Barely does Zaheera Begum* begin to recount her experience in getting treatment for breast cancer when three other women sit down and interrupt her — to narrate their difficulties in getting cancer treatment for themselves or their loved ones.

“I am getting expensive chemotherapy medicine, it’s ₹30,000 each shot. And I have 13 more to take. My husband is trying to get money from the village, we are borrowing from here, and we have sold some land at home (Patna),” says Zaheera, her eyes welling up.

Hair cropped short and wearing a nightdress, Zaheera sits on a straw mat on the pavement outside Mumbai’s Tata Memorial Hospital. Her modest belongings include plastic packets with her clothes and a stove with which she and her son try to cook. “The cancer has come back,” says Zaheera’s son and they have been living on the pavement for over 10 months now, even through the monsoon.

Paying for the medical treatment is difficult as trusts, which lend money, “don’t give you money more than once. And cancer requires continuous treatment,” he says. But what about State or Central government insurance schemes? “It takes time for money to come from Ayushman Bharat and we need the money to start treatment now. All our money has been exhausted,” he says, harassed at running pillar to post.

Any time of the day, week or year, this is the ground reality — and at just one hospital. Patients come from across the country, drawn by the hospital’s treatment reputation and the hope of getting some financial assistance. The other women who joined the conversation with Zaheera come from Jhansi, Kolkata and Kanpur. And while two of the women have uterus and breast cancer, respectively, the third woman’s 12-year-old son has a malignant growth in his leg.

“My husband is no more and I don’t have the money,” she says, pulling out a small bottle of Hajmola digestive bought at her son’s request, but on borrowed money. “People tell me to approach Salman Khan’s Trust for help, but I won’t be able to get to him as he will have two bodyguards,” she says, opening a small steel tiffinbox to show the dhal that she requested someone to cook for her son who was in hospital for a blood transfusion.

The situation is not very different across the country as affordability remains a major stumbling block for patients, be it in buying medicines or in getting treatment at hospitals, private or government-aided — a situation made worse by public health spending (Centre and States) being pegged at 1.4 per cent of GDP.

In its statement, the Government explains, “(the) 71st Round of National Sample Survey Organization has found 85.9% of rural households and 82% of urban households have no access to healthcare insurance/assurance. More than 17% of Indian population spend at least 10% of household budgets for health services. Catastrophic healthcare related expenditure pushes families into debt, more than 24% households in rural India and 18% population in urban area have met their healthcare expenses through some sort of borrowings.”

To address this, the Centre has begun to roll out Ayushman Bharat, a revitalised version of an earlier universal health insurance proposal. There have been other piecemeal efforts, too, aimed at affordability. Slashing the hefty margins on medical devices like cardiac stents (used to remove heart blockages), by the National Pharmaceutical Pricing Authority, was one such. In fact, the NPPA controls medicine prices but its very survival is often under threat from Government think-tanks.

A recent Competition Commission of India report on affordability stated that 50 to 65 per cent of Indians did not have regular access to essential medicines. And this, despite over 40 per cent of the Indian pharmaceutical industry’s $33-billion worth of drugs being exported.

Pointing to the large out-of-pocket payments made by patients on medical bills, the report says, “a significant proportion” of it was spent on medicines. “Thus, ensuring affordable drugs is a necessary pre-requisite for bringing down the overall healthcare expenses and to achieve the overall goal of affordable healthcare for all,” the report says, elaborating on the multiple issues plaguing healthcare, including inflated trade margins and the quality of medicines. The report cites public procurement as a solution, but its present levels are insignificant. Apart from trade margins, manufacturing margins can also be excessive. And it is against this dire backdrop that financial models like medical loans and crowdfunding are emerging in an attempt to address the needs of the “unbankable” and make the system more inclusive.

Inclusive financing

“A financial inclusion programme is important,” says Arogya Finance (AF) co-founder Jose Peter, referring to the large out-of-pocket payments by patients. AF assesses a patient/family’s integrity and intention to repay loans through a psychometric test. Once convinced, AF pays the hospital directly and the payment is recovered from the patient/family in instalments. The repayments are structured based on the income of the patient-family so they are not overwhelmed by the schedule.

Other financing alternatives include Bajaj Finserv, which funds elective or non-emergency procedures, and then there are the crowdfunding options that help raise funds for expensive medical treatment through social media. Unrelated contributors pay any amount to collectively fund a particular patient or treatment. “We try to help the unbankable patient,” says Peter. But AF is changing to also include procedures like bariatric surgery, dental costs and fertility treatments, he says. “Those who can pay can help keep the project sustainable,” he says, adding that a large project involving hospitals in South India is to take off in December.

Even a non-cosmetic dental procedure, for example, is not covered by health insurance, points out Peter, adding that AF is looking to get about 40 per cent of its portfolio from elective procedures. The middle class is the worst off, he says, as it falls between the really poor (taken care of by the Government and non-government organisations) and the uber rich. The challenge is that “people are comfortable borrowing against an asset and not for an expenditure,” he observes.

Vishal Bali, who has headed hospital chains like Wockhardt and Fortis, says, “the conversation has to shift from pricing to sustainability and viability. That is the linchpin.” Pointing out that “government schemes are under-funded,” Bali adds, “You need to have a sustainable model, or it will die.” Bali is Executive Chairman, Asia Healthcare Holding.

Crowdfunding organisation Milaap found that not only was crowdfunding the option largely tapped to raise funds for healthcare but in that too, a large part was for tertiary care in super speciality hospitals, says co-founder Anoj Vishwanathan. “We have seen the need run up from a couple of lakhs to ₹40-50 lakh,” he says, and it’s not just for cancer treatment but organ transplant, paediatric intensive care, etc.

He recalls how a 28-week baby weighing just 550 gm required an intensive three-month stay in a Hyderabad-based hospital. The family spent about ₹20 lakh and the money was raised through crowdfunding.

When they collated data on their fund-raising patterns, it revealed that they served a massive need in paediatric liver transplants, bone marrow transplants, etc, Viswanathan says. Paediatricians peg India’s paediatric liver transplant needs at about 4,000 a year and only 250 get it. “Our data shows that 130 people raised funds for paediatric liver transplants.”

A similar experience was seen with bone marrow transplant, he says, where annual data showed that they raised funds for almost half the number of patients who went in for it. “When patients exhaust their savings and health insurance and still have to pay, they have nowhere to go,” he says, and “that’s where crowdfunding comes in.”

Not discriminatory

Outlining the benefits of crowdfunding, Viswanathan says, “our site is not discriminatory.” It does not assess an individual’s credit worthiness or ability to pay back like a lending company, nor does it stay away from pre-existing illnesses or senior citizens like health insurance does. “The need should be authentic, it does not matter which social segment you come from,” he says.

Addressing the “fatigue” that could set in among donors, Milaap is looking to rework the “giving” proposition from a “charity approach” to being more “community driven” — a payment where the donor knows that he/she too could benefit from the option, should the need arise.

The real success of these public and privately driven health financing models, though, will depend on how they evolve to include more people across the country. More people like Zaheera. An inclusive solution that does not discriminate against social strata, credit worthiness, ageing populations or pre-existing illnesses. That will be the test of their success.

*name changed to protect privacy