Neelam Dalmia, a resident of Noida, felt a burning pain in her breasts in late 2016. On examining, she found a lump in her right breast. Through an MRI (magnetic resonance imaging) and a biopsy at a well-known private hospital in her locality, she was diagnosed with breast cancer. The 49-year-old decided to undergo chemotherapy right away, to prevent the cancer from spreading further.
She was asked to buy Trastuzumab injections, the mainstay of breast cancer treatment worldwide today, from the hospital pharmacy. Priced ₹61,132 each, 17 injections were prescribed every 21 days. The requirement of ₹10 lakh put a great strain on the middle-class family’s finances. Dalmia’s insurance covered the cost of only six injections.
Neelam Dalmia has filed a PIL against hospitals that compel patients to buy pricier medicines from their in-house pharmacy
However, through sheer fluke, the family discovered that the drug was available cheaper elsewhere. A few of Dalmia’s friends had bought it directly from a pharmaceuticals dealer at ₹50,000 each, with every fifth injection free on buying a specified quantity of medicines. Thus, the effective cost came down to ₹40,000 per injection.
“This difference of ₹21,000 was the trade margin of the private hospital, which it charges from breast cancer patients,” says Dalmia, who is still under treatment. From 17 injections, the hospital would have made a profit of ₹2.94 lakh from just one patient.
This story finds an echo across the country. Many private hospitals get patients to buy consumables from their in-house pharmacy, fetching them high profits in addition to the high treatment charges.
When Seema Rathi (name changed) from Chennai was diagnosed with breast cancer, she looked on the internet for the prices of medicines and, in the process, came in contact with some cancer survivors who helped her buy the medicines directly from dealers at cheaper rates.
However, both Dalmia and Rathi faced great resistance from the hospital authorities over their decision to buy drugs outside the hospital. Dalmia was even forced to threaten the hospital with legal action when they refused to allow her to buy Trastuzumab from a dealer of her choice.
Rathi was slightly luckier. “My treating doctor was very supportive and he helped me convince the hospital to allow me to buy medicines from outside,” she says.
Dalmia points to the scare tactics hospitals use. “Hospitals say they do not trust the safety and efficacy of drugs bought outside. Patients and their family, who are already under stress due to the illness, are unable to resist such pressure. But I realised that if I buy the same brand from an authorised dealer, then there should be no difference in quality,” she says.
The hospital authorities asked both women not to disclose to other patients that they had bought medicines from outside. The women, however, are determined to inform everyone about the unethical practice.
The legal way
Dalmia’s family has filed a public interest litigation (PIL) in the Supreme Court (SC) against what it calls the organised looting of patients by private hospitals that compel them to buy medicines only from their pharmacy at MRP (maximum retail price). The PIL also holds the State and Central governments responsible, as they are the regulating agencies.
“Despite knowing all these malpractices adopted by the hospitals all over India, (governments) have shut their eyes and totally ignored the interest of the patients,” the PIL states.
It highlights the need for the regulation of private hospitals to prevent such malpractices.
The unethical billing practice of private hospitals was in the news in November 2017, after seven-year-old Adya Singh succumbed to dengue during her treatment at Fortis Hospital, Gurugram. The family was handed a bill of ₹16 lakh for the 15 days of hospitalisation. The markup price for the consumables was very high. Three other similar cases from hospitals in Delhi-NCR were reported around that time.
The government body National Pharmaceutical Pricing Authority took cognisance of these complaints, and its analysis in February 2018 showed that private hospitals made up to 1,700 per cent profit on the sale of drugs and consumables.
Adya’s father, Jayant, filed a writ petition in the SC for an enquiry into the sky-high prices and profits of private hospitals. “We are asking for a reform of healthcare that will not allow patients to be turned into victims,” he says. “We have learnt that the NITI Aayog [policy think tank] submitted a report to the Central government that said no pharmacy, be it inside or outside the hospital, can charge more than 30 per cent markup on the purchase price of any consumable, including medicines... but the strong lobby of pharmaceutical companies and private hospitals is not allowing it to be implemented.” Singh has now founded Campaign for Dignified and Affordable Healthcare, a collective of patients and their families that is fighting against the misuse of power by private hospitals.
New cancer drugs
The affordability of cancer drugs, however, depends on several factors. An injection priced around ₹40,000 is unaffordable for the majority in India. Muskaan Bano (name changed) went to Safdarjung Hospital in New Delhi after a neighbourhood clinic diagnosed her with breast cancer. “Initially the doctor did not tell me the name of the medicine, saying I cannot afford it. But my daughter pressed him and he finally told us it is Trastuzumab. I was to take 17 injections, each costing ₹42,500. My family is too poor to afford even one injection,” says Bano.
She too contacted a dealer, who charged ₹40,000 per injection, with every fourth injection free. Bano applied for the Prime Minister’s fund for cancer patients, but that could cover only six injections. She met the rest of the cost by selling her family’s jewellery and through donations.
“It has been two years, and I am fine now. But there should be one cost for medicines. How can patients be left to bargain with hospitals and dealers?” she asks. She continues to undergo tests every two months that cost ₹7,000.
Breast cancer is the most common cancer among women in India, accounting for nearly 25 per cent of all cancers. The government has launched facilities for screening of breast and cervical cancers at health and wellness centres across the country. However, the lack of affordable medicines can hamper treatment.
The problem of unaffordable breast cancer drugs is not new in India. “The trade margins of hospitals have been high from the beginning. The medicine is already unaffordable to the majority of patients, and further markup makes it even more inaccessible. As cancer medicines are not available in retail pharmacy shops, there is even less transparency, and it is left to the patients to look for dealers,” says Kalyani Menon-Sen, an independent researcher and the founder of Campaign for Affordable Trastuzumab. She launched the campaign in 2012 after her close friend was diagnosed with breast cancer and prescribed the drug. “We were shocked at the price that the patent holder company Roche was quoting,” she recounts.
The high cost of Trastuzumab is linked to patents. Only two companies have the licence to sell in India — Swiss company Roche and Bengaluru-based Biocon. This monopoly has helped keep the price high, despite the medicine’s decade-long presence in the market.
The production cost, too, does not justify the price. Based on his calculation, Prof Andrew Hill of the University of Liverpool pegs the price of Trastuzumab at around ₹1,000 per injection. Even at the discounted price, the dealers are selling it at 40 times more.
“Cancer is a scary disease. As soon as a patient hears about it, she feels that there is no hope of survival. And then if you tell her that there is hope but it cannot be afforded, then it becomes even more scary,” says Bano.
Jyotsna Singh is a Delhi-based health journalist
Published on June 22, 2018