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Having breast cancer… in Uganda

It is very easy to forget how privileged we are, especially in the face of something like breast cancer. I complain all the time about all the testing, the procedures, the treatments, the chemo, my hospital, etc. but every once in awhile I get a welcome reminder about how unbelievably privileged I am to have such easy and ready access to these life-saving medical treatments. My reminder today came in the form of an absolutely heartbreaking story in the New York Times about breast cancer in Uganda.

Worldwide 7.6 million people die each year from cancer, and although it is more prevalent in wealthy nations, 70 percent of cancer deaths occur in poor and moderate-income countries. For breast cancer, specifically, a woman in the US with breast cancer has a 20 percent chance of dying from the disease, while in poorer countries that woman’s chances jump to 40-60 percent.

And Denise Grady’s story in the Times paints a very clear picture of why the percentages

Mary Namata outside her home (taken from NY Times article, Photo Credit: Lynsey Addario)

are so much greater. As Dr. Fred Okuku, an oncologist at the Uganda Cancer Institute in Kampala says, “There is no word for cancer in most Ugandan languages. A woman finds a lump in her breast, and cancer doesn’t cross her mind. It’s not in her vocabulary.” So the problem begins with a severe lack of awareness and education. But, unfortunately, the problems don’t end there.

Mary Namata, a farmer in Buddo, a small village outside of Kampala, found a lump in her breast four years ago. She saw a doctor about it but he told her that her breast would need to be removed. She was going to go through with the mastectomy but friends and relatives talked her out of it, telling her the surgery would make the cancer spread. She tried herbs for awhile but the tumor grew so large that it began to protrude from her chest and it hurt so much she couldn’t sleep. She went into the breast clinic in Mulago, a place where so many patients file in on the one day that it is open that the majority don’t even get seen. Mary had to take a bus, two motor-scooter taxis and a second bus just to get there. Thankfully she was seen. The tumor was large but doctors said they were hopeful that it was not aggressive and had not spread. Nevertheless, they wanted to admit her right away. They wanted to keep her there so she would get the treatment she needed faster, but she declined. She needed someone to care for her mother and granddaughters and couldn’t just leave them behind. She promised to return.  When she came back she was carrying a suitcase, a plastic jug for water and bedding for her hospital bed, which is not otherwise provided. She assumed they would admit her but instead told her to come back the following week for a mastectomy. When she returned she was admitted but doctors decided to put her on drugs to shrink her tumor before surgery. She began chemo on August 19th. Unfortunately, the cancer institute ran out of chemotherapy drugs so Mary is now trying to scrape together the money to buy more herself.

Mary’s case is not isolated. This is how cancer treatments go in Uganda if they go at all. There is only one radiation machine in the whole country and it’s in such high demand that it operates 24 hours a day. The cancer institute, a group of one-story tin-roof buildings has six oncologists and they are the only ones in the country. They each could see upwards of 40 patients in a day and treat almost 3,000 a year. The tumor ward has 35 patients and 25 beds. The hospital, the only place where mastectomies can be performed, gives preferential treatment to patients who can pay, and has been accused of playing host to a healthy amount of corruption and bribery.

The article offers some rays of hope but the divide that must be crossed, between the kind of care that Mary needs and the kind of care that Mary gets, is vast. Activists like Gertrude Nakigudde, who is herself a young breast cancer survivor, are working very hard to get support and treatment for cancer patients in Uganda through the Uganda Women’s Cancer Support Organization which Gertrude founded in 2004.

For me, women like Mary have always been the source of my inspiration. In my real life and at my real job I work on African agriculture policy and fight alongside women smallholder farmers like Mary. Together we demand that they have access to the support that they deserve from their communities and their governments for the important work they are doing. I have met dozens of women across eastern Africa living in very similar circumstances, running small farms while taking care of family members and trying to make ends meet. Women smallholder farmers like these feed half of the world so their task is not small. They are among the most graceful, the most passionate, and the most inspiring people I have ever met. And they are fighters. I have seen them fight against domestic abuse, sexism, and systems that are built to ignore them and demand that they have access to resources, to education, and to a life with dignity.

I have no doubt that Gertrude and others will continue that good fight but it breaks my heart to think about what they have to go through. I know what it feels like to find a tumor in my breast, to have it hurt so bad it keeps me up at night, to be filled with fear about what it means for my life. But I have no idea what it feels like to be denied the care I need, to have to travel 2 hours just to get to that care, to be disappointed over and over by the medical community and to not get support from my friends and family about my health care decisions. I can only begin to imagine the suffering this would cause.

I know that Mary’s strength will be an inspiration to me so I am going to make beating this cancer an act of solidarity with all of the Mary’s of the world. It feels like such a small act but solidarity and fighting this thing are the best I have to give right now. Hopefully someday I can do more. And if you are looking for a place to donate this Breast Cancer Awareness Month I would strongly suggest you find organization’s like Gertrude’s in places like Uganda where resources AND awareness are so urgently needed.