Falling Through the Gaps: Women Accessing Care under Health Insurance Schemes in Karnataka

Exclusion because Condition Is Not Covered or the Patient Is Too Ill

In one of the camps organised, more than 50 per cent of 88 patients visiting were excluded because their condition was not covered under the scheme. Among them was a 60-year-old widow who was visiting the camp seeking treatment for her son who had suffered a stroke two years ago. When she heard that the camp provided treatment for ‘nerve-related’ problems, she had been hopeful. During her visit, she was told that stroke is not covered under this scheme as the treatment does not involve surgery. She was not offered any alternative source of treatment.

In fact, the elderly woman raised a valid and important issue about the rationale of including only surgical procedures under the scheme. For instance, why were conditions such as stroke, that need long-term care and place a serious physical as well as financial burden on caregivers, not included under the scheme?

The marketing executive from the NH ‘strictly’ followed camp guidelines, even those that were not specified in any VAS documents, and was largely guided by ‘good business sense’. A 60-year-old female patient was brought in an auto to the camp in the fourth stage of cancer to seek admission to the private hospital under VAS. Although she was unable to walk, there was neither a stretcher nor a wheelchair available to shift her. The doctors at the camp did not physically examine the patient and only read through her reports. Finally, the marketing executive and the district coordinator explained to the patient’s son why she could not be referred to Bangalore:

Marketing executive: She has gone to the 4th stage. We can’t give [a] guarantee that she will survive. We can’t even guarantee that she will reach the hospital alive. For us there is a strict guideline that the patient should not come in the ambulance from the camp. What’s the point in taking patients who may not survive?

It was the fine print, as in any insurance scheme, that finally determined one’s access to treatment. In this case, the fine print indicated that critically ill patients made poor business sense as they may die and money would not be reimbursed.

Exclusions because of Irregularities in the BPL Card

The BPL card is the critical requirement for qualifying under this scheme to access care. A marketing executive of a private NH in one of the camps aptly put it: ‘BPL card is the most important thing in the scheme. Just as the ATM card is important for you, the BPL card is important for us. Your BPL card is our ATM.’

There were patients who did not receive BPL cards and for such patients, there was little one could do. However, patients for whom there was an unambiguous indication for surgery under the scheme were given unstinted help by the marketing team:

You go to the taluk office with the acknowledgment from the scheme that surgery is indicated. You say that you have to go to hospital and ask them to issue the BPL card. Take the field coordinator’s number. When you go to the taluk office, call him. He will talk to the food inspector there. (marketing executive, private NH, Raichur camp)

But such eagerness to support was not displayed in the case of a 35-year-old woman who visited the camp in Haveri district with a kidney problem, hoping to seek treatment under VAS. Even though her condition was covered by the scheme, there were irregularities in her BPL card, which listed her as ‘daughter’ instead of ‘wife’. She was asked to visit the revenue administration (tehsildar’s) office to get the error corrected. The woman lived in her natal home and worked as an agricultural labourer. Of late, her earnings had dropped due to her illness and she was desperate to seek treatment and get back on her feet. But now when she thought the treatment was within her grasp, the new complication diminished her chances of access to treatment, breaking her emotionally:

I have no one to do the entire running around. I am not well. I don’t have the strength to do it. What do I do? How will I get treatment? I am not even able to go for work. Now these people are saying without the correction in my BPL card I cannot get treatment. (patient, 35 years old, Haveri camp)

The marketing executive directed one of the arogyamitras to give her a letter addressed to the tehsildar to make the necessary correction. But there was no one to help in completing the paperwork. Her brother who accompanied her to the camp refused to go with her to the revenue office. ³ Paperwork was among the many hoops one had to jump through to get ‘free’ treatment and for patients like this woman from Haveri, this proved to be hurdle that was impossible to cross.

Cherry-picking Patients

On the other hand, patients who did not fit into the scheme but whose medical condition offered an opportunity for the NH to make money were encouraged to keep in touch with the field coordinator with the promise of treatment. For instance, the marketing executive decided that the 50-year-old woman with leukaemia should be referred to the hospital for treatment even though she was not covered under the scheme.

In the case of the boy with a lesion near the lung, the marketing executive persuaded hard to get the case referred to his NH.

However, the patient decided against it as he could not afford to pay ₹ 10,000. Despite his request for a referral letter to a government hospital in Bangalore, the marketing executive who intervened on behalf of the doctor refused, saying: ‘We don’t give any referral letter. If you want, you can come here on the 3rd. There is a bus leaving for Bangalore. You come to the hospital there. I will get it done for half the charge.’

These interactions indicate that the camps were recruiting grounds for private hospitals to bring in paying cases even when the scheme did not cover them. They carefully picked those patients who would bring in revenue. In fact, it is this pull and push of public–private partnership (PPP) that shaped the discourse within VAS:

The government is a purchaser of health services. We negotiated and fixed a reasonable price. They [the private hospitals] agreed to the rates mainly because of the volume. We have been able to provide them more beneficiaries whereby they can increase their viability. Otherwise why would they agree to these rates? Be it Narayana Hrudayalaya, Baptist, Fortis, Apollo or Manipal, all these hospitals have grown because of government schemes like Yashaswini and Vajpayee. (ED, SAST)

Camp observations provided an understanding of how the empanelled private NHs worked together to exclude the most vulnerable in desperate need of health care. Rejection of patients was based on various grounds: either the medical condition of the patient was not covered by any of the schemes, the paperwork was not complete or plainly because they were not ‘cases’ who would morph into ‘profits’. Commercial considerations seemed to govern patients’ access to treatment under the scheme rather than seriousness of the patient’s condition or the urgency of the need for treatment: this is one of the worst forms of violation of medical ethics. The ED of SAST agreed that the Trust had not been able to control these tendencies:

These private hospitals have a marketing team that is much stronger than their treating team [laughs]. I had to suspend one of the hospitals for organising its own camp. We try to have some control over that. By and large they still do that. Apart from this, they have a system with private practitioners—‘if you recruit one case, X amount will come into your account’.

Waiting Time for Authorisation from the Trust

On reaching the hospital, patients underwent a series of tests; the results had to be verified by SAST doctors through the VAS website and only after receiving clearance from the SAST, could the NH proceed with treatment. This was a supervisory measure by the SAST to ensure that the NH did not conduct unnecessary procedures and tests. The time spent after reaching the NH to initiation of treatment could be anything between four to 17 days. This waiting time took a heavy toll of families on the brink of financial ruin, which in turn jeopardised women’s access to care.

Non-admission of Patients and Refusal to Give Medication

Until the empanelled NH received the authorisation from SAST to provide treatment, it did not admit insured patients, irrespective of their medical condition. For example, the 22-year-old woman from Raichur, with a provisional diagnosis of Ewing’s sarcoma, was in acute pain and could barely walk, but she was not admitted. Her non-literate husband, who was struggling chasing papers and trying to understand the insurance system in the hospital, said: ‘I dread to think of what will happen to patients who come in an emergency condition. If they don’t admit and wait for papers and signatures the patient will surely die.’

Of course, he was not aware of the fine print that enabled these NHs not to ‘recruit’ such patients in the first place. Until the money was sanctioned by the Trust, the NH did not initiate treatment so much so that doctors did not even prescribe pain relief medications. The woman with Ewing’s sarcoma travelled to the hospital and back for a battery of tests without pain relief medication.

In another instance, a woman with a diagnosis of breast cancer had defaulted on her chemotherapy treatment. She returned for treatment after a gap of four months. While her file was being reopened, tests redone and sent to the Trust for approval, she requested that they give her some pain relief medications but the hospital refused:

I asked them to at least give me an injection to reduce the pain. But they said they will give treatment only after money is released from the Trust. I stayed there for four days with this pain and they did nothing. (woman patient with breast cancer, Raichur)

Spending Money to Seek ‘Free’ Treatment

The NHs had different practices related to patient accommodation, food and travel. Families had to wait in accommodations outside the NHs until their procedures were approved by the SAST. Some hospitals provided food for the patients, while in others, the patients and their families had to fend for themselves. While some NHs organised a bus to bring in patients from camps or reimbursed costs of travel, some others did not reimburse. Further, any medicines prescribed to an outpatient had to be bought by the families out of their own pocket.

Thus, patients spent considerable amounts of money on travel, accommodation, food, local conveyance from the place of stay to the hospital and back, and medicines. In an effort to cut costs, families and patients made some difficult decisions. The woman with Ewing’s sarcoma had an 11-month-old baby whom she was breastfeeding. Since bringing her sister to take care of the baby would cost them ₹ 500/day, she had to send the baby home with her sister to cut down room cost to ₹ 375/day. The trauma to her and the baby was part of the deal if she wanted ‘free treatment’ in a ‘five star hospital’.

Apart from the fact that the necessity for out-of-pocket expenditure in a ‘cashless’ scheme was a gross violation of the scheme guidelines, such expenses were prohibitive for women patients who largely depended on their families’ willingness to bear them. For instance, during the first eight days at the NH, the family of the woman with Ewing’s sarcoma spent a total of ₹ 15,000, which included ₹ 500 per day for accommodation, ₹ 200 per visit to the hospital for tests and the rest on medicines, groceries and on travel from Raichur. The family was reluctant to bear the huge expense for the treatment which had not even begun, and was supposed to be ‘free’. The woman’s in-laws had raised a loan and felt that as they had already spent a lot, it was not worth spending any more money since, in any case, she may not survive. Her natal family was angry:

She is after all their ‘vastu’ (object) and when she gets better she will work and contribute to their family income. So it is only fair that they pay for her treatment. (brother of the woman patient with Ewing’s sarcoma)

With every passing day, the pressure on family members to return home was increasing and jeopardising this young woman’s access to treatment, even if it was only palliative care as she was in stage 4. In unbearable pain, the young woman said in anguish, ‘Poor women like me should not get these kinds of diseases. If we get [them] we should not live to see such a day.’

In another case, the family of a 60-year-old woman with cancer spent 15 days in rented accommodation, waiting for all the tests to be done and reports sent to the Trust. With mounting expenses and increasing doubts about her chances of accessing treatment, the woman prevailed upon her son to return home:

I am already old. My son has already spent 12,000 rupees in the hospital and treatment has not even started. What is the guarantee it will start now? They first said it will take three days, now they are saying one week. It is peak season now. If my son stays here any longer we will have no food the whole of next year. (woman patient with cancer of the uterus, Raichur)

This woman was referring to a new rule introduced recently in the VAS that required all BPL patients to pay discounted costs of tests and diagnostics. Further, only if the medical condition was covered under the scheme would the costs be reimbursed. Otherwise, the patient had to pay for it. This was a clever device to trap patients into continuing to seek treatment in the same hospital even when not covered under the scheme. For example, in the above-mentioned case, the woman’s son had spent nearly ₹ 12,000 on various tests. He was told, ‘You will get back the money if your mother is advised surgery. Otherwise this money will not be returned.’ The woman’s son was regretting having come to this private NH and was wondering if he they should seek care in a government cancer hospital. But he was forced to decide against it because he had already lost a substantial amount of money on tests. And moving to any other hospital would involve more expenses. So, he had to grit his teeth and continue in the same private NH:

I think I made a mistake in coming here. People in my village recommended this hospital. They have taken so much money but there is no sign of treatment approval. We have no choice but to continue here. (son of a woman with cancer of the uterus, Raichur)

VAS’s blatant lie of providing ‘cashless’ treatment was proving to be very expensive for women patients whose families were reluctant to spend money on them in the first place. Consequently, it was proving to be unsustainable for such women patients.

Treatment Default

VAS’s viable business model spelt doom for continuity of care for poor patients. Staying in Bangalore for weeks at a stretch put tremendous pressure on caregivers in terms of money, resources, energy and time. A 40-year-old woman sought treatment from the local registered medical practitioner (RMP) for a painful lump in her breast and was referred to the VAS camp, in the taluk hospital, where she was diagnosed with cancer and referred to the NH in Bangalore. Having separated from her husband, she had been staying in her natal home with her three children. Her brother was the lone earning member of the family. He initially accompanied her to the hospital where she had to stay for 21 days, at the end of which she received her first cycle of chemotherapy. Staying away from work had seriously jeopardised the brother’s financial situation at home. When they were asked to return for the next cycle a month later, her brother was reluctant:

It is too much distance. This time I don’t know how long it will be. I am the only earning member. There is no one else in our house to go with her. We have decided to try naati medicine in Sindhanoor. (brother of patient with cancer of the breast)

So, the woman switched to herbal medicine. Four months later, the condition of her left breast worsened with constant bleeding and excruciating pain. Her brother refused to accompany her to the NH as he would miss work for a long time. Although she came with her son, the hospital delayed reopening her file to seek authorisation and refused her pain relief medications. This made her decide never to return:

They asked me to go back home, as the approval would take long. They said they will call once the money is released. It is now ten days since I came back. They have not called. I would rather live with this disease and die than go back to that hospital. (woman patient with cancer of the breast, Raichur)

Despite persuasion and intervention by the researchers, the woman refused to return to the NH. She then moved to a prayer group in a local church, while her disease took its relentless course.