Angelina Jolie’s choice, our challenge

Today the New York Times published a very personal and, for many people, unexpected op-ed by actress, director, and humanitarian Angelina Jolie. Ms. Jolie, a carrier of the gene BRAC1 with a mutation that significantly increases breast cancer risk, recounts her decision and experience undergoing a preventive double mastectomy — the surgical removal of both of her breasts. There should be no shame in undergoing such a procedure. Still, Ms. Jolie feels compelled to note: “On a personal note, I do not feel any less of a woman.” This is a real concern for many women.

The more we talk about women’s health and the unique health experiences women face, the better. The same goes for men. Our bodies are often imbued with such greater expectations than their basic purpose, to allow us to live our lives. We make judgments about each other based on shape and size, and spend countless, wasted hours making these judgments about ourselves.

I applaud Ms. Jolie for her contribution to this important conversation. It also raises important issues for women’s health beyond the New York Times readership. Ms. Jolie writes,

For any woman reading this, I hope it helps you to know you have options. I want to encourage every woman, especially if you have a family history of breast or ovarian cancer, to seek out the information and medical experts who can help you through this aspect of your life, and to make your own informed choices.

I wish this were more true than it is. For many women around the world, there are not many options. Ms. Jolie is well aware of this, and I believe she will be one among many fighting to change the status quo. In the meantime, there are sobering facts to face at home in Uganda.

  • Breast cancer is the third most common cause of cancer among women in Uganda, behind cervical cancer and Kaposi’s sarcoma (the latter of which are largely preventable).
  • There are two mammography units in Uganda.
  • The vast majority of Ugandan women present at late stages in the cancer’s progression, at which point there is little chance of survival.
  • The estimated budget of the Uganda Cancer Institute is approximately Ushs 5.5 billion, just over US$2 millon (Sector Budget Framework Paper). The State House budget is 36 times that, over Ushs 200 billion.
  • The cost of testing for BRAC1 and BRAC2, as Ms. Jolie notes, is US$3,000 in the United States, and completely inaccessible for almost all women in Uganda.

In comparative terms, Uganda has relatively low rates of breast cancer. But it’s hard to know how accurate these figures are due to poor surveillance and diagnosis in much of the developing world.

Citation: Bray, Freddie, Peter McCarron, and D. Maxwell Parkin. "The changing global patterns of female breast cancer incidence and mortality." childhood 4 (2004): 5.
Citation: Bray, Freddie, Peter McCarron, and D. Maxwell Parkin. “The changing global patterns of female breast cancer incidence and mortality.” childhood 4 (2004): 5.

Dying to be President

Meles Zenawi of Ethiopia is only the most recent of a series of African leaders to die while in office. Prof. John Atta-Mills of Ghana passed away in July, and Malawi’s Bingu wa Mutharika before that. Rumors continually swirl about the health of other current presidents, including Zimbabwe’s octogenarian, Robert Mugabe. The health of leaders is often veiled in secrecy, which can make it difficult to plan for potential transitions.

In the days immediately following the death of Atta-Mills, many of those I spoke to in Ghana were sad, but also a little angry. How could he dance and jog on his return from a medical check-up in the US when he knew he was so sick? Former president Jerry Rawlings gave a frank, if rather callous, assessment on the BBC: “I think had he been advised and done something wiser, you know, earlier on, he could have probably survived, you know, for, I don’t know, for another six-seven months…” There was a feeling expressed by some people I spoke to that Prof. Atta-Mills should have taken time off, and taken care of himself. This calls to a more general problem — the secrecy enshrouds the health of leaders sets up governments for moments of crisis. Fortunately, Ghana and Malawi have both managed to pull through with successful transitions, but others may not be so lucky.

Songwe and Kimenyi examine this issue in their op-ed, “The Health of African Leaders: A Call for More Transparency” at Brookings:

As the number of ailing presidents increases, three major issues are emerging: First, the continent demands more transparency regarding it’s leaders’ health; second, democracies need clear term limits; and third, successful democratic transitions require transition processes outlined in the constitution, that are understood and familiar to all. With these safeguards in place, the risks of administrative paralysis, political tension, internal conflict and instability that characterize situations in many African countries could be mitigated. Unfortunately, in many African countries today there is a general lack of clarity around term limits and even less clarity and agreement on succession: Term limits are changed on a rolling basis, and constitutions are amended frequently.

Who Cares About Cancer?

Cancer is not captivating. Or, at least, in sub-Saharan Africa it doesn’t seem to be when compared with, say HIV/AIDS or malaria. Why is that? Is it the sheer numbers? The assumption that you are more likely to die of a communicable disease before you will ever develop cancer in this region? Or maybe, like global warming, it’s a scary topic that it is easier to put off thinking about until tomorrow. Or the next day…Or the next day…

It seems like a lot of friends of friends are dying or have died from cancer recently in Kampala. On Sanyu FM this morning, a caller asked for advice on how to handle his relationship with a girl who had terminal cancer. While I have long been interested in health and healthcare in Uganda, I have never looked much into cancer prevalence or treatment. I assumed, at any rate, that treatment was prohibitively expensive for most people when available at all. But do we even have accurate figures on who has cancer and where? I went circles around the WHO Uganda site to find any figures. At best they have projections for 2005, based on 2002 burden of disease estimates. Not exactly what you might call up-to-date or very accurate.

I next went to Uganda’s most recent Demographic and Health Survey, from 2006. I was shocked to find that in searching “cancer”, there was a SINGLE result, out of 501 pages! It was a note on reproductive organ cancer made in reference to the Sexual and Reproductive Health Policy Guidelines that had been developed in 1994.

According to WHO’s stats, cervical cancer is the most common form of cancer in women, followed by breast cancer. In men, the most common is prostate cancer, followed by esophageal cancer. Lung cancer is surprisingly low on the list (9th for men, not even ranked for women), given the number of people I see smoking around Kampala (of course this is not indicative of the rest of the country, but still, Kampala-ites are more likely to be diagnosed anyway I would imagine).

Uganda does have a Cancer Institute, which is almost definitely underfunded, understaffed and ill-equipped, though I haven’t done much in-depth investigation of the place. While cancer may not yet be killing as many Ugandans as malaria or diarrheal disease (which primarily affects children), I have a strong suspicion that it is much more prevalent and pernicious than meets the eye. It may not be captivating, but it is killing. More on this to come…