Health awareness: a neglected women's rights issue?

By Camilla Caraccio

International Women's Initiative News Writer

“There's no worst disease than ignorance” - Cancer survivor

You may have seen it pretty much everywhere around you this month. Setting aside some criticism – above all the manipulation carried out by some cynical enterprises eager to look socially responsible – that ubiquitous pink ribbon is the epitome of an old 'health struggle' which has seen many socio-cultural barriers coming its way. As October – the Breast Cancer Awareness Month – comes to an end, it is important to discuss women's healthcare under a women's rights spotlight, and analyze how the trajectory has changed since the feminist movement was born.

We need to talk about how we talk about breast cancer

Breast cancer is the most common disease amongst women aged 20–59 years old. Statistics show that the incidence of the disease in Arab countries is actually less acute than in their counterparts of the Western world. By contrast, mortality rates related to breast cancer are here stubbornly higher than anywhere else. According to the World Health Organization, the high case-mortality ratio is largely caused by a peculiar interplay of socio-cultural beliefs and attitudes, hence the delayed diagnosis of the disease.

In terms of modern human rights law, many of women's health disadvantages can be classified as injustices. In fact, women's rights in the healthcare sector may be violated by the inadequacy of certain health services, the misusage of appropriate technology and – like in this case – the simple lack of information.

In Jordan, 900 women are diagnosed with breast cancer annually, making it the most common cancer amongst women in the Kingdom. Breast cancer is the most common cancer in females and it holds the highest percentage for most cancer cases in Jordan (around 20 per cent of all cancer cases). According to the national screening recommendations, women aged 50 years and older should have yearly mammograms in addition to a yearly clinical breast exam and a monthly self-breast exam. Secondly, women aged 40 years and older should have regular mammograms, once every two years, in addition to a yearly clinical breast exam and a monthly self-breast exam. Thirdly, women between the ages of 20 and 40 do not typically need screening mammograms unless they are at high risk (i.e. a strong family history of breast cancer). However, women 20 to 40 years of age should practice monthly self-breast exams and receive clinical breast exams at least once every three years.

Regular check-ups and screenings prove to be vitally important to root out the disease's catastrophic effect. The Jordan Breast Cancer Program was physically established in summer 2007 to develop a comprehensive plan for early detection aimed at improving availability and accessibility of screening services across Jordan, especially to those with low income and those living in remote areas with little access to healthcare services. To date, a mammogram can cost around JD 30, and screening costs are partially covered for underprivileged women. This is mainly because studies showed that the cost of some critical cancer tests such as a mammogram was the reason for not performing it.

However, the situation gets complicated in less developed areas, where gender discrimination and extreme poverty pose significant limitations to women's choice in terms of personal care. Myths surrounding cancer and taboos about their bodies persuade women residing in conservative societies to forgo prevention, fearing to be stereotyped and stigmatised by their families. At times, breast cancer – and cancer in broader terms – is even portrayed as a harbinger of death, or a kind of punishment for a promiscuous behavior inflicted by envy and witchcraft. Another survey conducted on a cohort of 13 Arab-American women has unveiled the pervasive misconceptions about the right to health. As a result, the vast majority of them have expressed the belief that a cancer diagnosis can impact negatively the family of an affected individual. This common concern often leads at-risk individuals to keep their cancer diagnosis secret or avoid seeking medical advice when symptoms of cancer are suspected. More alarmingly, women struggle disproportionately with the assumption that their husbands would hardly accept a physical change. One of the women interviewed said:

“When I knew it was cancer I was shocked. Why cancer? What is happening? Why is it happening to her, because that disease can happen to anybody but not to us. There is no knowledge about it. There is no education about it. No self-awareness. Nothing to check ourselves or any preventive knowledge about it.”

But the same myths and taboos, albeit entrenched in culture, aren't set in stone. Some of them have been systematically dispelled by modern advocacy over the years. To help Jordan reframe the breast cancer conversation, local organisations are raising their voices to promote the right to health as a fundamental human right. Resource campaigns, educational programs and similar initiatives have been playing a central role in shifting the public consciousness and promoting awareness as a weapon for developing future prevention.

One of those, named Nashmeyah in a Rosie Soul, is the effort of a husband who believes that women have an important role within their communities. With a great humanitarian goal in mind, the organization Jordan free of breast cancer, has organized a series of lectures to cover a variety of topics, such as breast cancer awareness and family planning, providing free transfers, clinical examination and consultation. “Women have the right to stay informed in order to feel protected and take the first steps in healing. We need to talk to them with assertiveness, love and compassion,” says founder of Nashmeyah Saif Aldeen Alkhatib Alzou'b, who also thinks that information can be considered the first cure. Similar initiatives are having a positive impact in reinforcing health literacy and teaching women the importance of timely informed decisions when it comes to cancer examinations. To the same extent, they are key determinants of new perspectives on cancer, far from widespread misleading beliefs.

Awareness on breast cancer is progressing astonishingly quickly in the West. In the Arab world, things are slowly but steadily catching up. Women in Jordan and in the rest of the region, it seems, are getting increasingly empowered in a way they don't feel abandoned in their private battle. That being said, information alone – however crucial - will not be enough. In fact, it won't do much good if women with improved awareness are unable to access health systems. It remains the fact that the provision of facilities and services isn't addressing everyone yet, especially those in hard-to-reach and low-resource areas. The responsibility for a fully accessible healthcare is in the hands of policy makers, healthcare practitioners, politicians, etc., who are to adopt appropriate legislative, administrative, budgetary, judicial, promotional and other measures to realize the right to health within an efficient medical landscape.