Parul Begum – a woman from Rangpur – passed away from cancer two years ago, leaving behind a grieving family who lost almost all of their business and land property in bearing the cost of her treatment.
Parul's ordeal began back in 2013, when a severe pain in her abdomen led to the discovery of a tumour in her ovary at a private hospital in Rangpur.
The then 52-year-old underwent surgery for the removal of the unwanted lump of tissue, and a subsequent examination confirmed that it was malignant.
With their lives upended, Parul's family members sought to learn what could be done to save their beloved person, but the hospital seemed to have no clear suggestions. For the sake of her treatment, Parul's family uprooted themselves and moved to the capital.
The next five years were an agonizing period of worry, confusion or frustration which robbed them of most of their time.
Parul's son Bazlur Rahman thinks that a lack of awareness among them and guidelines from the doctors were what pushed them into the spell of emotions falling into disarray, and all they could do was to search for light at the end of the tunnel.
The World Cancer Report 2020 has predicted that the global cancer burden will reach 29 million new cases per year by 2040, a 62% increase on the estimated 18.1 million cancers in 2018, foreshadowing a very grim reality in the coming days.
The burden will be the greatest in countries which score poorly in terms of human development; and Bangladesh ranked 135th among 189 countries on the human development index last year.
Meanwhile, the International Agency for Research on Cancer (IARC) has projected that among all deaths, those from cancer in Bangladesh will go up from 7.5% in 2005 to 13% in 2030.
That means that many patients such as Parul and their families will live through similar circumstances in Bangladesh due to the absence of a well laid-out healthcare system for cancer treatment.
The pandemic has only made things worse, as resources were diverted to the treatment of Covid-19. People were discouraged from coming to hospitals for diagnosis and treatment during the two-month shutdown and immediately afterwards.
But now experts think that any further delay in cancer screening, diagnosis and treatment will cause irreversible damage to many lives and raise the economic burden of the disease.
No effective national strategy
A decade has elapsed since the Directorate General of Health Services (DGHS) formulated the National Cancer Control Strategy and Plan of Action 2009-2015 against the backdrop of the looming threat of cancer.
However, the government has yet to take the initiative to implement the strategy, let alone update it, said Habibullah Talukder, who was a member of the taskforce to develop the strategy.
Its purpose was to "reduce the incidence and impact of cancer."
According to the Bangladesh Bureau of Statistics (BBS), cancer prevalence per 1,000 population increased from 0.6 in 2012 to 0.71 just two years later.
While countries like Bangladesh are not equipped to deal with the increasing economic burden of cancer, experts point out that government investment toward putting in place a proper referral mechanism, awareness campaigns, screening and early diagnosis could reduce the loss of lives and money significantly.
Limitations of cancer control programme
The most effective way to keep cancer at bay is to screen people for diagnosis even before any symptoms appear. Another controlling mechanism is early diagnosis to identify cancer as soon as symptoms develop and when it is restricted to an organ of the body.
Although screening for many cancers are highly expensive because of the high technology involved, the World Health Organisation has put forth the plausibility of screening for three cancers – breast, cervical and oral – even in less developed countries such as Bangladesh.
The government introduced a cervical cancer screening programme in 2005. An analysis of the data of the programme itself points out that it failed to ensure a wide coverage.
The BBS data estimated the number of women – those between the ages of 30 and 60 years targeted for screening – at 32 million. Every woman was supposed to undergo screening every five years. Thus, in 10 years' time they should have got the service twice.
However, only 2.4 million women have so far been screened. They account for only 7% of the targeted women population, and about 4.5% of them were found positive when tested for cervical cancer.
At the onset of the pandemic, the pace of the programme slowed, indeed came to a stop for more than three months from the end of March through June.
Now the number of women who come to 464 district-level screening centres and 271 upazila centres comprises only one-tenth of what it was before the pandemic.
"We are now encouraging women to come for screening [for both breast and cervical cancer]. But there is no publicity [of the programme]," said Prof Ashrafunnesa, who serves as the project director.
"Earlier, we told the information ministry and other authorities concerned about promoting the project through drama, television channels and other mediums, but no one paid any heed," she added.
In a situation like this, healthcare providers, who received training on running the programme, have been transferred to other departments, another reason Ashrafunnesa cited as to why the programme has so far been from reaching its target.
According to Habibullah, health workers have to disseminate the message, adding, "Even if a person does not have any symptom, she can save herself from a disease like cancer that may strike her in the future."
Community healthcare centres can play a role here, he said.
No programme has materialised either for early diagnosis. There is no referral system guiding patients to a healthcare facility where they would get the services they need. Patients find themselves depending on their own judgments or their families' amid confusion.
In Parul's case, her son Bazlur said the family, from a village in Rangpur, had run from one facility to another, flew to India and back because "there was no guidance."
Even oncologists were giving different kinds of advice, which happened because, as a doctor working at a multinational biotech company said, Bangladesh has not yet formulated a national protocol to treat cancer patients.
The situation has to change if the nation wants to rein in the cancer menace from harming the economy.
Data from the National Institute of Cancer Research & Hospital (NICRH) find most cancer patients to be between 40 and 60 years when they are supposed to be in the prime of their working life. Instead, they become a burden on their families.
Unavailability of data
The first step in the control mechanism is a cancer registry that would help understand the types of cancer that are more prevalent than others among citizens, as well as mortality and survival rates. The understanding in turn will drive policies into tackling the disease.
But several attempts by the government to keep records of cancer patients were discontinued.
In the latest initiative, the NICRH in the capital maintained a registry of patients between 2005 and 2014. The records were hospital-based, meaning the information was limited to the healthcare received by patients at the NICRH.
But the function of a cancer registry should be expanded to include follow-up treatments and the outcomes, shedding light on whether a patient survived after treatment. If yes, then for how long, and if the patient died, then how much time did he have before death.
It is one thing that the data-keeping system could not be stretched to reach the targeted observation. It is quite another that the work has been stopped altogether.
Habibullah, an associate professor of Cancer Epidemiology at the cancer institute, said his department could not continue the effort due to a lack of cooperation from healthcare providers of other departments at the facility.
Officials of the NICRH referred to the 2014 data as the most recent.
Meanwhile, a separate project was taken up around a couple of years ago to register women between 30 and 60 years with breast and cervical cancers. It is in the pilot phase running in 200 upazilas, and has registered 2.5 lakh women so far.
The NICRH data corroborated the cancer threat, depicting an increasing trend. From the records, lung, breast and cervical cancers emerged as the top three cancers.
Of cancer patients, at least one-third could keep the disease away only by taking preventive measures, for example, refraining from smoking, and not using solid fuels [such as coal] for cooking, which emit smoke when burnt. Smoke is a major cause of lung cancer.