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

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.

KSG interview

“’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.

forgetmenot

Lest we ever forget.

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28 thoughts on “From Jaffna to mastectomy. And beyond.

  1. well done! a friend used to say to me “Just because they say it doesn’t make it so” and of course we know little Virginia said, “If it says it in the Times it must be so” Wrong. wrong. wrong and well put.

  2. As always, Philippa, you hit the high notes here. As an uninsured American whose mother died of breast cancer, I know all too well about lack of access to diagnostic tests and treatment. For M and others like her (I had forgotten about her photo with Angelina – thanks for the memory!) it is far worse, as there’s barely awareness at all. My hat is off to Angelina for this reason – putting it on the agenda and starting / continuing the conversation about cancer, women and access to health care for all.

    • Oh , J – I so appreciate your comment. And I was thinking of you as I wrote this, given that you and I first met at M’s on that very visit I wrote about in this post! Yes, that is exactly the thing, the awareness is so critically needed in so many places. I do not intend to stop shouting any time soon!!

  3. Very well said, Philippa. I’ve been waiting for your post – and you are right, it’s a different take from so many simply because you’ve remembered what many of us have forgotten (or not associated), so many men and women around the world can’t get the care they need, let alone these expensive tests. Universal healthcare is not actually universal. In the midst of our own crises, it’s unfortunately easy to forget. ~Catherine

    • Thank you so much, C – it is not that the other takes have not been important. It just seems that this is not on the radar at all. I want to keep it there. Thanks for your support and for listening 🙂

  4. Thank you for this post. Huge disparities in access to care exist in each country and worldwide. Recently the conversation has focused on the expense of genetic testing and reconstructive surgery. However as you pointed out, in many countries (and in areas of the US) “early detection” and “prevention” are simply no part of the vocabulary. There are no effective screening methods in countries where basic medical care is lacking. It’s important to address costs of procedures and access to reconstructive surgery. But it’s equally important, perhaps more so, to address the lack of basic medical care worldwide. Thank you again for this important post.

    • Thank you so much for adding your professional perspective to this, Dr Attai, and supporting what is such a disparity indeed. Thank you too for highlighting that there are significant pockets where understanding and awareness of early detection and prevention lacks, even in developed countries. Thank you for bring your voice to this aspect of the discussion.

  5. I love your writing FBG and this is yet another critical point that so many need to be reminded of. I’ll watch your fiesty space over the coming weeks. Thank you.

    • D!! Lovely to hear from you, and I really appreciate your supportive words. This space indeed aims to be ever feisty, your insights and inputs are very much appreciated. xxx 🙂

  6. “and while I can I will shout out loudly with unheard voices of those who do not have these” … Philippa, we, those on the other side of the world, are so lucky to have people like you who are willing to represent our voices. thank you!

  7. It’s amazing how different health care is in other parts of the world. I found an article written in India talking about how not only is the test too expensive but the stigma of having ones breasts removed whether it’s preventative or even breast cancer is horrible because it devalues a woman’s worth. Here you show the huge difference in the fact that in other parts of the world woman have no access to so many tests. Thank you for sharing this fascinating information and I love your story of where you and Angelina stayed. Your life is so interesting.

    • Thank you – that disparity is so wide isn’t it? And thank you too for emphasising that it is complex and often sensitive with cultural stigma often playing a part. I have a plan to follow this post up very soon with in depth discussion and insights into cancer in developing countries. And yes, I am indeed blessed with my life …….. 🙂 🙂 🙂

  8. Pingback: The Chatter About Jolie | Chemobabe!

    • Thank you for reading and hearing 🙂 It feels very frustrating to see such a massive need and not know how or where to start to do something about it. Writing on here is a start, I guess…
      Thank you

  9. Pingback: The Chatter About Jolie - Breast Cancer Consortium

  10. dear philippa,

    this post illustrates just how the disparity of testing and treatment is so widespread; but it also sends a very poisitve message that those of us privileged to be free from cultural repercussions and monetary restraints need to brainstorm about how we can make a difference to right these wrongs. we are so fortunate to have you, dear philippa to remind us that the breast cancer community is a global one, and that with all the resourses of insight, compassion, and acknowledgement that we are all citizens of the universe, we should and can help do all we can to narrow, indeed, erase, those disparities. i am deeply touched that you have used your blog to reach out and put this issue on the table, and intrigued and supportive of any endeavors you are working onto make a differnce. please keep us posted!

    much love and encourgement, along with warm hugs from the USA, XOXO

    karen, TC

    • Karen, I can’t tell you how much your comment means to me. I have been trying to find you here, to send my love, thoughts and prayers in this terribly difficult time for you. And in the midst of your grief, you have taken the time and trouble to lend your support and voice to this issue. I am humbled, and privileged to know you (cyberly speaking of course 😉 )

      Thank you so much, with lots of love winging its way over to you
      xxx

      • oh, dear philippa, thank you so much for your kind words. i am so grateful for your love, your thoughts for me, and your prayers – i feel them all winging their way over and gently landing in my heart. xoxo, love, karen

  11. Philippa, I’m catching up on my blog reading, and I’m certainly glad I read this post. It is truly excellent! Thank you for addressing the disparities among people. Not everyone has access to top-quality health care or even information. Well-said!

  12. Pingback: It’s a small, inequitable world. | Feisty Blue Gecko - a tail of the unexpected

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