Tuesday, 22 April 2008

Stigma, HIV and cervical cancer

I have said this to a few people today in person and in email - so I thought I may as well write this here!

As for me it just proves how 'random' and unjustified the stigma against HIV is - and confirms to me how much this stigma about HIV HAS to stop

It really puzzles me that another, most often sexually transmitted disease - cervical cancer - i.e the more common type of cervical cancer - is not stigmatized while HIV and AIDs is??

Yet Cervical cancer is almost exclusively acquired by catching the virus HPV through sex with men !!!!!!

Yet HPV is not stigmatized like HIV in the same way at all!!.

Just as catching the HIV virus can lead to AIDs if not caught early and treated early, so can HPV lead to cervical cancer and this can often be fatal too -especially if not caught early!!

If you do not acquire HPV- which is exclusively acquired through sex with a male partner - you simply do not ever develop the most common type of cervical cancer ( the other is rare) . And exactly like HIV the chances of getting HPV is higher if you:

have sex at an early age,
have many sexual partners
have a partner who has had many sex partners
have sex with uncircumcised males
( Assumes your sexual partners are men as sex with women carries little if no risk of HPV)


If you are a woman this is exactly the same for HIV too!!
Yet no one stigmatizes a woman with cervical cancer

In fact far from it !!

They have been giving women cervical smears for years just in their own doctors surgery for cancerous changes caused by the HPV virus and they have now rolled out a program of immunization in Britain against the HPV virus for girls between 12 - 13 before they are sexually active - in recognition that they only get HPV from sexual activity!! And to try to stop women getting it at all

( I understand you can not immunize against HIV, but you could test routinely so that all people with HIV got treatment early as possible - as early treatment vastly increases your chances of a 'normal' lifespan)

To me it does not make any sense!!I want to make HIV as little stigmatized as cervical cancer!! And improve the recognition and treatment

Ironically I do not have HPV!! I have HIV but not HPV- So I will never get the common cervical cancer!!! But yes as I did get HIV, I could get AIDs

But if I had cervical cancer I would know that I would get nothing but sympathy from everyone and would not fear telling anyone that I have cervical cancer

( or even a bad smear test result, and a bad smear test result means that I have caught HPV though my sexual activity, but there is no stigma in this!!)

Yet if I get AIDs, I can not be so certain that I will not face stigma and prejudice!!!!

Yet the two are 'acquired' in EXACTLY the same way - there are far more with HPV than with HIV and actually cervical cancer, even in its late stages is a lot more 'curable ' than AIDs

Just a thought!!!!!

I am sure this has occurred to others - but it only occurred to me the last couple of days as ironically I found the results of my last cervical smear - which was of course clear as it always has been all my life!

As I have simply been lucky enough not to have been exposed to the HPV virus. It could of happened just as it has happened to many women, but it did not happen to me !!

But HIV did happen to me, I was simply not 'lucky' with HIV !!



Anonymous said...

As a cervical caancer sufferer I disagree. We also face societies ignorance and stigma attached to the 'sexually transmitted' cancer- although full intercourse does not have to take place; to contract hpv just skin to skin contact is sometimes all it takes.
Later stages of cervical cancer are treatable yes, but not unless you have had your uterus, cervix and upper part of the vagina removed. Some ladies also have the bowel and bladder removed, and lets not forget the chemo and radiotherapy treatment involved.
I'm always havng to make excuses for my cancer, only ever had 2 partners etc etc all smears came back clear too.....
The reason I'm reading your blog is because I googled 'cervical cancer devon' as was hoping to find a support group locally.
I don't intend to offend, but have been left quite upset by your niave comments, and couldn't pass through without putting things straight.


Veritee said...

Dear Rainbow

Dear Rainbow

You may not read his but I hope you do.

I am very sorry if my words distressed you, and of course I acknowledge the distress and suffering you and all others who have had or do have cervical cancer go through.

However my blog entry needs to be put in context, which is - it is my private blog to write about my own journey through HIV and when I wrote this in April I was struggling with the shock of having only been diagnosed with HIV in January and at a point when I was already unwell and needed to start medication.

And was also struggling with the stigma associated with HIV. And this stigma was not mostly about public perceptions but the stigma that exists about HIV in the medical profession whereby the services that are available to detect other STDs such as HVP are firmly in place as a matter of routine for all women, but that HIV is something that their is no routine testing for and is not regarded by the medical profession as something ALL women should be tested for.

As it is perceived in the UK that you only need such a test if you come into a 'risk group' for HIV.
My point was that while may, but only may be certain lifestyle choices – or just where/what country you reside – that can increase the possibility of being exposed to HIV ( and this is the same for HVP) there is no definitive 'risk group for HIV so all should be screened. And in my opinion it is institutionalised stigma about HIV that means that we do not have routine screening for all, for HIV in the UK.

I may be wrong but this is my opinion based on my experiences so far. I am happy to learn otherwise as I go along.

All women can get HIV just as all women can potentially get HVP and the health consequences of that. So to me it is institutionalised ( NHS) discrimination that HIV testing is only seen as necessary if you are perceived to lead certain lifestyles

My blog is my own personal reactions and emotions re my own personal experience and as you know suffering any life changing illness is a journey in which your emotions, feelings and opinions swing and change daily and at times can be quite extreme.

I have no wish however to upset or distress anyone I just need a place to document my thoughts as they happen.

In my blog I am talking about my own distress and experience and not trying to minimise others, especially those suffering a different condition that I have no direct experience of.

When I compared stigma and discrimination between HIV and HVP I was not talking about the direct or internalised experience of stigma and discrimination sufferers feel when they have an illness of condition, I was making a point about the far better availability of routine testing for HVP – smear tests – than HIV. And in my opinion this is because HIV stigma and discrimination is more institutionalised than with HVP.

I also understand that cervical cancer/gyni will carry personal stigma and discrimination for the sufferer, but I do feel that there is a difference in the nature of that discrimination.

At my age I have had at least two close friends go through cervical cancer and another ovarian cancer and while they also suffered the discrimination stigma, humiliation and shame you describe, no one I have met with this has had the situation whereby people do not want to share a ( washed) cup or toilet with you because you have I, or are scared to help you if you injure yourself or have had the assumption put on them that they only have cervical or other gyni cancers because they have ‘brought it on themselves’ by leading risky lifestyles of being promiscuous or a drug user or they suffer it because of their risky unsafe sexual activities of which they had a choice not to do.

With HIV you do get theses assumptions and so the nature of the stigma is different as far as I can see in my own experience of HIV.

But if this is wrong I am very happy to talk to you if you wish to get back to me and an happy to learn and be corrected

If you have a blog or a website about your cancer experience I will also be only too happy to read it and also good luck with your endeavours to find a support group in your area. I am sorry that you do not have the support you need.

I have had some contact with a support group for this here in Cornwall and have done a talk for then on HVP and HIV and cervical cancer.

Perhaps you could contact this support group 'Pants to see if they know of any other similar group in your area - there website is here: http://www.pantsmatters.org.uk

You could also try this site: http://www.pants.nhs.uk/ they may also know of support groups for cervical cancer sufferers.

I also assure you that my point was not at all/ in any way to the minimize the consequences and trauma of cervical cancer for sufferes.

I am very sorry that it read that way and upset you.

I am well aware of the distress and trauma of this due to my own friends’ experience and all gyni cancers, nor was I trying to compare the extent of the suffering between those women who have cervical cancer with women who have HIVor make assumptions that either is worse to have than another.

My point was about the stigma that in my personal experience since being diagnosed HIV carried as opposed to cervical cancer which is also in at least 70% of cased due to a Sexually transmitted Virus, just as HIV is.

They both carry stigma and I am sorry for putting my point about the stigma HIV carries so strongly as to imply there is no stigma associated with HVP and gyni cancers at all. I probably went over the top on this in order to make my point – please forgive this but I wrote it when upset and distresses, which is how I write all my blog entries as my blog is about my own personal distress

I do however feel there is less institutionalized stigma and discrimination for HVP in that there is at least routine testing for HVP which most woman are happy to have i.e go for a regular smear test, without feeling that they are being singled out and judged to be leading an irresponsible or 'risky' lifestyle.

And I can only talk about my own experience and that of my friends and I personally have never experienced any stigma in going for my own routine smear tests, nor have anyone I know, but I experienced this just asking to have a HIV test.....

So this blog is about my own experience of HIV as it has been for me. NOT anyone else’s experience.

All blogs are about peoples own experiences - they are web logs of your own personal experience and should not be read as if what is portrayed applies to all or are facts

However I did and do use fact to illustrate my points and when I use facts I make sure that they are sourced from reliable organisations, and backed up the information by including the web site address.

I got my facts about HPV and its transmission route from a reliable source on the subjects and statements such as
'higher if you:

have sex at an early age,
have many sexual partners
have a partner who has had many sex partners
have sex with uncircumcised males
( Assumes your sexual partners are men as sex with women carries little if no risk of HPV)' I backed up


I am not at all naive about HVP and cervical and other gyni cancers nor do I feel my comments were at all naive.

I do feel that it is your own distress due to your own suffering that led you to read my own personal story of my own distress and trauma in this light – and I am sorry about your distress and your suffering.

If you read my post again you will see that where I do not cite facts I am expressing my own personal opinion and experience about stigma and HIV ( or this is what I am attempting to do) as opposed to the lack of stigma I have experienced personally myself in going for routine screening for HVP as opposed to HIV and the lack of stigma other women I know feel when they go for a smear test.

Please accept that when I do cite facts and statistics they are accurate in that they come from a reliable source of statistical information – in this case from a large cancer org.

However facts and statistics about any illness or condition are only general and do not account for all who have the conditions circumstances nor the unique personal experiences of those who suffer it.

So I will say again that I am so sorry that reading my blog entry caused you distress and really do hope that you get the support you need, and soon.

But also reading your comment caused me distress that I had been so wrongly understood and he assumption was made by you that I am naive about cervical cancer and/or had quoted factual information that was not so.

In my experience if you are unsupported and feel alone many things that are not intended to can upset you or be seen in a different light than how they were written – which is why we have both upset each other even though we have never met.

I am also unsupported for my HIV as you are for your cervical Cancer experience and facing either without sufficient professional/ emotional, support, peer support, understanding and care is a very hard place to be.

And all I can say is I am sorry we are BOTH in that place

Veritee XX

Veritee said...

I thought it may be relevant to point out that those with HIV are more at risk from the HVP virus

Here is a fact sheet I have used for talks on this

Fact Sheet
• A condom does not protect women against HPV as warts around the genital area may shed virus to skin that is not protected by a condom
• People living with HIV are more likely to contract HPV and to carry multiple HPV strains( subtypes)
• People living with HIV are more likely to have HPV complications
• People living with HIV with low immunity, are less able to fight the HPV virus
• HIV has been linked with abnormal Pap smears and the development of HPV-related disease – especially untreated or uncontrolled HIV
• HIV have been linked to high-grade dysplasia and cervical cancer – especially untreated or uncontrolled HIV
• HIV-positive women may respond poorly to the standard treatment for HPV-related disease and as a result may need multiple treatments using different methods. If HIV is treated this reduces the risk of cancer.

Thus for theses reasons it is VERY important women with HPV get tested for HIV so they do not have undetected HIV and if they have it have HIV monitoring and perhaps treatment as soon as possible

Information from The Body Website: http://www.thebody.com/content/art5108.html and AidsMap: http://www.aidsmap.com/en/news/9F709848-6DC3-4363-A7E0-911581D2B827.asp
HIV and Relationship of HPV to Cervical Dysplasia and Carcinoma
• HIV infection is associated with a very high prevalence of HPV infection. The prevalence of CIN in HIV positive individuals has consistently been approximately 5 times greater than that among matched HIV negative women
• up to 40% of HIV-infected women have dysplastic changes on Pap smears compared with less than 10% of demographically similar HIV-negative women
• All immunosuppressed populations are also at high risk of cervical dysplasia
• immunodeficiency resulting from HIV may allow HPV to flourish due to the inhibition of the body's cell-mediated immunity
• HIV positive women are more likely to have high-grade lesions and present with an advanced stage of invasive cervical cancer
• In HIV-infected patients, CIN and invasive cervical cancers respond poorly to therapy and are associated with an increased incidence of recurrent or persistent disease
• As a result of these observations, cervical cancer has been designated an AIDS-defining illness
• The Centres for Disease Control and Prevention recommended in 1993 that Pap smears be part of the initial medical evaluation of HIV-infected individuals

Information from Medscape http://www.medscape.com/viewarticle/408860_5
A personal view
It is my personal opinion that ALL women in the UK, regardless of their perceived risk for HIV should be offered routine HIV testing as well as routing HPV testing and pap smears.

As the risk of having undetected HIV along with HPV are too great to risk. The risks of developing other cancers, especially cervical cancer, are greater if you are HIV positive and untreated.

This is my view however routine testing for HIV is not supported as yet by the NHS nor many HIV activist groups and organisations.

As a woman who did not feel was at any risk for HIV and whose HIV was undetected for some years I feel that NOT to test all women for HIV has to be putting women’s lives at risk

Veritee 07/01/2009