Regulars: Letters

A response to Caroline Guinness-McGann’s column in the December issue:

Dear Caroline,
I have just finished reading your article ‘A Missed Opportunity’ about Stephen Fry’s documentary ‘HIV & Me’ in Decembers’ Positive Nation, and I was sad that you though it was a damaging and stupid programme. I was very surprised at it did not seem that we had been watching the same programme.

As a white, middle aged woman, I took part in this programme because I really wanted to convey the message that it isn’t just the so called stereotypical groups who are at risk of contracting HIV - gay men, black Africans and people who inject drugs - but that this virus can, and does affect us all. I sincerely believe that the programme did go a long way in conveying the diversity that exists in the ‘world’ of HIV in Britain today. The people who were brave enough to be interviewed, despite it often being an incredibly difficult thing for many people to do, I feel should be made to feel good about doing so. If they read your article and feel they were wrong in taking part, I feel it is a hugely retrogressive step.

When my husband died of AIDS in 1996, I was already in my late 40’s and one of my points in the programme was that it is often hard enough to find a good man at that age, without factoring in the ‘oh and by the way, I have the HIV virus’. HIV can be a very sad and lonely thing and can have an enormous impact on ones financial stability as well. To come to a new country, give up all that is familiar and start again, is so difficult at the best of times. To do it while living with HIV can be devastating. Many of us do not know anyone when we first arrive, and we find HIV to be not just a medical virus, but a social, economic and political one as well. Very often we are battling to feed and clothe our families, find decent living accommodation and get our children settled - so HIV often has to wait - and when we have the time to address it, it is often too late to start thinking about relationships.

I suppose living with this virus can be very different when one is surrounded by family and friends for love and support (not the case for many of us) but I notice that even you questioned whether being out about your HIV status had a bearing on the amount of work Mark has been offered (and isn’t that the kind of ridiculous bigotry those of us, who like you speak out, are trying to change?).

I also query whether Stephen called the young girl born with HIV ‘the only intelligent person’ he had spoken to. I think what he said was that she was one of the wisest as well as one of the youngest people he had spoken to - not the same thing at all.

I volunteer for an HIV organisation BODY & SOUL and I have been speaking out about living with HIV for 10 years now. I speak at schools all over the UK, about living with HIV, why the stigma that still surrounds this virus is wrong and why it is necessary for people to take responsibility for their sexual health - that it isn’t just the responsibility of people living with this virus to protect those fortunate enough not to be HIV+. I do this work because I am not in any of the stereotypical ‘at risk groups’, and my presentations do have a huge impact, That is why I agreed to do Stephen’s programme - (believe me, getting my face onto high definition TV with my wrinkles wouldn’t do it for me otherwise) and from many of the comments I received it went some way to showing that.

Of course any programme about HIV is going to be controversial, and I believe it is a good thing if it starts dialogue. I, for instance, have so much I would love to talk to you about (dating tips not necessarily included!!)
Regards,
Amy

Sir/Madam,
Thanks for adding me to your postal list. I received my copy of your December Magazine today.

The article by Caroline Guinness-McGann was well written and I found myself agreeing with every word. As a patient at the Chelsea & Westminster and given the information sheet and request for participation generated by the BBC for this program I was tickled by her reference to Mark Nelson who is surely one of the best HIV practitioners, globally. I note that Clint Walters article also deals with issues of disclosure not unrelated.

Glad to have you back in my post box!
Thanks to you all.
John

A letter from India...

Dear Positive Nation
From last Dec.’07 I go to different state of India and visit HIV/AIDS care home and de-addiction centre. I reach Bangalore on 13th Jan ‘08. You know what I find in my mail box? Positive Nation mag. Thank you so much for sending me this wonderful mag. I pray that this mag will run smoothly and not stop like before. Actually, it’s a blessing. If need be I’ll be very happy to assist you (news item/article). HIV coach/Life coach by Andy Hamilton is great.
From, Bojo Jam Paite.

Unfortuanately we only have space to print some of the letters we receive. For more letters and replies go to our website
positivenation.co.uk and click regulars.

Dear Positive Nation
Hi, I am sending you this e mail because to be honest I just do not know who else I can turn to for advice on what I feel is an extremely important issue.

My boyfriend Jason and I are both HIV positive. Jason has lived with the virus for some 22 years but I was only diagnosed last year.
Although Jason lives in North Wales my consultant at the Lawson Unit in Brighton where I live said Jason could transfer his HIV support down to Brighton so we both had the same consultant.

In September Jason had his last lot of blood tests done at a hospital in North Wales and his cd4 result came back at 180. His consultant was very concerned and advised Jason to seriously consider going onto combination therapy but for personal reasons Jason declined.
About 3 weeks later when Jason came to the specialist unit with me they did a complete blood screening and his cd 4 came back at 280. Yeah, we were really pleased but also confused as to how it could have gone up by about 100 in only a few weeks even though we fully understand that cd 4 results do fluctuate. Even the consultant was surprised though and asked Jason to have another cd4 test and this one came back just slightly lower at 274 so were are far more confident with the Brighton results compared to the Bangor hospital result.

Jason however spoke to Doctor Jackson, the senior HIV consultant at the hospital in North Wales, about the difference in his results and he was told that as different machines for testing cd4 results are calibrated differently this was the reason.

We can’t believe this as the cd4 result is a vital indicator to the doctor as to whether the patient starts combination therapy.

I have written to THT about this but they have not got back to me, Jason has spoken to a THT councillor, he said he was not aware of this issue and to put it very bluntly he was not at all interested so i am contacting yourselves hoping you can please help me?????
We find it totally unbelievable that all cd4 blood test machines are not calibrated to the same standard.??? I mean if you have your temperature, blood pressure or weight taken it would be the same wherever you had it done.

PLEASE PLEASE PLEASE can you offer us some advice please, my boyfriend Jason means everything to me and obviously i want the best support for him so any advice you can offer me would be really appreciated. Thank you.
Kind Regards, Matt

Dear Matt,
As far as I can see, there are a number of different testing kits available, made by different companies. Fine - if you stay in one hospital and they don’t change test kits, then the results will always be comparable.

However, a newer faster cheaper test kit has been evaluated (TRAX) against conventional test methods and only found to be within 70% agreement with other test types. Again that is fine if that is what you are always using and always comparing.

CD4 counts will always vary, higher in the evening than in the morning, higher after exercise, lower during an illness like a cold or flu. So a jump or drop of 100 is not in itself a big deal unless it is part of a continued progression up or down.

BHIVA are just about to issue revised guidelines on treatment and when to start, they will be shifting the bar up to 350 CD4 cells based on scientific proof that starting before the count drops below 350 (by whichever means you are measuring it) is much better than waiting for it to drop below 200 which is the current threshold on paper.
Some doctors are more in touch with what is going on and more up to date. Others, particularly those in small places and with small numbers of patients, don’t always produce the same good outcomes as the larger hospitals who see loads of patients.

If these guys are merely using calibration and differences between test results as a reason not to start treatment, personally I would say it is a foolhardy approach. 350 is the new threshold, starting prior to that will prevent the kind of mishaps that have been recorded with patients who laid off until they got near or below 200.

Treatment works. Delaying treatment makes you vulnerable to other things, even after you start treatment, delaying makes treatment less likely to be effective, and could kill you.

The best support for Jason would be to persuade him to start treatment as soon as possible, to help him do that and help him keep doing that. He has to want to do it because once he starts he can’t stop, it has to be kept up. Latest treatment advances mean potentially less side effects than years ago, potentially taking one or two tablets once at day - just how difficult is that compared to a spell in intensive care?

Positive Nation team

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