and so many could not  get any HIV meds in Africa which is why they now live in the UK.

But many have left family and friends with HIV in Africa who can not get theses drugs.

I quickly learned how that the drugs which saved my life and will keep saving my life and at first I took for granted I woudl get are not available to many with HIV all over the world and i am determined to try to do something about it in my small way.

By campaigning and speaking out but also what you mention is a very good idea.

We have a scheme here in the UK where we can send drugs we do not need to countries where people can not get them  - perhaps because we have changed medications or we have been given too much - I have loads, enough to last me months and if I run out they will not question it they will just give me more and free

So I will do what you suggest and send those I do not need to those who can not get them.

Thanks

Veritee
I have a blog here, please do not judge me on what I say here- I need to offload and this is where I do it: http://hiv-and-us.blogspot.com/

Offline Ann

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Re: Too Our sisters - those who can not get the HIV medications we can
« Reply #6 on: November 10, 2009, 04:23:47 PM »

We have a scheme here in the UK where we can send drugs we do not need to countries where people can not get them 


Hi Veritee,

Could you go to this thread and tell TabooPrincess about this scheme and how she can get involved? I've done some searching and have come up empty handed. I also sent out a couple emails but haven't gotten any replies yet. Thanks!

Ann
Condoms are a girl's best friend

Condom and Lube Info  



"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

Offline Veritee

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  • Posts: 180
    • Post Natal Illness Support
Re: Too Our sisters - those who can not get the HIV medications we can
« Reply #7 on: November 11, 2009, 03:04:44 AM »
I was told about by a woman who also belongs to Pozfem and I admit I too have not been able to find it online. So I will ask her and let you know
I have a blog here, please do not judge me on what I say here- I need to offload and this is where I do it: http://hiv-and-us.blogspot.com/

Offline TabooPrincess

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  • Posts: 279
Re: Too Our sisters - those who can not get the HIV medications we can
« Reply #8 on: November 11, 2009, 04:59:00 AM »
Thanks for that  Would really like for other women to have the opportunity at least to have a healthy baby.
09/ 2008 - Seroconversion
11/2008 - Tested pos, cd4 640 vl 25400
12/2008 - cd4 794 vl 27798, 35%
03/2009 - cd4 844 vl 68846, 35%
06/2009 - cd4 476 vl 49151, 33% (pregnancy confirmed)
08/2009 - cd4 464 vl 54662, 32%
Started meds for pregnancy (Kaletra, AZT, Viread)
09/2009 - cd4 841 vl 3213, 42%
10/2009 - cd4 860 vl 1088, 41%
11/2009 - cd4 771 vl 563, 38%
12/2009 - cd4 885 vl 151 42%
Discontinued meds after baby born
02/2010 - cd4 841 vl 63781, 38%
05/2010 - cd4 1080 vl 113000, 39%
08/2010 - cd4 770 vl 109242
12/2010 - cd4 642 vl 111000, 34%
06/2011 - cd4 450 vl 222000, 33%
11/2011 - cd4 419 vl 212000, 24%
03/2012 - cd4 280 vl 118000, 26% (repeated Cd4 at 360)
05/2012 -cd4 360 vl 99,190
10/2012 Atripla, cd4 690, vl 80
12/2012 Darunavir, norvir, truvada, Cd4 680, vl u/d
07/2013 cd4 750,ud

Offline karry

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  • Posts: 271
Re: Too Our sisters - those who can not get the HIV medications we can
« Reply #9 on: November 11, 2009, 07:02:48 AM »
Tabooprincess and Veritee!

You rock! The ability to think of others and help others when you are also dealing with HIV is such a positive attitude for the rest of us to follow.

Continue being the wonderful women you are, and the rest of us will follow your steps and I am sure one little step at a time and we will bring a smile, some hope and love into the lives of our sisters less fortunate than us who are living with HIV.

xoxo to you Ladies!
K
Take it a day at a time....and be positive about it too!

Offline alice8

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  • Posts: 1
Re: Too Our sisters - those who can not get the HIV medications we can
« Reply #10 on: December 12, 2009, 01:46:04 PM »
Hiya, I'm new on here...

Not getting HIV treatment in certain countries is very "painful" subject for me.
...I was diagnosed HIV+ while being pregnant with my baby girl, now she is 7weeks old and we are waiting for her blood tests....
We live in England,but my country of origin is Latvia (that's in Europe, for those who don't know)....I came to UK to study and hoped to go back home one day...but i was diagnosed HIV positive and it mean - THERE IS NO GOING HOME FOR ME, because there is no FREE HIV treatment in Latvia!! You even have to pay for your own blood tests etc.
How unfair is that?!
And what I suppose to do living in country that I don't want to be....I don't feel at home here...all my family and friends are back in Latvia....How I suppose to learn to live like this, I am so home sick!!

Offline debsd222

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  • Posts: 69
Re: Too Our sisters - those who can not get the HIV medications we can
« Reply #11 on: December 25, 2009, 07:47:21 PM »
I love this woman's forum and find it so supportive

but I do  have to ask ?????

We share our concerns , but basically we are the privalaged few

The few in the coluntries who can get good & effective  HIV medicartions

What about all those - and so many children- and our sisters in in Africa, Malaysia, Thailand  and in so many other countries ??
 
Who will - beyond a DOUBT - die of AIDs because they can not get the anti-retrovirals drugs  etc we are just so lucky to be able to  get in the US and the UK etc???? The drugs we so take for granted we can get ?? What can and our we doing to help them ??


We .............I so admit - we are so very lucky - As we can get the HIV meds we need.

 But what makes us me more worthy to live than our sisters that ill or are are dying every single day because they can not get the drugs we so take for granted we can??


For some of us our ARVs might cost money we can not afford but if we live in he US or the UK and some other countries we can get them whatever it costs we pay for them if we have to so they we can stay alive

Maybe someone has asked this before here?
but I have not seen it so I thought I would ask ?

We all here have HIV - and it totally stinks to have HIV, Doesn't it  sisters?

You can make light of it here so as not to upset others who you know are suffering as you all are too

-we wish to support each other so we do not want to point out too bluntly the realities of HIV i.e if you do not get the  AVRs once you need them i.e when you CD4s get too low - you get AIDs and will die !!

My husband got AIDs and got very close to death and was only saved by modern medicine and ARVs available in the UK I have 2 women friends who have lost partners from HIV and a male friend who has lost 2 partners - one only last year due to HIV - so while the meds do protect  they are not a guarantee.

But they do help delay AIDs and for many for over 20 years - perhaps more - so we are so very lucky to have access to them

So however we make light of it an however we cope to live with HIV is totally a very awful thing that none of us meant to acquire - however we acquired it - and  no one should ever underestimate what that really means to each and every one of us, and to underestimate the toil it takes from each and every one of us to live though this .

We may be on HIV meds - but all of us with HIV - if we are honest - we are looking the true reality of our own mortality in the face - We all know that it is only access to ARVs that means we are going to live and many of us will - hopeful -  live  a healthy life and hopefully for many years

But it is only due to the meds we do not have AIDs - Without them many of us here ( including me although only recently diagnosed I and my husband was already very ill)  would not be alive right now

But in so many countries women, and children , they  are just not in our position .

The fact still is are that if you do not have access to ARVs you will eventually get AIDs and die of AIDs

If any one of us did not have access to ARVs we would die within 2 to  10 - and some very lucky ones who somehow had latent HIV for longer may be 10 to 20 years - but without HIV AVRs we all would die in the end   - FACT


HIV is only a treatable and an illness you can live with is you have access to good HIV medication

All of us here on this forum it seems do have this !!

What about those who do not?????  - our sisters and their children are dying
We have to do something how little it is I know it is very little

but I  will do something..and you can all do something

Have members of the Poz Womens forum ever thought of going  to Africa as a group or to other countries where they can not get the meds like we can ?? or campaigning to help.

Maybe you do -already???

 but I do no read about this campaigning  here ......Tell me I am wrong and point me to where this is to  our sisters or even  acknowledges them ??
I was only diagnosed 18 months ago and I may be VERY naive- probably I am

But the way I see it .........................

My situation is not great and I will be the first to ask for your emotional support to cope with how I feel about having to live with HIV in my late 50s

But at least we have the best in terms of meds - yet so many women are dieing worldwide  of HIV - for one reason only - they can NOT get the meds?? Due to financial or political reasons

It is criminal isnt it ??   

Just where I am right now - Maybe just my issue.

May be not where you women on here  are but I was only diagnosed 18 months ago and yes I had AIDs but I got the meds and I lived and I am now healthy

But it has horrified me that I can stay alive due to drugs I can get but thousands of my sisters worldwide can not and they and their children are dieing - each and every day 

Sorry if my issues are so different to others

But it is where I am right now with this .

I am in my 50s - I have had a good life and only got HIV at age 50 - now I am 57

It was awful for me as an individual to find I had HIV#

but I am still alive due to the drugs I can get - I am appalled that so many worldwide with HIV do not get theses drugs  just because they do not live in the country I do
ALL I CAN SAY IS IT IS CRIMINAL

Why should I be able to have a chance to live even when I have HIV and I am in my 50s ans my children are grown up

Yet very young women with small children who depend on them - are dieing - simply because they can not get the HIV drugs I can






April 08 3 month bout w/ shingles, ongoing nerve pain
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