As out-of-pocket medical expenses soar, crowdfunding provides some respite 

When Jharna Begum (20) found out she was pregnant, she was over the moon about it. Both her and her husband, Mohammad Kalam, were eagerly waiting for the baby to come. 

Around seven months into the pregnancy, Jharna started to have breathing problems. The diagnosis in 2021 revealed that she had a hole in her heart and a narrow pulmonary artery, which was putting her life as well as her child's in danger. She required an open heart surgery, which costs Tk3 lakhs. 

For Kalam, a tea-stall owner in Gazipur, arranging this amount was not easy. Someone at his tea stall suggested that he contact Munir Foundation, a Facebook-based medical crowdfunding group which could help Kalam in arranging some of the money.  

"When Kalam contacted us, we studied his case and visited his house in Gazipur to see whether he was actually unable to pay for the treatment or not. When everything was verified, we created a fundraising campaign on Facebook. The surgery was scheduled on 17 January and we were able to hand over Tk1 lakh to Kalam," Secretary of the foundation Shariful Islam Siraji shared with us. 

Jharna is still admitted at the post-surgery recovery section in BSMMU (Bangabandhu Sheikh Mujib Medical University Hospital). The doctors said it would take two to three more weeks till she can go home.  

Kalam said, "We have been in the hospital for the last four months. My 14-month-old baby keeps crying for his mother. But we are grateful to everyone who has contributed to the surgery. Please pray for us so that we can go home soon."  

"In most of the cases, these people have no health insurance and no savings at all. Whenever there is any chronic medical emergency, people tend to sell their assets to arrange for the money"

Shariful Islam Siraji, secretary of Munir foundation, a Facebook-based medical crowdfunding group

Since they started in 2019, Munir Foundation has crowdfunded for 139 patients and raised more than one crore taka. Currently, it is handling multiple cases such as that of Inshar Tayib Inaya, who is diagnosed with Ewing sarcoma (a cancer of the bones and soft tissues) and going through treatment and that of Imrul Hasan Joshi, who is diagnosed with chronic kidney disease and needs money to have a kidney transplant.  

"In most of the cases, these people have no health insurance and no savings at all. Whenever there is any chronic medical emergency, people tend to sell their assets to arrange for the money," Shariful said.  

How a medical crowdfunding campaign is organised

According to Shariful, in Bangladesh, medical crowdfunding is not so organised yet. There are cases of fraudulence as well. 

So, at first, the foundation verifies the case and then organises the campaign on Facebook. He explained the process to us, "Anyone who needs such help contacts us on our Facebook page. We then communicate with the person, who is usually a relative of the patient. A Google form is then provided to her/him to collect information, such as the patient's name, home address, details about the disease, designation of the doctor/s they are visiting, affordability, annual income etc."

After this, an evaluation team is sent to the patient's area, who runs an investigation into whether the information provided by the patient is authentic or not. Then a Facebook-based campaign is organised. 

"In the beginning, it took us more time to collect money. It still takes time but now that a community of people know of us, we get more funds. Especially people who want to pay zakat or sadaqah, they choose us. It is a slow process, but we surely are growing," Shariful said. 

Not just on social media platforms, medical crowdfunding can be sourced through newspapers, and also organised from among personal acquaintances. 

In 2019, 10-month-old Ayat was diagnosed with a hole in his heart. Doctors in Barishal could not fix the problem and his father also could not keep up with the medical bills.  So, Ayat was brought to Dhaka in 2020. 

At that time, the baby's uncle asked for donations from Imroze, a Dhaka-based journalist, who arranged a crowdfunding campaign and published the campaign in a newspaper. It took Imroze three months to collect the required Tk3 lakhs for Ayat's surgery.

"Ayat is much better now after the surgery", said Imroze. Thanks to social media and MFS, collecting the money was not that hectic. 

"I approached my friends and family for donations, and gave them a bKash number where they could send the money. All I had to do was approach them with the idea. My friends and family trust me, so I didn't have to struggle much," he added.  

Like Jharna, Inaya or Ayat, a number of patients in Bangladesh ask for donations in Bangladesh as they cannot afford the treatment expenses. We often see young people carrying glass boxes and asking for donations at traffic signals, shopping malls, and on public buses. We see appeals for medical donations in newspapers all the time. 

Over the years, out-of-pocket medical expenses have increased in Bangladesh, putting lower and middle-income families in financial distress. 

According to the World Health Organisation (WHO),  Each year, 17 million people die from five noncommunicable diseases (NCDs), including heart disease, stroke, cancer, diabetes, and chronic lung disease before the age of 70. 86% of these premature deaths occur in low- and middle-income countries like Bangladesh. 

Increasing out-of-pocket medical expenses and reluctance to primary medical care

According to Bangladesh National Health Accounts 1997-20, Bangladeshis paid 62% of their total health expenditure out of their pockets in 2012. The same year, the authorities formulated the Health Care Financing Strategy or the Shasthyo Shurokhsha Karmasuchi under the Health Economics Unit (HEU) of the Ministry of Health and Family Welfare to reduce out-of-pocket health expenditure to 32% by 2032.

But,instead of coming down, the rate has increased with every passing year. In 2020, 69% of the total health expenditure in Bangladesh was paid out-of-pocket by treatment seekers.

And that's not the end of it. According to a report by the HEU, every year, some 16.4% of patients do not take healthcare services even though they need them, as out-of-pocket expenditure has continued to rise in the country.

The HEU says that patients spend 64% of their health expenses on drugs, while 23% is used for meeting hospital expenses (both indoors and outdoors) and 8% for diagnosis purposes.

On this, Dr Chowdhury H Ahsan, a Bangladeshi-American doctor who is the Chief of Medicine at University Medical Centre, Las Vegas said, "Reluctance to medical care at the primary level is a big reason why people get into critical conditions. At that stage the disease gets too complex and expensive."

And on top of that, the condition of our primary healthcare service is fragile. Dr Sharmin Mizan, deputy project director of the Urban Primary Health Care Services Centre project said, "The urban healthcare system of Bangladesh is largely run by NGO projects and these too aren't available in every ward and municipality."

Only 3% of patients receive medication from government hospitals and 14.9% obtain diagnostic services. Most patients have to buy medicine from private pharmacies and they also go to private diagnostic centres. This increases the out-of-pocket expenses of households, which is a big reason people tend to ignore primary symptoms, according to Dr Ahsan. 

He compared three healthcare systems around the world - the American health insurance-based system, the publicly funded British National Health Service (NHS), and the Bangladeshi healthcare system - which has neither. 

"The Bangladeshi government does not have a national healthcare system and health insurance is also not popular here. That's why the country's people are on their own, spending money out of their pockets for medical treatment," he said. 

Not having these systems are also the reasons behind the middle and lower income people selling their assets or asking for donations in case of a medical emergency. 

Another reason behind seeking donations is the high cost of treatment of chronic diseases.  Nur A Shafee Ahnaf, a cancer survivor and founder of the Leukemia and Lymphoma Society of Bangladesh, shared with us how expensive it is to get cancer treatment in Bangladesh. 

Shafee said, "PET scan (Positron Emission Tomography scan, popularly known as PET scan, is the primary scan that helps to locate cancer cells) is not available in most of the hospitals in Bangladesh and it costs Tk55,000 to Tk60,000, whereas in India, it costs around Rs10,000. Several chemotherapies are not available in the country. The chemo session that costs Rs7,000 in India, costs Tk20,000 to Tk25,000 in Bangladesh. No wonder people go bankrupt while treating chronic diseases in Bangladesh."   

Undoubtedly, a proper healthcare system like the Shasthyo Shurokhsha Karmasuchi is a must in a middle-income country like Bangladesh. 

But as long as that does not happen, experts suggest we work with whatever we have at the moment. Dr Zafrullah Chowdhury, founder of the rural healthcare organisation Gonoshasthaya Kendra, recommended three things. "Firstly, medicine prices have to be reduced. Secondly, the government will have to subsidise the five non communicable diseases (NCDs). For example, in our hospital, we provide one hemodialysis session at Tk1,000. But it costs us a minimum of Tk 2,500. Who will pay the rest of the Tk1,500?" 

Thirdly, public donations must be encouraged.  

Bidyanondo Foundation, a charity-based organisation in Bangladesh provides primary medical care to rural people, especially mothers and children. One of its volunteers, Dulal, said, "The donations we get for healthcare campaigns is less than 10% of what we get for the food or education campaigns."

According to him, although individual hospitals have their own donation boxes or medical campaigns, there is no particular organisation that crowdfunds for medical expenses.   

Organisations like Bidyanondo and Munir Foundation recommend developing the crowdfunding process.   

The black spot in the story

The story of Shabnam Mustafa shows how out-of-pocket medical expenses can turn into a financial disaster for a family. Shabnam has been suffering from kidney disease for the last five years. 

She is taking dialysis sessions at the government hospital in Tangail and needs Tk30 lakhs for her kidney transplant surgery- at least that's what the Prothom Alo news said.  

I contacted her husband Rahim Mustafa (pseudonym), he also confirmed that his wife Shabnam is ill and he is crowdfunding for her surgery.    

"Since the news got published in August 2022, we have already collected almost 50% of the required money and we are still collecting. Please do contribute some to the fund," Rahim requested us.

There was something in his voice that made me question his authenticity. I contacted our Tangail Correspondent to check on him, who informed me Shabnam died in November 2022. 

I called Rahim again and requested to talk to his wife. He cut the call and never received my call again.  

Zafar Ahmed, general secretary of the Tangail Press Club said, "Rahim owned a shop in Tangail and he is also involved in the cultural communities of Tangail. In the last five years, he lost everything - his shop, and all his money for his wife's treatment. Maybe that has turned him into a fraud."

In the pool of destitute patients, one Rahim Mustafa turned out to be a fraud. But thousands of Jharnas or Ayats are out there and people like Imrose come forward to help them all the time. That's how the spirit of medical crowdfunding works. Having said that, it also shows the imminent need for a proper healthcare system in Bangladesh.