Atlantic Fellows for Health Equity brings together health professionals from around the world and across disciplines to build leaders, combat disparities and create community. Its mission is to develop global leaders who not only understand the roots of health inequities but also have the skills and courage to create more equitable organizations and communities.
Each year, fellows share their reflections through Equity Talks — short presentations that highlight their leadership journey and learning during the fellowship. We are proud to bring some of these insights to the BMJ Leader Blog audience.
The blog below was written by Salima Khowaja, a 2024 Atlantic Fellow for Health Equity.
To watch the recording of this talk, click here
Sufyan, A 9-year-old skinny boy, resident of rural Punjab in Pakistan; lying on the lap of his mother, tightly holding his mother’s long scarf. He was hit by his teacher on the face. After a few days, his mother noticed a lump under his ear. She thought that the lump was the result of the slap by his teacher.
The child developed fever, and his mother tried treating him by self-medicating him at home for a week. When it was unresolved, she took him to the nearby practitioner which she was not aware whether he was licensed or unlicensed. The practitioner prescribed him antipyretics and antibiotics. The mother gave the child the prescribed medicines, and the fever settled down.
They moved on until he again developed fever, and his mother took him to the same practitioner for further treatment. The practitioner kept prescribing antibiotics and antipyretics to settle down the fever until some of her relatives told them about a specialized cancer center in the main city. Sufyan and his mother went, and the specialized doctor gave him a couple of tests. Sufyan was eventually diagnosed with 3rd-stage Hodgkin lymphoma.
There are so many children like Sufyan who went undiagnosed due to lack of literacy among people living in rural parts of Pakistan and who have no support to help them navigate through the health systems.
Another story is of Zaika, a 30-year-old lean women resident of rural area of Pakistan, who was living in the main city just to earn her living with her three young daughters and her husband who was earning daily wages.
One day, she noticed few small lumps in her neck. She discussed with me, and I referred her to the specialized healthcare facility. Despite having a specialized cancer hospital across the road, she chose to go to public hospital because she could not afford the private healthcare facility. She had to get permission from her husband to go to the hospital and get checked there, as she was aware that she might get her salary cut due to one-day off from her work. She got her biopsy done but then before she could even recover, she moved to her village with her kids and never returned back to follow her biopsy reports. There was no one in her family to support her to seek the treatment.
In our patriarchal society, a woman cannot even fight for their survival. She cannot stand for her own human right to stay healthy. Despite breast cancer being prevalent in our country, accounting for almost 25% of all cancers, a woman in our society is not even allowed to get exposed in front of doctors for her breast examination and some health care facilities do not have female practitioners available. Women do not even feel comfortable enough to talk with anyone about the symptoms they experience. On top of it, if her husband comes to know about her diagnosis, it is pretty convenient for him to replace her with another wife, leaving her on her own with her caregiving responsibility while struggling with the devastating disease.
I still remember a sad face with eyes looking down, tears trickling down the face while she was sharing her story with me. She was one of my patients who was diagnosed with breast cancer, her husband married with another woman just because she was unable to satisfy her husband during her treatment course due to the side effects of the chemotherapy.
According to the International Agency for Research on Cancer, in the year 2022, there were 20 million new cancer cases and 9·7 million deaths globally. In Pakistan, unfortunately we do not have a cancer registry, so there is no accurate data available around cancer estimates. However, according to WHO estimates, every year in Pakistan, more than 170, 000 individuals are diagnosed with cancer and more than around 100,000 lose their lives, contributing to around 4,371 life years lost. Despite available advancement in the treatment, disparities exist in the health outcomes across the cancer care continuum.
In high-income countries, where comprehensive treatment services are available and accessible, more than 80% of children with cancer are cured and survive. In contrast, in lower- and middle-income countries (LMICs), only less than 30% children with cancer are cured. This is because very few (30%) lower income countries have the treatment medicines available to serve these patients as compared to 96% of the high-income countries as their counterpart.
According to recent evidence, around 50 to 60% women in Pakistan are diagnosed with breast cancer at 3rd or 4th stage, particularly in rural areas where there is low level of health literacy and where the people have limited access to specialized health care facilities, (for which they need to travel miles and miles from their residence). Women do not have decision-making power and rely on the male member of the family to take her to the healthcare facility and bear the cost of her treatment.
Evidence suggests that people with low income and low health literacy level, those lacking the health insurance coverage or having long travel distances to screening or treatment facilities are significantly less likely to get their screening done or finish their treatment.
Not only this, but there are few hospitals that only accept patients diagnosed at earlier stages or younger patients in order to allocate the limited resources to those having high probability of survival.
Though in Pakistan we lack the data, the global narrative is familiar, and the gap is even wider.
It is difficult to access screening facilities for the people living in rural areas as these facilities are more centered in big cities and comprehensive screening services, particularly for breast and cervical cancers are not integrated in primary healthcare system.
Despite WHO’s global strategy for cervical cancer elimination, there are a number of countries that do not have the HPV vaccines available for the generation to come. In Pakistan, cervical cancer is the 4th most common cancer among women. Still, the HPV vaccine is not readily accessible. Lung cancer caused by smoking is highly preventable, yet smokers have scarce resources to seek cessation.
I am an oncology nurse educator and an equity leader. I have witnessed lots of untold stories at my work. But I have also experienced cancer personally. My father got diagnosed with prostate cancer which moved us emotionally as a family though we managed to fight back. Not all the patients, not all the families manage to do so. Not all the fathers have a nurse or a physician daughter or a son who can standby themselves.
My work centers around advocacy and increasing health literacy cancer prevention, among those who really need it most; through innovative tools and by engaging them so they take the ownership of their own health.
People living with disability find it even harder to navigate through cancer care, and to access the healthcare information materials. There is a crucial need to include them in the designing of health information packages in order to make them more accessible for them.
We all might belong to different parts of the world, but inequities are central, suffering is global.
But the question here is: Is it fair? Is it right? Is it acceptable?
Suffering is inevitable, but survival is not. It’s a choice to make. Inequities exist as societies aren’t fair. But it can be fixed if we truly will it. Change is gradual and difficult, but it needs the right time, right tools, right skills and right people to engage with. Changing deep down mental attitudes and mindsets can bring change to the surface where the inequities actually exist.
There is a need for fairer treatment for the cancer patients wherever the patient belongs to and regardless of his or her ability to pay. Hospital administrators need to ensure the fair and equitable treatment at the facility. Government stakeholders who have power to make things accessible should make fairer and equitable policies and play their role in environment change to address the social determinants leading to existing disparities in cancer care. There is need to continue researching for advanced yet cost effective treatment.
*Names of patients have been changed to keep their information confidential.
Author
Salima Khowaja is a nurse, an epidemiologist and public health specialist in Lahore, Pakistan. Her work focuses on improving nursing education and health equity and advocating for cancer prevention. She is a Senior Atlantic Fellow for Health Equity.
Declaration of interests
I have read and understood the BMJ Group policy on declaration of interests and declare the following interests: none.