HIV AND ME ON BBC2 (UK)

[newbie76]

Maybe I used the wrong phrase Newbie, bit if I did I still can’t think of a better one.

I don’t see that getting better acquainted with the facts about your disease and treatment is in any way negative, even if this means opening your eyes to the possibility that your treatment might not work as well as you’d hoped or that the drugs themselves could cause problems, and that these problems could have serious implications.

I also have to disagree strongly with your assertion that there was nothing in the program about people doing well on meds, the young lady who was born positive, was she not doing well? And what about the lady who was giving the school lectures after being infected by her unfaithful husband, was she also not doing well? Like I said I think that the program was reasonably well balanced, yes it showed some unpleasant aspects but this was balanced by, erm well, the positive.

I think that, as others have said, that this program was not necessarily aimed at us pozzies anyhow but at the general complacency shown by the public at large. You don’t say how old you and your significant other are Newbie but having just taken the time to read through some of your previous posts I gather that you weren’t too aware of what was happening back in the 80’s and are now having to deal with a large amount of unfamiliar information about this strange disease. And that is precisely what this program is highlighting, you and your Bf, as gay guys should have been better informed about HIV and all its risks than the general public. Every gay bar and club that I’ve ever been in has posters and leaflets freely available for anyone to read; how many young guys (or girls) now take the time to acquaint themselves about even the basic facts of the disease and its transmission?

Your Bf might hide in the bedroom crying, if all of this is so new then he must be terrified, you too. But sooner or later you will both have to stop hiding and make decisions which you can only make properly once you have the true facts, warts and all. These decisions, whether about treatment options or lifestyle changes can greatly affect your chances of co-existing happily with your bug, so it’s important that you have a chance to assess ALL the relevant information before making them.

In closing, (I’m even boring myself now), I apologise if I caused you any offence; that was not my intention. If the program and/or my comments has shocked you and opened your eyes to the fact that antiretrovirals are not necessarily a panacea – then I am glad.

By the way please re-read the last paragraph of my first reply.

John.

John,

I find the tone of your post patronising to say the least. I'm not too sure where you have read that my bf and I are "hiding". Also, you say that you have the impression that I wasn't familiar with this disease and that I should be better informed about it.

I have always been very informed about it, but some people perhaps, like to have some hope, and live the rest of what's left with a positive outlook thinking that maybe there's a chance that I might be one of the lucky ones, that perhaps one day someone will find a cure, or at least there will be meds that will keep me alive and well for a long time. This is what helps me getting up every day.

Seeing a guy dying at 40 and another one going blind doesn't give me anything. Yes, HIV is a serious disease, we all know that, now would you care to explain to me exactly in what way seeing how I am going to die can help me? I cannot do anything to get rid of this bug because now it's too late, so I am sorry if I prefer to concentrate on people that are doing well on meds and aspiring at doing as well as them. I admire all the other people on here that don't feel anything by looking at that program, but seeing what disease does (can do) to you scares the shit out of me.

I am 31 and so is my bf. We were both diagnosed less than 6 months ago and it fell on us like a giant stone. The fact that we have managed to carry on with our lives without jumping from the window, the fact that I still haven't missed a dose of my medications, the fact that my health is now improving, the fact that I am making an effort in documenting myself every day and eat the right stuff, for me these are all important achievements and I feel proud of myself for all that I am doing to safeguard my health as much as I can, the last thing I need is some guy off the Internet to tell me that I am hiding and I am not informed. And before patronising people you don't even know you should think twice; I might even know more things that you on HIV but still be scared by it.

Rant over. Apologies to everybody elkse for hijacking the thread with this but I felt like I had to set the record straight.

[vokz]

HIV is a serious disease, we all know that, now would you care to explain to me exactly in what way seeing how I am going to die can help me?

I say again .. it wasn’t meant to help you (or me, or anyone else here).

For weeks the BBC have been running trailers showing Willie on his last legs / wheels telling us that he wouldn’t live to see Christmas - so you MUST have known in advance what you would be faced with.

Why should everything that deals with HIV-AIDS be tailored to please our sensitivities, address our needs and speak to our knowledge levels?

The whole point of the programme is to stop other people ending up in our shoes .. and showing happy people, who are flourishing on meds, to the 25% of kids who think that HIV is just another random curable illness, which is fixed with a free antibiotic from the local GUM clinic, really is not going to do the trick.

It is not that people don’t feel anything watching the programme – it is that they see the greater picture (I hope).

[vokz]

PS: Having seen the second programme already, I urge you not to watch it thinking that it will be all happy-clappy and telling us UK-based pozzers (and potential pozzers) about all the wonderful support services that are available to us; because you wont find it.

The BBC (both radio and television) has plenty of other programming about that in the next few months .. once the shock and awe phase is over and done with

[newbie76]

I say again .. it wasn’t meant to help you (or me, or anyone else here).

For weeks the BBC have been running trailers showing Willie on his last legs / wheels telling us that he wouldn’t live to see Christmas - so you MUST have known in advance what you would be faced with.

Why should everything that deals with HIV-AIDS be tailored to please our sensitivities, address our needs and speak to our knowledge levels?

The whole point of the programme is to stop other people ending up in our shoes .. and showing happy people, who are flourishing on meds, to the 25% of kids who think that HIV is just another random curable illness, which is fixed with a free antibiotic from the local GUM clinic, really is not going to do the trick.

It is not that people don’t feel anything watching the programme – it is that they see the greater picture (I hope).

I don't watch the BBC. I only watched this program because I saw an article about it on the Internet, so I didn't really know what to expect.

I still think that whoever edited the program didn't take into any consideration people that are still coming to terms with the disease. It's a bit like the whole attitude around finding a vaccine rather than a cure, a bit like saying "f*ck the poz guys, they're already sick anyway! Let's concentrate on those that are still negative and try to keep them that way".

I am not saying that they shouldn't have shown the guy dying, I am just saying that perhaps they should have also mentioned that there are people that are doing well on medication and are leading a fullfilling life, for the benefit of those that are perhaps a bit more vulnerable.

[newbie76]

PS: Having seen the second programme already, I urge you not to watch it thinking that it will be all happy-clappy and telling us UK-based pozzers (and potential pozzers) about all the wonderful support services that are available to us; because you wont find it.

The BBC (both radio and television) has plenty of other programming about that in the next few months .. once the shock and awe phase is over and done with

Thank you for the tip... I wasn't going to watch it anyway... the first already ruined my week so I am not going to make the same mistake again!

Out of curiousity, how could you've seen the 2nd one already?!???

[newt]

Vokz, you just popped up in this thread, it would be good to hear you introduce yourself so we can say welcome..and I wanna know how yo got to see pt 2 before us, cos I's away in SA next week n is gonna miss it

Welcome

- matt

[vokz]

I saw preview copies of the shows and some of the other programming last week.

[vokz]

Vokz, you just popped up in this thread, it would be good to hear you introduce yourself so we can say welcome

Matt

Just another random (and far too blunt) Efavirenz f*cked London pozzer of little note who popped by for a look and a break from the same old suspiciously repetitive Worried Well posts over at TheBody.com

Mark

[newt]

Don;t have a problem with blunt.

Shame about the efavirenz head fuck, if they designed that out it would be a very good invention. 

Hope to see you around in other threads.

- matt (brighton) the newt

[vokz]

I don't actually suffer from any of that. I'm one of the lucky ones .. but I do kinda miss my nightly 10PM NHS rush

/ends hijack

[keyite]

I still think that whoever edited the program didn't take into any consideration people that are still coming to terms with the disease. It's a bit like the whole attitude around finding a vaccine rather than a cure, a bit like saying "f*ck the poz guys, they're already sick anyway! Let's concentrate on those that are still negative and try to keep them that way".

Sorry, but I don't see any need to take that into consideration. You'd never get a programme off the ground trying to address every possible viewer. There are other and better sources for the newly diagnosed to come to terms - this website being one of them. As for a vaccine - I hope for the sake of humanity they do find a vaccine, even if they never find a cure. Of course the negative should be kept that way, if it is at all possible - that aspiration isn't some kind of personal slight to me because I happen to be poz.

I am not saying that they shouldn't have shown the guy dying, I am just saying that perhaps they should have also mentioned that there are people that are doing well on medication and are leading a fullfilling life, for the benefit of those that are perhaps a bit more vulnerable.

And they did. The middle-aged lady doing talks to school kids was really inspirational and seemed to be doing fine health-wise - just to pick one.

[komnaes]

I still think that whoever edited the program didn't take into any consideration people that are still coming to terms with the disease. It's a bit like the whole attitude around finding a vaccine rather than a cure, a bit like saying "f*ck the poz guys, they're already sick anyway! Let's concentrate on those that are still negative and try to keep them that way".

Hey Newbie

I am sorry to hear that you feel this way. Maybe because I am still a newly diagnosed, hence the reality hasn't settled in me, or I am more able to detach from it or I have seen worse images of people that I knew and cared about dying of different diseases (well, mostly cancer).

For me, when I watched the scene in the Edinburgh hospice, I actually felt rather warm and happy for the guy that after many years (20 something) of struggling he at the end found a very nice place with caring caregivers to pass away. I WISH I can die in that place. As for the blind guy, yes, it's scary to learn that there are OIs that can cause blindness, but not far from where we live our family know a man, who's in his 40s, turned blind because of diabetes.

Maybe it was the shock of watching those old footages of dying patients, the Edinburgh hospice and then the blind guy so upset you that you didn't notice the positive aspects - toward the end they feature a young teenager who's been HIV all her life, fighting hard to manage her health as well as openly confronting all the discrimination; and then there was this HIV+ older granny type who gave talks to young students about safe sex and discrimination. These to me are people that are confronting their virus head-on, living protective lives and carry on regardless.

These are people that I know I have to look up to in order to manage my disease, and that's what I get from this program.

Shaun

[StrongGuy]

Just finished watching it and thought it was very very well done. Definitely seemed aimed at prevention, education, and waking  people up to the significant prevelance of ignorance and stigma. And to encourage people to get tested.

Also very well balanced.

I found the stories very inspirational - from the guy who lost a lot of his vision (who was a remarkable individual and looked great after all he's been through) to the older mother and Carly living full lives but still dealing with ignorant a-holes.

I also like Fry's methodical, inquisitive approach. It wasn't "in your face" - he just let the stories speak for themslves as he pondered and learned with everyone (though pretty much most of what he covered wasn't anything I hadn't really heard before).

Thanks for posting. We appreciate it.

[newbie76]

Sorry, but I don't see any need to take that into consideration. You'd never get a programme off the ground trying to address every possible viewer. There are other and better sources for the newly diagnosed to come to terms - this website being one of them. As for a vaccine - I hope for the sake of humanity they do find a vaccine, even if they never find a cure. Of course the negative should be kept that way, if it is at all possible - that aspiration isn't some kind of personal slight to me because I happen to be poz.

And they did. The middle-aged lady doing talks to school kids was really inspirational and seemed to be doing fine health-wise - just to pick one.

I am sorry but that makes no sense to me... If they find a cure HIV would become like other STDs such as Clamydia: you take a pill and you're fine, which would save everybody (current neg and poz).

[md]

I am sorry but that makes no sense to me... If they find a cure HIV would become like other STDs such as Clamydia: you take a pill and you're fine, which would save everybody (current neg and poz).

I think it does make sense if you go back and read it more carefully.

keyite didn't say that he didn't want a cure to be found.

He said that "even if they never find a cure" he still hoped that a vaccine would be found.

That seems perfectly reasonable to me.

[keyite]

Yes, md has it right. Vaccine and cure are not mutually exclusive. Because of the nature of the virus it will be very difficult to achieve either. A cure (as in ridding the body of the virus once infected) I personally think will remain a theoretical possibility for many years to come. I can't imagine it will ever become like chlamydia or the other bacterial STDs where you "take a pill and you're fine".

Wishing for and working towards a vaccine, i.e. giving the uninfected immunity to infection, does not to me equate "f*ck the poz guys". Yes, it would mean we would have to manage with the ARVs, which are pretty good and getting better all the time, but more importantly it would mean billions could avoid infection altogether and whole economies in sub-Saharan Africa, and eventually elsewhere too, might avoid collapsing. Unfortunately I think that too lies a long way off.

Doesn't mean I don't hope for either or even both.

[Miss Philicia]

btw, I'm taking the video down from my web site folks.  If you still want to watch it you can find it split into several sections soon on a web site that Shaun/komnaes will tell you about.

I'm afraid of going over my monthly download limit on my .mac account

[vokz]

FYI: It is already on YouTube split into six sections

http://www.youtube.com/results?search_query=hiv+and+me&search=Search

[leatherman]

thanks for links komnaes  I had already read through this interesting thread before sitting down and watching this show this morning (I was too busy wondering what my latest labs were going to show yesterday to care about much else. Luckily the numbers weren't bad  )

Of course, after watching it, I realized this show doesn't have much to do with us - the already infected. This show is clearly aimed to shake up a complacent society. It's the opposite and IMHO more realistic view than of the "hiv-lite" message. Regardless of how wonderful the drugs are, this is a serious deadly disease. If the science surrounding HIV hadn't improved, we'd be living in a time worse than the worse part of the 80s with this epidemic - if we'd even be alive at all today! (My partner died because there was nothing to help him. I started on AZT that seemed more deadly than the disease. Now, I'm still here only because the better meds have kept my VL nearly in check) Truthfully, would any one of us, even the luckier ones taking "a pill a day" and living without any other effects from this disease, really wish this onto anyone?

Many of the original activists who spoke up, warning about this disease, have unfortunately passed away. (Don't I wish I had listened to them?) Then many of us were dealing with our own issues as the meds were being improved, and talk of AIDS faded away. And now the numbers of infected are rising again. Remember the old slogan "Silence = AIDS"? Obviously with less talk about the subject, without keeping it in the public eye, silence does lead to HIV infections.

If I had the chance to talk to Mr. Frye, I'd tell him the same thing I tell several others that I know that lecture about preventing HIV (one whom I consider a friend that I met in these forums):

"Thank you for continuing to warn people about this horrible disease. I'm glad you didn't "sugar coat" the subject too much. If you scared just ONE person away from contracting this disease, you have done a wonderful thing. Thank you."

[md]

Remember the old slogan "Silence = AIDS"?

Actually it was "Silence = Death".

[komnaes]

My links are here.. 

Part 1: http://www.veoh.com/videos/v1263202EHwcRy7Q

Part 2: http://www.veoh.com/videos/v12633527szwnpy8

Part 3: http://www.veoh.com/videos/v1263391zZR5p55W

Part 4: http://www.veoh.com/videos/v1263433fswCD6q7

Shaun

[leatherman]

Actually it was "Silence = Death".

Thanks  , I knew that didn't sound quite right. (I told you that I didn't listen to that message in time.  ) But at that point it time, it pretty much meant the same thing.

[BKNYLivin]

I just watched it online and thought it was quite balanced and I'm sure it will do some good. Even if it makes 10 people think and change their behaviour, that can only be a good thing. I didn't find anything shocking about it - Yes, people are still dying of HIV/AIDS and that's a fact, whether we like it or not. A lot of people seem to think no one dies or really suffers anymore(tell that to the people I see in NYC hospitals and all over this city) and I get so sick of hearing that, so I was glad it was pointed out.
I liked the fact that there was a "mature" heterosexual lady and the teenage girl - just shows you that discrimination is still very much alive, but there are people willing to take a stance. Carly, the teenager, is a brave girl, knowing how cruel kids can be. It's all about making people think............. 
If it makes some of us with HIV a little uncomfortable, I say that's also a good thing - we need to think too, even though this documentary was clearly aimed at the less informed(which might include some of us Living with HIV).