Buruli ulcer is a tropical disease reported in about 30 countries, including Ghana, where doctors are this year predicting about 1,000 cases. Credit: Paul Carlucci/IPS

By Paul Carlucci, Henrietta Abayie, and - -
GREATAER ACCRA WEST DISTRICT, Ghana, Nov 24 2011 (IPS)

For the past 10 years, Buruli ulcer has been eating Benjamin Essel’s leg. The skin above his ankle is totally gone, and a swollen, pulpy and reddish wound rises almost up to his knee and wraps around his calf. Even still, this is an improvement over recent years.

Buruli ulcer is a tropical disease reported in about 30 countries, including Ghana, where doctors are this year predicting about 1,000 cases. Credit: Paul Carlucci/IPS

Buruli ulcer is a tropical disease reported in about 30 countries, including Ghana, where doctors are this year predicting about 1,000 cases. Medical professionals say it is little known in afflicted communities and among staff at local hospitals, even though its early stages are easy to treat. It occurs in wet, rustic areas, and, consequently, its victims tend to be the rural poor.

Researchers know that it is caused by mycobacterium ulcerans, the same thing that causes leprosy and tuberculosis, but they are not sure how it is transmitted, which makes prevention very difficult.

Catching and curbing the disease in its early stages inevitably leads to full recovery with medication like antibiotics, but poverty, ignorance, spiritual beliefs, and underfunded health facilities conspire to stall treatment.

About 50 to 60 percent of this West African country’s victims end up with lesions like Essel’s or larger.

Disfiguration, disability, and amputation are common outcomes. Doctors and nurses are calling for more resources to educate endemic communities and train local health care providers.

“This disease affects rural poor, whose voices are not heard anywhere,” says Dr. Edwin Ampadu, the country’s national Buruli ulcer chief. “The public has very little knowledge about this. When we had opportunities to bring this to the media or TV, people shied away. That is very sad, because when you talk to people, they think the disease is far away. But it is very close to this place.”

According to the World Health Organization (WHO), Buruli first surfaced in Uganda in 1897. Fifty years later, Australian researchers provided the first full description of the disease, and, in 1960, a rash of cases broke out in Buruli County, Uganda, giving the disease its modern handle.

Since 1980, it has spread across West Africa, and, in 1998, WHO began addressing it on a global scale. The disease is present in 30 African countries, as well as the Americas, Asia, and the Western Pacific. In Ghana, there have been 11,000 cases recorded since 1993.

Buruli comes in four progressive stages: nodule, plaque, oedema, and ulcer. The first stage is just a lump in the skin, while the fourth phase can produce wounds several times as dramatic as Essel’s.

While prevention remains a puzzle – some researchers in Australia think the disease may be transmitted by mosquitoes – early treatment could not be easier. According to a 2003 survey, all it takes is 20 to 50 dollars worth of antibiotics. On the other end of the treatment spectrum is a price tag of nearly 1,000 dollars, not to mention the social fallout from that degree of illness.

“Education is ongoing,” says Martin Oppong, the Buruli ulcer programme coordinator for the Ga West District, where Amasaman Hospital is located. “But it’s a disease that no one can pinpoint as to the mode of transmission, so people’s perception as to the cause determines where they seek help.”

Some, like 50-year-old Ama Foa, think they have been cursed. Others, like 50-year-old Victoria Oppong, think it is a boil. Like Essel, both women let the disease progress before getting treatment. Now none of the three can work, and Essel and Victoria Oppong live in the ward.

Ghana’s National Buruli Ulcer Control Programme was struck in 2002, almost 30 years after the disease was first detected in the coastal province of Greater Accra Region. But doctors complain that it is grossly underfunded.

Amasaman Hospital’s ward exists mostly with the help of World Vision, the Christian relief, development and advocacy non-governmental organisation. In 2005, World Vision introduced a three-year programme to help with dressings, surgery, drugs, and general care, all of which are allocated from the government, but only every four months, and not in sufficient quantities.

World Vision also helps feed patients, who would otherwise have to fend for themselves, as the hospital does not pay for food. In 2008, the NGO renewed the programme. This September, it expired.

“Maybe they will renew,” says Oppong. “Maybe they won’t.”

Meanwhile, Ampadu is trying to build capacity in other endemic jurisdictions. He wants to train more local health care providers on detection, so the disease can be caught and stopped in its early stages. He also wants to build surgical capacity, so doctors can perform skin grafts and other surgeries with minimal damage to the patient.

So far, capacity is spotty. While Amasaman has one doctor who can assist in operations with the guidance of a surgeon from Korle Bu Teaching Hospital, one of the country’s central medical facilities, larger places like Nsawam in Eastern Region have no one. Ampadu chalks this up to professional interest.

“The gaps are many in terms of capacity building,” he says. “We have very few doctors who have shown serious interest. The cases are not many if you compare to tropical diseases.”

And then there are the financial limitations. Ampadu frames the whole thing as an issue of corporate responsibility. As it happens, many of the afflicted rural areas are also hotspots for Ghanaian industries like farming and mining. He’s calling on more companies to provide funds for education and outreach so the disease can increasingly be stopped in its early stages, which is currently the closest thing to prevention available. It should be an easy fix.

“If we invest seriously in early prevention,” he says, “maybe in three years time I can assume that we will not see this ugly lesion.”

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By Paul Carlucci and Henrietta Abayie
ACCRA, Oct 26 2011 (IPS)

Mary Mingle thought she had a boil on her breast, so she bought some medication and tried to treat it at home. Two months later, bothered by persistent pain, she went to the doctor.

Mary Mingle has kept her double mastectomy secret for 20 years, due to fear of stigma. Credit: Paul Carlucci/IPS

There were eleven lumps in her breasts. She had first stage cancer, and her breasts, along with her uterus, would have to be removed.

“The doctor encouraged me,” she says. “The earlier I got them removed, the better. Otherwise, I would lose my life.”

Now, years after her surgery, only five people in her personal life know about her double mastectomy: her three children, her sister, and her husband. She’s been carrying her secret for about 20 years, hiding it from her extended family with a padded bra because she is afraid she will be stigmatised. She also hides it from her church, for the same reason.

“I don’t want them to be aware,” she says, her voice a tiny whisper.

Health officials in Ghana say breast cancer is a growing problem compounded by untrained medical practitioners, a lack of equipment, and unhealthy, sometimes fatal, cultural beliefs.

Historically, breast cancer has received scant attention in this West African country. International donors and institutions have been focused on communicable diseases like malaria and HIV/AIDS. Despite the fact that, according to Ghana Health Services (GHS), non-communicable diseases are the leading causes of death.

“It’s only now that attention is being drawn to it,” says Dr. Kofi Nyarko, head of the GHS cancer control programme.

There aren’t any solid statistics yet. In the capital of Accra, the Korle Bu Teaching Hospital, one of two full service cancer facilities in the country, is building an in-hospital registry of cases. In Kumasi, the country’s second biggest city in Ashanti Region, Komfo Anokye Teaching Hospital is also working on a database.

According to Dr. Verne Vanderpuye, a clinical oncologist at Korle Bu, the hospital gets about 3,000 breast cancer referrals a year.

“The main problem is that people don’t come early,” she says. “In an untreated case, when it’s moved beyond the breast, the average lifespan is one-and-a-half to two years. It will move from the breast, to the lymphs, to the lungs, to the liver, to the bones, and to the brain.”

Nyarko says the hospitals have gathered enough information for officials to know that breast cancer is becoming more prevalent, and its victims are younger and younger.

“It’s no longer a disease for the old,” he adds.

About three years ago, a focus on non-communicable disease began to take shape. In 2008, in collaboration with the World Health Organization (WHO), the Ministry of Health set up a national Cancer Steering Committee. The following year, Nyarko became the government’s cancer chief.

Working with WHO, GHS has identified cost effective treatment and detection strategies. Radiology equipment is scarce in Ghana – there are 10 mammogram machines in the whole country, six of which are in private institutions – so there will be a focus on clinical examinations, with mammograms for follow ups. It is a strategy that will require training.

“You need human resources,” Nyarko says. “You need infrastructure. You need certain equipment in place. You need all these things and money for training. The fact that you are a doctor or you are a nurse does not mean you can examine someone and say, ‘You are free (of cancer).’ You need to be trained.”

Nyarko expects a comprehensive national strategy will be launched by the end of the year. In addition to increased clinical examinations, the government would also like to build a full service hospital in Tamale, the biggest city in Ghana’s relatively undeveloped Northern Region.

There is also a big emphasis on prevention and awareness, with a series of posters and leaflets produced in partnership with the Geneva-based Union for International Cancer Control. Aside from promoting exercise and fresh food diets, the campaign is also meant to chip away at Ghana’s cultural oppression of breast cancer victims.

“People think that cancer is a call to death, but we are telling them that cancer can be cured,” Nyarko says. “We are aware that awareness is very low, even amongst the social elite. So we are working on that.”

It is not uncommon for victims to be shunned by their husbands or families. And in a country where women do a good deal of work, both around the house and in markets, husbands are reluctant to lose their wives to months of treatment.

Furthermore, chemotherapy is not covered by health insurance and can cost almost 2,000 dollars in just two weeks.

According to the World Bank, Ghana’s 24 million people live on an average of 1,283 dollars a year. The Jubilee oil find in the country’s Western Region is expected to help push GDP growth to 13.4 per cent in 2011, but there is no guarantee that will influence the average annual income.

“There’s also the fact that you could lose your breast,” says Vanderpuye. “We have a polygamous society, whether we like it or not. They might say you are not a whole woman.”

Like many African countries, Ghana is hugely religious. Many pastors tell their flocks that cancer is a spiritual illness, and that the answer is prayer, not surgery. As a result, some women do not go to the hospital until the tumours have spread. And then they die.

“They say the surgery kills, but they wait so long that the cancer spreads, so it appears surgery kills,” says Gladys Boateng, a breast cancer survivor and the founder of Reach for Recovery.

Civil society groups like Reach for Recovery also play a role in spreading awareness. Formed after Boateng survived her own bout with breast cancer, the group has reached 3,000 sufferers in the past eight years. Survivors give back to the group, visiting women in hospitals and helping with screening missions in remote or rural areas.

But even advocates keep secrets. Boateng will not discuss her husband’s reaction to her ordeal. She just offers a tight smile and declines comment. Nyarko, who has been watching international dollars lean heavily toward infectious diseases, is predicting a continued sea change in donor awareness. He is ready – all he needs are resources.

“It’s just now that there’s an emphasis on non-communicable diseases,” he stresses. “You know the right thing to do. You know the right thing to say. But you do not have the resources.”

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