In Ghana, Stigma Stymies Breast Cancer Prevention

Inter Press Service (IPS), by Paul Carlucci and Henrietta Abayie

(Ghana) — 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. 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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HIV: When They Need it Most, Just Embrace, Do Not Reject

By K. Amponsah-Manager

In an earlier article, I told you a story with the title “I Was Shocked When I Was Told I Have HIV”. Please remember to read that if you missed it.

HIV and Stigma:

We have lived with HIV for nearly 30 years, ever since the illness first came to light in the early 1980s, but the cultural attitudes that drive most of the stereotypes do not seem to be going any where. Globally, it estimated that 7,400 people are infected every day with HIV, a significant proportion of this in Africa.

Stigmatization of HIV rooted in cultural and religious attitudes is perhaps sending as many people to their graves as the condition itself.

Stigmatization may be defined as severe social disapproval of personal characteristics or beliefs that are perceived to be against cultural norms. With regard to HIV stigma is portrayed in prejudice, negative attitudes, abuse and maltreatment directed at people living with HIV and AIDS. In some cases, people with HIV are ostracized by direct family members and the wider community. Even healthcare and education facilities may discriminate in offering service to such people.

Causes of HIV Stigma:

The causes for these established stigmas are widespread ranging from religious and cultural beliefs and expectations and mere misinformation. Personally, the first time I heard about HIV was around 1986 and it was in a church. The Ministry of Health had sent out a team of nurses and Para-medics to tour rural communities in Ghana to educate them on the newcomer HIV. In fact Churches and Mosques were the easiest and cheapest places to get the message across.  I was young then, but looking back I am embarrassed by how much misinformation we were fed. And I do not blame the messengers for what they told us. In fact, the world knew very little at that time. Since then much has been learnt about what is and what is not about HIV and AIDS. Some societies have moved quickly in using the available information to undo some of the damage done by the earlier misinformation; other societies are yet to begin the process. This is true of several African communities.

It is sad to say that some communities in Africa still hold the belief that shaking hands, drinking from a cup or eating from a bowl that has been used by a person with HIV, and in extreme cases using a chair previously used by an HIV carrier, will all result in contracting the virus. Again, HIV is normally associated with behaviors that are shunned by society. These include prostitution, drugs, homosexuality, and infidelity. In fact, in some communities, HIV, prostitution and promiscuity are synonyms. HIV was first identified in young gay men in New York and this is always used to tie the illness to the practice of homosexuality. When viewed from the religious perspective, the stigma is even justified since HIV is seen as a punishment for deviant behaviors.

Unfortunately, stigmatization hurts all of us: the patient, the family, and the community as a whole. Early detection is vital to managing the HIV condition but fear of stigmatization makes it difficult for people to go for check up and testing services even when there is reason to believe that something may not be right. The fear of stigmatization holds 1000s of people from accessing care even when it is available to them for free. A sizable proportion of our natural resources is spent in HIV treatment and campaign. We expect to move forward but stigmas and myths continue to be impediment.

The United Nations Secretary General Ban Ki Moon once said

“Stigma remains the single most important barrier to public action. It is a main reason why too many people are afraid to see a doctor to determine whether they have the disease, or to seek treatment if so. It helps make AIDS the silent killer, because people fear the social disgrace of speaking about it, or taking easily available precautions. Stigma is a chief reason why the AIDS epidemic continues to devastate societies around the world.” I couldn’t agree with him any more. 

HIV stigma is not a problem with developing nation alone. Even in a developed world such as the US, stigma associated with HIV prevails. HIV is a new disease compared to malaria, TB, and syphilis but at it is least 25 years old. It is about time that we work our way out of the stigmas associated with the condition and help ourselves, our families and society.

The person living with the HIV virus is a sister, brother, father, mother, teacher and an entertainer. He or she is not just the ‘HIV Patient’. What a different it would make if it was that easy to accept that.

Thanks for reading.

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