From Jaffna to mastectomy. And beyond.

I was staying in a little guest house in Jaffna, the capital of the northerly province of Sri Lanka.  It was June 2008 and the atmosphere was somewhat tense at that time, in the final months of the conflict.  The little guest house was a real haven, and we were well looked after by M, a lively character who managed the place.  She made sure the rooms were clean, and produced beautifully fresh and flavoursome Jaffna cuisine.  Although the curfew did not apply to the early evening (if my memory serves me well), we tended to stay in and chat with fellow guests, usually also from the humanitarian sector.  There were only five rooms, so it really was a small and cosy setting.  One evening we were chatting as usual, and our host was in and out of the conversation as she worked away. Now, again if memory serves me right, the conversation took an unexpected turn, along these lines when our host asked:

“Have you heard of Angelina Jolie?”

The general response was one of confusion, and silence followed by tentative nods- and you could see the puzzlement in faces, wondering where on earth this conversation had come from and where it could possibly be heading.

“She’s my friend”, M told us proudly.  Our responses were probably not very serious but it seems M was used to this.  She pulled out photographs, and sure enough, there was M, pictured, beaming as she stood with Angelina Jolie.

The penny dropped as we realised and vaguely remembered that Angelina Jolie had visited Jaffna in 2003 in her role as UNHCR Goodwill Ambassador. Of course she had stayed at the same guest house as I had, being one of not many options. Her visit was warmly remembered, and it speaks volumes that she had apparently maintained contact with M.

UN Ambassador Angelina Jolie’s visit to Jaffna 2003

Of course, our chests swelled a little with pride, at having something in common with Angelina Jolie.

Now it is not hard to see where this discussion is going.  Oh yes indeed, I am finally joining the conversation on Angelina Jolie’s news this week.

Here is something else we have in common. I now also share the fact that we have both been faced with breast cancer and taken the decision to have a mastectomy in addition to sleeping in the same guest house and enjoying M’s food in Jaffna.

Unsurprisingly, the article in which Angelina Jolie shared her news has sparked off incredible interest and discussion. She has, in my view, selflessly decided to use her celebrity status to highlight the issue of the genetic mutation which gives her personally a high chance of breast cancer.  She has shared private and intimate details about mastectomy in order to raise awareness and understanding about the genetic mutation and options.  The article has prompted all manner of discussions both in support of and critical of her decision and how she has shared it. The Breast Cancer Blogosphere has been crammed with these discussions and my goodness have I learned a lot from these.  Angelina Jolie’s article has prompted debate around the issues of choice, genetic testing, access to options and the very complex issue of the patenting and ownership of genetic material which is taken for testing. Yep, patenting and ownership – read this excellent article and have your eyes opened!

For me though, the most valuable message to draw from her slant was the reassurance to women that they too can go through a procedure which strikes fear into our hearts. I have enormous respect for her decision to share very publicly, something which is so intimate and personal.  Thank you, Angelina.

One argument put forward has been that the issue of genetic testing is a bit of a red herring in that such a small number of breast cancers are due to the genetic mutation.  That is probably true.  But the simple question in my mind is – how on earth can we know that if so few can access testing? Guidelines vary according to health provider, insurer etc, but are generally based on criteria drawn from family history, ethnicity and age at diagnosis for example.  My own daughter can not currently be tested unless I am tested positive (according to current NHS guidelines, I understand, but that could perhaps change if the Jolie effect strengthens. Currently though, I would have to self fund to test and my surgeon does not believe that I hit enough of the triggers to warrant this.  That may change, let’s see.

What I do want to discuss, though is something which is raised in Angelina’s article and which comes up in many of the ensuing discussions.  And which I see as a gap in the discourse relating to an issue which I am passionately and deeply troubled by.

The article quotes

“Breast cancer alone kills some 458,000 people each year, according to the World Health Organization, mainly in low- and middle-income countries. It has got to be a priority to ensure that more women can access gene testing and lifesaving preventive treatment, whatever their means and background, wherever they live. The cost of testing for BRCA1 and BRCA2, at more than $3,000 in the United States, remains an obstacle for many women.”

The points which scream at me refer to the fact that deaths are “mainly in low and middle income countries” followed soon after by the information that the cost of testing for BRCA1 and BRCA2 is  “more than $3,000 in the United States”.  Here I go again.  This is my refrain about equity, or rather inequity, especially in so many developing countries.  Quite simply, there are more deaths in places where people have least means.  If genetic testing is accessible either through public Health Services, Insurance cover or private means then there is a choice.  It seems to me, that for a significant number, particularly in developing countries, these opportunities just do not exist or are way out of reach.

The same point was put beautifully by my friend (that is another wonderful story, which I would love to share another day) who is undergoing treatment right now for her breast cancer.  She was interviewed recently and discussed her treatment.

“’It’s a hideous process, but there’s not a day goes by I don’t count my lucky stars,” she says.

Were she a simple villager in East Timor, with no means to travel abroad for treatment, ”you’d basically just wait your day to die”.

That refers to treatment.  Survival. Not to screening, and certainly not to genetic profiling and possible options to reduce risk.

In my view, there critical point underneath this discussion was brought to the fore in this article. I do quote out of context slightly, in that the author is highlighting that the options are not only available to celebrities, and encouraging patients to be informed and ensure that they get the best surgical options available to them. But underlying assumption sweeps aside the fact that the fact that far too many are not so privileged.  The article states that

Angelina Jolie’s remarkable story should bring hope to breast cancer patients and those at risk of developing the illness.

Absolutely.

However, it continues:

Procedures like Jolie’s are available to all women.

I’m sorry?  Available to all women?

This.

Is.

Simply.

Not.

So.

Please, please remember that the world is a diverse place. Please do not forget that many women (and men) live in very differing contexts and situations.  What many of us can take for granted, is way out of reach for many, many others.  For example:

• Reliable information is not available to all women, especially where traditional beliefs are important but not necessarily medically based.

• Access to health screening is not available to all women.

• Mammograms are not available to all women.

• Diagnostic procedures are not available to all women.

• Expensive cancer surgery and treatments are not available to all women.

And I have not even mentioned genetic testing………………

I am not a celebrity nor personality in any way.  But I am privileged and I know it.  I have access to information, support, medical treatment and ongoing medical care. I value and cherish this and am inordinately thankful.

And while I can, I will shout out loudly, with the unheard voices of those who do not have these.

Lest we ever forget.