the cancer divide

8/13/2019 The Cancer Divide

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THE CANCER DIVIDE

Uganda Fights Stigma and Poverty to Take On Breast Cancer

http://www.nytimes.com/2013/10/16/health/uganda-fights-stigma-and-poverty-to-take-on-breast-

cancer.html?_r=0&adxnnl=1&adxnnlx=1381924137-gBSBt6ChzDBDj1mQuJOAHg

Jessy Acen, 30, who has advanced breast cancer, is bathed by her twin sister at home in thecity of Gulu, in northern Uganda. Ms. Acen, a tailor, has two young sons. Lynsey Addario forThe New York Times

THE CANCER DIVIDE

Uganda Fights Stigma and Poverty to Take On Breast CancerByDENISE GRADY

OCTOBER 15, 201366 COMMENTS

KAMPALA, Uganda Mary Namata unbuttoned her dress in an examining room at MulagoHospital, revealing a breast taut and swollen with grape-size tumors that looked as if theymight burst through the skin.

How long have you had this? a doctor asked gently.Ms. Namata, 48, an elegant womanwith stylishly braided hair and a flowing, traditional Ugandan dress, looked away,

shamefaced.

About a year, she murmured. The truth, she admitted later, was closer to four years.

Such enormous tumors, rare in developed countries, are typical here. Women in Uganda,trapped by stigma, poverty and misinformation, often do not see help for breast cancer untilit is too late.
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For Ms. Namata, though, there was still hope that the cancer had not yet spread beyond thebreast, her doctors said. Treatment could prolong her life, maybe even cure her if it startedsoon.

But would she be treated in time? Women in Africa often face perilous delays in treatment asa result of scarce resources, incompetence and corruption. Would Ms. Namata wind up like

so many women here, with disease so far gone that doctors can offer nothing but surgery toremove rotting flesh, morphine for pain and antibacterial powder to kill the smell of festeringtumors that break through the skin?

Cancer has long been neglected in developing countries, overshadowed by the struggleagainst more acute threats like malaria and AIDS. But as nations across the continent havemade remarkable progress against infectious diseases once thought too daunting to tackle,more people are living long enough to develop cancer, and the disease is coming to theforefront. Given the strides poor countries have made against other health problems, theyshould also be able to improve the treatment of cancer, public health experts increasingly say.

Jessy

Jessy Acen, 30, who has advanced breast cancer, contends with her own poverty and withUganda's limited resources in her fight to stay alive.Read Jessy's Story

Video by Nichole Sobecki and John WooCover photo by Lynsey Addario

Two years ago, the United Nations began a global campaign against noncommunicablediseases cancer, diabetes, heart and lung disease noting that they hit the poor especiallyhard. Worldwide, at least 7.6 million people a year die from cancer, and 70 percent of thosedeaths occur in poor and moderate-income countries, according to the World HealthOrganization.
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Breast cancer takes a particularly harsh toll. It is the worlds most common cancer in womenand their leading cause of cancer death, with 1.6 million cases a year and more than 450,000deaths.

Survival rates vary considerably from country to country and even within countries. In theUnited States, about 20 percent of women who have breast cancer die from it, compared with

40 to 60 percent in poorer countries. The differences depend heavily on the status of women,their awareness of symptoms and the availability of timely care. At the same time, scientistsdeepening insights into the genetic basis of cancer have introduced a complicated newdimension into the care of women globally.

Uganda is trying to improve the treatment of all types of cancer in ways that make sense in aplace with limited resources. A new hospital and clinic, paid for by the Ugandan government,have been added to the Uganda Cancer Institute in Kampala, though they have not yetopened, for lack of equipment. A research center is being built.

But women like Ms. Namata, with breast cancer so advanced that there is just a tiny windowof time, if any, in which to save their lives, will be among the toughest challenges here.

The terrible part about breast cancer is that if we just did what we already know how do inother places, we could make major shifts in survival, said Dr. Benjamin O. Anderson, whoheads the Breast Health Global Initiative, based at theFred Hutchinson Cancer ResearchCenterin Seattle.
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There is a pressing need for action because breast cancer is escalating, the initiative says,predicting that incidence and death rates in developing countries will increase by more than50 percent in the next 20 years.

The breast cancer rate in Africa seems to be increasing, though cervical cancer kills morewomen in the sub-Saharan regions. It is not clear whether breast cancer is actually becoming

more common, or is just being detected and reported more often, but physicians consider it alooming threat. Compared with breast cancer patients in developed countries, those in Africatend to be younger, and they are more likely to die, in large part because of late diagnosis andinadequate treatment.

Doctors also suspect that more aggressive types of tumors may be more common in youngAfrican women, as they appear to be in young black women in the United States, thoughthere is not enough pathology data from Africa to know for sure. Among women who dieyoung (ages 15 to 49) from breast cancer, 72 percent are in developing countries, and manyleave small children.

The story of breast cancer here is a miserable one, said Dr. Fred Okuku, an oncologist at theUganda Cancer Institute in Kampala, which treats about 200 women a year for breast cancer.There is little information for the people who need to be helped. Only a few know how toread and write. Many dont have TV or radio. There is no word for cancer in most Ugandanlanguages. A woman finds a lump in her breast, and cancer doesnt cross her mind. Its not inher vocabulary.

Mary Namatas StoryMs. Namata, a gracious woman with a radiant smile, lives in Buddo, a village outsideKampala, in a three-room tin-roof house with no electricity or indoor plumbing. Lushjackfruit and papaya trees surround the house, which Ms. Namata shares with twogranddaughters and her elderly mother, who is blind and a bit senile. Ms. Namata used tofarm, but now looks after her mother and the girls, while their mother Ms. Namatas onlydaughter works as a hairdresser to support the entire family. Ms. Namata and her husbandparted ways long ago.

In late July, sitting on the cement floor with her granddaughters close by her side and hermother listening from a couch, Ms. Namata said that she had first noticed a lump in her rightbreast four years before, and that a doctor had told her the breast would most likely have tobe removed.

Her mother broke into the story, shaking her head angrily and insisting that no womanshould have her breast cut off.

Mastectomy is far more common in Africa than in developed countries, even for small lumps,because the technology may not be available to make sure that a lumpectomy is doneproperly.


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Mary Namata, 48, outside her home in the town of Buddo, near Kampala. Ms. Namata, whohas large tumors in her right breast, later began chemotherapy at the Uganda CancerInstitute in Kampala, to shrink the lumps in preparation for a mastectomy. Lynsey Addariofor The New York Times

Ms. Namata went on, saying she had planned to have the surgery, but friends and relativestalked her out of it, telling her that it would just spread the cancer and kill her. Instead, shedecided to try herbal treatments, which her daughter took out a loan to pay for.

Herbs are popular here, widely used for stomach trouble and coughs, and many people trythem for cancer. They are sold in shops and from vans parked along busy roads, and arepeddled door to door by Masai tribesmen from Kenya. In Kampala not far from the cancerinstitute, herb peddlers in a van hawked remedies for ulcers, diabetes, toothaches andsyphilis over a loudspeaker, and offered a yellow plastic container labeled Healthy Boosterfor $7 to treat cancer.

Ms. Namatas tumors kept growing and her breast began to hurt so much that she could not

sleep. A hospice program for people with advanced cancer gave her morphine. Finally, onJuly 17, the pain drove her back to the breast clinic at Mulago. The clinic is held only once aweek, and does not have enough doctors to see all the patients who show up; many are senthome week after week and told to come back another time.

On this day, more than 100 women jammed its benches and dim corridors, where a guardcalled out warnings to beware of pickpockets. Ms. Namata was among the lucky few whowere called in to be examined.


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A team of American doctors happened to be visiting. Dr. Constance D. Lehman, a radiologistat the Fred Hutchinson center and the director of breast imaging at the University ofWashington, used ultrasound to scan Ms. Namatas armpit, and then performed a needlebiopsy. A pathologist from the Hutchinson center, Dr. Margaret Porter, studied the biopsyslide under a microscope.

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Despite the large tumors, the doctors were hopeful. The cancer did not seem to have spread,

and the cells did not look terribly aggressive, Dr. Porter said.

But it would be important to treat her quickly, maybe with chemotherapy or a hormonaltreatment first to shrink the tumors and make it easier to perform a mastectomy.

Im so nervous that shell fall through the cracks, Dr. Lehman said. Shes at a point whereshe is curable.

The Americans huddled with a Ugandan surgical resident, who suggested admitting Ms.

Namata to the hospital immediately. The Americans were delighted. But Ms. Namatadeclined, saying she had to find someone to care for her mother and granddaughters. Shepromised to return.

The American doctors, busy examining other patients, did not learn until later that she hadleft. Crestfallen, they wondered if she would come back.

A First Step to ProgressBreast cancer in Africa is usually not diagnosed until it has reached Stage 4, the final stage,when it has invaded organs or bones and cannot be cured. If doctors could just find the

disease a bit earlier known as downstaging and start treatment atStage 3,before thecancer has spread to distant parts of the body, they could increase a womans odds ofsurvival by 30 percentage points, according to the 2012 World Breast Cancer Report,published by the International Prevention Research Institute.

Downstaging could be accomplished by getting women like Ms. Namata into the clinic assoon as they notice a lump. But finding cases earlier will require sending health workers intorural areas to educate and examine women, Dr. Okuku said.
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Earlier diagnosis here would not require mammograms to search for tiny tumors too small tofeel. Instead, American experts hope to help downstage breast cancer in Uganda by teachingdoctors to use ultrasound to examine lumps that women have already noticed, and quicklyidentify those who most urgently need treatment. Ultrasound works better thanmammography in younger women, and can help to distinguish cysts and other benigngrowths from lumps that need biopsies.

In July, a team led by Dr. Lehman gave a course on ultrasound to doctors from MulagoHospital and the cancer institute, which share a campus in Kampala. Dr. Lehman hopeseventually to set up a more efficient breast clinic, where women waiting to be seen would sortthemselves into more and less worrisome groups by matching their symptoms to imageson a laminated card. The images would include photographs of bulging tumors in the breastso that someone like Ms. Namata could move to a high-priority group.

I know that paradigm can work, and I know it can be translated to countries around theworld, Dr. Lehman said.

Patients awaiting radiation treatment at Mulago Hospital in Kampala. The hospital hasUganda's only radiation machine. Lynsey Addario for The New York Times

She and most other breast cancer specialists say that the last thing Africa needs is to mimicthe screening programs in richer countries that offer mammograms every year or two to allhealthy women over the age of 40 or 50. There are nowhere near enough trained people inAfrica to run the machines, maintain them and read the scans. In Uganda, a donatedmammography van was used for a cancer-education program not for mammograms.


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Experts say that emphasizing mammograms could divert resources from the many womenwho urgently need care for palpable lumps that can easily be found without mammograms.In any case, mammography would not do a good job of finding tumors in the largeproportion of African patients under 50, because younger women have dense breast tissuethat hides tumors from X-rays.

Even in Western countries, there are growing concerns about potential harm frommammography, because it can identify minute growths that might never progress but arenonetheless given aggressive treatments with significant side effects.

To transfer such screening-mammography programs to Africa feels wrong, Dr. Lehmansaid. It feels like were infecting them with our problems, rather than really sharing withthem our triumphs.

The Birth of an ActivistGertrude Nakigudde is an accountant for an international freight forwarding firm inKampala. Twelve years ago when she was 28, she noticed a lump in her breast. Assuming shewas too young to have cancer, she did not see a doctor for about a year.

By then, she had Stage 2 breast cancer a tumor more than two centimeters in diameter thatmay have spread to nearby lymph nodes and needed a mastectomy and chemotherapy.

The treatments came as a tremendous shock. No one warned her that her hair would fall out,or that she would vomit. The government did not help to pay for chemotherapy (as it doesnow), so she had to buy the drugs, syringes and gloves herself. Once, on a hot day, her

medication deteriorated in the heat on the way to the hospital and had to be thrown away; noone had told her it had to be kept cold. Radiation treatment was recommended, but themachine was broken, so she gave up and went without it.

An activist was born.

She joined forces with other patients to form theUganda Womens Cancer SupportOrganization.It now has about 50 members.
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Mable Mutamba, 37, has advanced breast cancer that has broken through the skin and eatenaway much of her right breast. She tried to treat the disease with herbs for about a year

before seeing a doctor. Ms. Mutamba has five children, ages 1 to 16. Lynsey Addario for TheNew York Times

Its volunteers visit the cancer institute and the breast clinic at Mulago Hospital to counselother women and hand out pamphlets, bras and breast prostheses. Most of all, they try tospread the word that breast cancer can be cured if it is treated early, and to dispel stigma andmisinformation. Some women believe that cancer is always fatal, which becomes a self-fulfilling prophecy by keeping them away from doctors.

Patients encounter demoralizing drug shortages and mistakes like lost biopsies that can leadto dangerous delays in care. Chemotherapy is supposed to be free at the cancer institute, butif it runs out of drugs, patients have to buy their own. And the drugs do run out, because thegovernment agency that supplies them does not consistently order enough. In addition, somedrugs have become harder to obtain because problems with counterfeit chemotherapy drugsfrom India have led the institute to stop buying from that country, which has been animportant supplier.

A number of women in Ms. Nakiguddes group have been deserted by husbands orboyfriends because they have cancer, she said, counting herself among them. Some have beenfired from work for taking time off for treatment. It is not uncommon for women to try tokeep the disease a secret, for fear that if word gets out, no one will marry their children.

Women with one breast are sometimes shunned as witches or as having been cursed by awitch.

Ms. Nakigudde said one of the biggest problems for breast cancer patients is that the cancerinstitute does not yet offer surgery or radiation, so women must seek those treatments atMulago Hospital, which is huge, disorganized and intimidating. Its radiation machine, theonly one in the country, is a rickety cobalt unit long past its prime. There is such a demand for


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treatment patients are referred here from Kenya, Rwanda and South Sudan that themachine is kept running night and day.

Ms. Nakigudde and other group members have also tried to expose what they describe as aculture of bribery that delays or denies treatment. The hospital has two tiers: free, publicwards for the poor, and a private one for those who can pay. Paying patients are generally

treated more quickly. Ms. Nakigudde said her group receives numerous reports from womenwho are supposed to receive free care but say they are being pressured to pay surgeons andother hospital employees for everything from being admitted to shortening the wait forsurgery or radiation.

Her group has been working with a bioethics committee at Makerere University (whosemedical students train at Mulago) to find a way to discipline doctors and end the demandsfor money.

A spokesman for Mulago Hospital, Enock Kusasira, confirmed that there were problems,noting that it is a massive complex open to the public and teeming with 7,000 people on anygiven day 5,000 patients and their relatives, and 2,000 employees.

Edith Kemigisha, 9, screamed and wept as she looked at the dead body of her mother, JollyKomurembe, hours after she died of advanced breast cancer and before being transported toher village for burial in Western Uganda, in Kampala. Ms. Komurembe died of breast cancerthat had spread to her liver and other organs.Lynsey Addario for The New York Times

There are those incidents, Mr. Kusasira said. What can you do about them?

He attributed some bribetaking to students and con men who steal white coats and pose ashospital employees, something widely acknowledged to occur. But hospital employees arenot highly paid, and Mr. Kusasira said some patients do not want to wait their turn and lurethese workers into temptation.


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Ultimately, Ms. Nakigudde said, the best hope may lie in the continuing expansion of thecancer institute, where bribery is not entrenched. Its expansion cannot come too soon. Now, itis a cluster of one-story tin-roof buildings with too many patients and not enoughchemotherapy. The tumor ward often has 35 patients for its 25 beds. In mid-July, a half-dozenpatients lay on mattresses on the floor, tucked wherever they fit. Relatives slept on matsunder the beds. Most of the patients had advanced cancer, and some had come here to die.

The new hospital will bring the institutes first operating rooms, and administrators hope toadd a radiation center. They also want to improve its pathology labs so they can perform teststhat will help determine which treatments will best suit each patient. In addition, a newcancer research center with another clinic is being built with money from Uganda, the UnitedStates Agency for International Development, and the Hutchinson center in Seattle.

Visits to the cancer institute surged to 2,800 in 2012 from 1,800 in 2011. Its six oncologists, theonly ones in the country, are struggling to keep up; each one might see 40 patients a day. Atent had to be pitched at the outpatient clinic to hold the overflow from the waiting room.

Dr. Jackson Orem, the director of the cancer institute, said, We have become a victim of ourown success.

What is needed ultimately, he said, is a nationwide cancer program involving clinics inremote areas and a system to refer patients who need specialized treatment to the cancerinstitute.

My prayer, Dr. Orem, 51, said, is to see that by the time I retire, there is a system inplace,

a safety net for cancer patients.

Treatment Begins

Mary Namata, 48, is being prepared for a needle biopsy at Mulago Hospital in Kampala, by aphysician visiting from the United States, Dr. Constance Lehman, a radiologist at theUniversity of Washington and the Fred Hutchinson Cancer Research Center in Seattle. Ms.Namata's tumors have gone untreated for about four years.Lynsey Addario for The NewYork Times


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A week after seeing the American doctors who by now had gone home Ms. Namatatraveled two hours back to Mulago by bus, two motor-scooter taxis and another bus.

Expecting to be admitted, she hauled a suitcase, a plastic jug holding more than a gallon ofwater and, because hospitals here do not provide sheets or blankets, an enormous roll ofbedding. The pressure of the bedroll against her breast clearly pained her. The activist, Ms.

Nakigudde, had put in a word for her, and a surgeon had agreed to see her. Led by a memberof the group, Ms. Namata squeezed through the crowded corridors.

The surgeon examined her but did not admit her, telling her instead to return the followingMonday for a mastectomy. Drug treatment would come after the operation, he said, givingadvice contrary to that offered by the American physicians. She hauled her belongings home.

The next Monday, she was admitted to Mulago Hospital. She waited for a week in constantpain before another surgeon finally examined her, only to tell her, as the American doctorshad, that it would be better for her to take drugs to try to shrink the tumors before surgerybecause they were so large that it would not be possible to close the wound. She left thehospital frustrated and frightened, beginning to doubt that she would survive.

But she made her way to the cancer institute, where she began receiving chemotherapy onAug. 19.

Her hair, expertly braided by her daughter, is now gone. Her skin has darkened, a commonside effect of chemotherapy that African women find particularly distressing, for aestheticreasons, but also because H.I.V. treatment does the same thing, and people assume they have

AIDS.

I look like a scarecrow, Ms. Namata said. I dont want to eat or drink.

She calls Ms. Nakigudde just about every night for advice on what to eat, and reassurancethat her hair will grow back.

The cancer institute has run out of chemotherapy drugs again, so she must buy them herself,and is struggling to scrape together the cash. Sometimes, rather than asking her daughter formoney, she borrows from other people.

But the tumors seem to be shrinking. She no longer needs morphine. In a few months, shehopes to have surgery. And she prays that she will live.

Jennifer Bakyawa contributed reporting from Kampala.

A version of this article appears in print on October 16, 2013, on page A1 of the New Yorkedition with the headline: Poverty and Stigma Give an Edge to Disease.

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