Uganda Fights Stigma and Poverty to Take On Breast Cancer
KAMPALA, Uganda — Mary Namata unbuttoned her dress in an examining room
at Mulago Hospital, revealing a breast taut and swollen with grape-size
tumors that looked as if they might burst through the skin.
“How long have you had this?” a doctor asked gently. Ms. Namata, 48, an
elegant woman with 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 until it is too late.
For Ms. Namata, though, there was still hope that the cancer had not yet
spread beyond the breast, her doctors said. Treatment could prolong her
life, maybe even cure her — if it started soon.
But would she be treated in time? Women in Africa often face perilous
delays in treatment as a 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 to remove
rotting flesh, morphine for pain and antibacterial powder to kill the
smell of festering tumors that break through the skin?
Cancer has long been neglected in developing countries, overshadowed by
the struggle against more acute threats like malaria and AIDS. But as
nations across the continent have made 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 the
forefront. Given the strides poor countries have made against other
health problems, they should also be able to improve the treatment of
cancer, public health experts increasingly say.
Two years ago, the United Nations began a global campaign against
noncommunicable diseases — cancer, diabetes, heart and lung disease —
noting that they hit the poor especially hard. Worldwide, at least 7.6
million people a year die from cancer, and 70 percent of those deaths
occur in poor and moderate-income countries, according to the World
Health Organization.
Breast cancer takes a particularly harsh toll. It is the world’s most
common cancer in women and their leading cause of cancer death, with 1.6
million cases a year and more than 450,000 deaths.
Survival rates vary considerably from country to country and even within
countries. In the United 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, scientists’ deepening insights into the genetic basis of cancer
have introduced a complicated new dimension into the care of women
globally.
Uganda is trying to improve the treatment of all types of cancer in ways
that make sense in a place 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 yet opened, 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 window of 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 in other places, we could make major shifts in
survival,” said Dr. Benjamin O. Anderson, who heads the Breast Health
Global Initiative, based at the
Fred Hutchinson Cancer Research Center in Seattle.
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 than 50 percent in
the next 20 years.
The breast cancer rate in Africa seems to be increasing, though cervical
cancer kills more women 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 a looming
threat. Compared with breast cancer patients in developed countries,
those in Africa tend to be younger, and they are more likely to die, in
large part because of late diagnosis and inadequate treatment.
Doctors also suspect that more aggressive types of tumors may be more
common in young African women, as they appear to be in young black women
in the United States, though there is not enough pathology data from
Africa to know for sure. Among women who die young (ages 15 to 49) from
breast cancer, 72 percent are in developing countries, and many leave
small children.
“The story of breast cancer here is a miserable one,” said Dr. Fred
Okuku, an oncologist at the Uganda 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 to
read and write. Many don’t have TV or radio. 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.”
Mary Namata’s Story
Ms. Namata, a gracious woman with a radiant smile, lives in Buddo, a
village outside Kampala, in a three-room tin-roof house with no
electricity or indoor plumbing. Lush jackfruit and papaya trees surround
the house, which Ms. Namata shares with two granddaughters and her
elderly mother, who is blind and a bit senile. Ms. Namata used to farm,
but now looks after her mother and the girls, while their mother — Ms.
Namata’s only daughter — works as a hairdresser to support the entire
family. Ms. Namata and her husband parted ways long ago.
In late July, sitting on the cement floor with her granddaughters close
by her side and her mother listening from a couch, Ms. Namata said that
she had first noticed a lump in her right breast four years before, and
that a doctor had told her the breast would most likely have to be
removed.
Her mother broke into the story, shaking her head angrily and insisting that no woman should 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 done properly.
Ms. Namata went on, saying she had planned to have the surgery, but
friends and relatives talked her out of it, telling her that it would
just spread the cancer and kill her. Instead, she decided 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 try them for cancer. They are sold in shops and from vans
parked along busy roads, and are peddled door to door by Masai tribesmen
from Kenya. In Kampala not far from the cancer institute, herb peddlers
in a van hawked remedies for ulcers, diabetes, toothaches and syphilis
over a loudspeaker, and offered a yellow plastic container labeled
Healthy Booster for $7 to treat cancer.
Ms. Namata’s 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, on July 17, the pain drove her back
to the breast clinic at Mulago. The clinic is held only once a week, and
does not have enough doctors to see all the patients who show up; many
are sent home 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 guard called out warnings to beware of pickpockets. Ms. Namata
was among the lucky few who were called in to be examined.
A team of American doctors happened to be visiting. Dr. Constance D.
Lehman, a radiologist at the Fred Hutchinson center and the director of
breast imaging at the University of Washington, used ultrasound to scan
Ms. Namata’s armpit, and then performed a needle biopsy. A pathologist
from the Hutchinson center, Dr. Margaret Porter, studied the biopsy
slide under a microscope.
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 hormonal treatment first to shrink the tumors and make it easier to
perform a mastectomy.
“I’m so nervous that she’ll fall through the cracks,” Dr. Lehman said. “She’s at a point where she 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. Namata declined, saying she had to find someone to
care for her mother and granddaughters. She promised to return.
The American doctors, busy examining other patients, did not learn until
later that she had left. Crestfallen, they wondered if she would come
back.
A First Step to Progress
Breast 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 at
Stage 3,
before the cancer has spread to distant parts of the body, they could
increase a woman’s odds of survival 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 as soon as they notice a lump. But finding cases earlier will
require sending health workers into rural areas to educate and examine
women, Dr. Okuku said.
Earlier diagnosis here would not require mammograms to search for tiny
tumors too small to feel. Instead, American experts hope to help
downstage breast cancer in Uganda by teaching doctors to use ultrasound
to examine lumps that women have already noticed, and quickly identify
those who most urgently need treatment. Ultrasound works better than
mammography in younger women, and can help to distinguish cysts and
other benign growths from lumps that need biopsies.
In July, a team led by Dr. Lehman gave a course on ultrasound to doctors
from Mulago Hospital and the cancer institute, which share a campus in
Kampala. Dr. Lehman hopes eventually to set up a more efficient breast
clinic, where women waiting to be seen would sort themselves into “more
and less worrisome groups” by matching their symptoms to images on a
laminated card. The images would include photographs of bulging tumors
in the breast so 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 the world,” Dr. Lehman said.
She and most other breast cancer specialists say that the last thing
Africa needs is to mimic the screening programs in richer countries that
offer mammograms every year or two to all healthy women over the age of
40 or 50. There are nowhere near enough trained people in Africa to run
the machines, maintain them and read the scans. In Uganda, a donated
mammography van was used for a cancer-education program — not for
mammograms.
Experts say that emphasizing mammograms could divert resources from the
many women who 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 large proportion of African patients under
50, because younger women have dense breast tissue that hides tumors
from X-rays.
Even in Western countries, there are growing concerns about potential
harm from mammography, because it can identify minute growths that might
never progress but are nonetheless given aggressive treatments with
significant side effects.
To transfer such screening-mammography programs to Africa “feels wrong,”
Dr. Lehman said. “It feels like we’re infecting them with our problems,
rather than really sharing with them our triumphs.”
The Birth of an Activist
Gertrude Nakigudde is an accountant for an international freight
forwarding firm in Kampala. Twelve years ago when she was 28, she
noticed a lump in her breast. Assuming she was 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 that may 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 does now), 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; no one had told her it had to be kept cold. Radiation treatment
was recommended, but the machine was broken, so she gave up and went
without it.
An activist was born.
Its volunteers visit the cancer institute and the breast clinic at
Mulago Hospital to counsel other women and hand out pamphlets, bras and
breast prostheses. Most of all, they try to spread the word that breast
cancer can be cured if it is treated early, and to dispel stigma and
misinformation. 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 lead to dangerous delays in care. Chemotherapy is
supposed to be free at the cancer institute, but if it runs out of
drugs, patients have to buy their own. And the drugs do run out, because
the government agency that supplies them does not consistently order
enough. In addition, some drugs have become harder to obtain because
problems with counterfeit chemotherapy drugs from India have led the
institute to stop buying from that country, which has been an important
supplier.
A number of women in Ms. Nakigudde’s group have been deserted by
husbands or boyfriends because they have cancer, she said, counting
herself among them. Some have been fired from work for taking time off
for treatment. It is not uncommon for women to try to keep 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 a witch.
Ms. Nakigudde said one of the biggest problems for breast cancer
patients is that the cancer institute does not yet offer surgery or
radiation, so women must seek those treatments at Mulago Hospital, which
is huge, disorganized and intimidating. Its radiation machine, the only
one in the country, is a rickety cobalt unit long past its prime. There
is such a demand for treatment — patients are referred here from Kenya,
Rwanda and South Sudan — that the machine is kept running night and
day.
Ms. Nakigudde and other group members have also tried to expose what
they describe as a culture of bribery that delays or denies treatment.
The hospital has two tiers: free, public wards 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 women who are supposed to receive free care but say they are being
pressured to pay surgeons and other hospital employees for everything
from being admitted to shortening the wait for surgery or radiation.
Her group has been working with a bioethics committee at Makerere
University (whose medical students train at Mulago) to find a way to
discipline doctors and end the demands for 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 any given day — 5,000 patients and
their relatives, and 2,000 employees.
“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 as hospital employees, something widely acknowledged to
occur. But hospital employees are not highly paid, and Mr. Kusasira said
some patients do not want to wait their turn and “lure these workers
into temptation.”
Ultimately, Ms. Nakigudde said, the best hope may lie in the continuing
expansion of the cancer institute, where bribery is not entrenched. Its
expansion cannot come too soon. Now, it is a cluster of one-story
tin-roof buildings with too many patients and not enough chemotherapy.
The tumor ward often has 35 patients for its 25 beds. In mid-July, a
half-dozen patients lay on mattresses on the floor, tucked wherever they
fit. Relatives slept on mats under the beds. Most of the patients had
advanced cancer, and some had come here to die.
The new hospital will bring the institute’s first operating rooms, and
administrators hope to add a radiation center. They also want to improve
its pathology labs so they can perform tests that will help determine
which treatments will best suit each patient. In addition, a new cancer
research center with another clinic is being built with money from
Uganda, the United States 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, the only ones in the country, are struggling
to keep up; each one might see 40 patients a day. A tent 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 our own success.”
What is needed ultimately, he said, is a nationwide cancer program
involving clinics in remote areas and a system to refer patients who
need specialized treatment to the cancer institute.
“My prayer,” Dr. Orem, 51, said, “is to see that by the time I retire,
there is a system in place, a safety net for cancer patients.”
Treatment Begins
A week after seeing the American doctors — who by now had gone home —
Ms. Namata traveled 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 of water and, because hospitals here do not provide
sheets or blankets, an enormous roll of bedding. 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 member of the group, Ms. Namata squeezed through the
crowded corridors.
The surgeon examined her but did not admit her, telling her instead to
return the following Monday for a mastectomy. Drug treatment would come
after the operation, he said, giving advice 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 constant pain before another surgeon finally examined her, only
to tell her, as the American doctors had, that it would be better for
her to take drugs to try to shrink the tumors before surgery because
they were so large that it would not be possible to close the wound. She
left the hospital frustrated and frightened, beginning to doubt that
she would survive.
But she made her way to the cancer institute, where she began receiving chemotherapy on Aug. 19.
Her hair, expertly braided by her daughter, is now gone. Her skin has
darkened, a common side effect of chemotherapy that African women find
particularly distressing, for aesthetic reasons, 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 don’t want to eat or drink.”
She calls Ms. Nakigudde just about every night for advice on what to eat, and reassurance that 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 for money, she borrows from
other people.
But the tumors seem to be shrinking. She no longer needs morphine. In a
few months, she hopes to have surgery. And she prays that she will live.
