In Delhi’s Sangam Vihar, one of India’s largest unauthorised colonies, it is often said that life comes cheap. That, however, cannot be said for at least one of the area’s residents who has, in the last two years, spent Rs 16 lakh to keep himself alive. “This house that you are standing in now, is all that I have left. My land in the village, my wife’s jewellery and our savings, all have gone in buying medicines for my treatment,” said Kishori Lal, 63, a nursing professional, who quit work in 2016 after he was diagnosed with stage-4 non-small cell lung cancer.
In early March, the national pharma pricing authority came out with the revised MRPs of 390 brands of 42 non-scheduled cancer drugs, with significant reductions for at least 100-odd brands. According to the notification, the MRP of 38 brands were brought down by 75 per cent, 124 brands by 50 to 75 per cent, 121 brands by 25 to 50 per cent and 107 brands by less than 25 per cent.
The move is expected to benefit 22 lakh cancer patients in the country, according to the government. Kishori Lal, whose drugs were costing him about Rs 1 lakh per month (in 2018), could have been one of the beneficiaries. However, Lal was disappointed to find that his drug was not on the list. “Last year, I had to quit my medication for three months because I could no longer afford the treatment. It is only this year that I have been able to start my medicines again after I managed to get a one-time fund of Rs 3 lakh from the PMO fund,” he said.
For many patients such as Lal, the revised prices will not work. Currently, Lal is on Ceritinib, a targeted cancer therapy drug, that costs him Rs 53,506 for a month’s course (90-capsule pack), which is not on the list. “Last year, I was having Crizotinib, which is on the government’s list. There is a price drop of about six per cent in that drug. But it will still cost me about a lakh per month,” he said.
Lal says that most pharmacists will offer discounts for expensive cancer drugs anyway. “When I went to the AMRIT store [a government pharmacy inside AIIMS, Delhi], I was told that drugs would be cheaper if bought them from outside. I also found that the range of discounts varies depending on the store. Patients end up running from store to store to get discounts,” he said, adding that his current pharmacist was giving him a discount of 25 per cent.
Dr Jyoti Bajpai, medical oncologist, Tata Memorial Hospital and Research Centre, Mumbai, confirmed the trend of discounts for cancer medicines. “Typically, patients will get deals such as buy three, get one free for a particular medication. The costs are more affordable at public hospitals than in private hospitals,” she said.
Activists tracking drug pricing say that there are several anomalies in the way the prices have been calculated. On February 27, the regulator capped the trade margins (difference between the price at which the manufacturers sell the drugs to distributors and the final price to the patient) of 42 non-scheduled cancer drugs at 30 per cent. Based on this, the regulator said that the prices of 105 brands would see a decrease of up to 85 per cent. However, according to the March 8 notification, the number of brands changed to 390, and later, the number went up to 463. “According to the formula used to cap the trade margin at 30 per cent, the final price that works out includes a markup of 42.8 per cent on the retail price. This methodology is a radical departure from the existing practices of providing margins in the Drug Price Control Order. Consumers would not get the full intended benefit of the 30 per cent cap. Besides, the formula does not disturb the margins of companies before the medicines reach the stockist,” said Malini Aisola of All India Drug Action Network.
Though the current list uses a better data set of prices (from the respective companies) to arrive at a more accurate calculation of price drop, the list excludes several expensive medicines, and there are wide variations in the prices of different brands for the same drug, said Aisola. “The price reductions for patented drugs [such as Crizotinib], are insignificant, and provide no relief to patients." Uniform ceiling prices and graded margins (depending on drug price) are better ways to deal with high costs of cancer drugs, she added.
A government source familiar with the developments told THE WEEK that though the regulator had been planning to cap trade margins—ideally 24 per cent in the case of drugs—the current list of 42 non-scheduled drugs only represented a piecemeal approach to regulating drug prices in the country. “Though trade margins are used by the industry to promote unethical marketing practices, and there is a need to cap margins, in the long term, the government needs to focus on having a pharma policy, a draft of which has been in the works for long, to address the issue of prices,” the source said. As for the current list, the expert said that it was unclear as to what was the basis for choosing the 42 drugs out of an otherwise expansive list.
While welcoming the step taken by the government, oncologists that THE WEEK spoke to also advocated the need to expand the present list of drugs. “For instance, there’s a drug called T-DM1, (not in the list) that is used to treat HER2-positive breast cancer that has spread to other parts of the body. This is used in patients who have already been treated with an anti-cancer drug called Trastuzumab and a type of drug called a Taxane. Treatment with this drug could cost up to Rs 2.5 lakh per cycle, which is very steep for most patients,” said Bajpai.
Dr Pramod Kumar Julka, senior director, Max Institute of Cancer Care, Lajpat Nagar, said that since newer expensive treatment approaches such as immunotherapy and targeted therapy were being used in cancer, costs could be brought down radically if cancer was detected early, tests to determine the specific gene mutation for each patient (for administering the right medicine) were made cheaper and accessible, and there was push for more generic medicines. “In a few years, cancer will be the number one killer disease in the country. We need to take these steps immediately,” he said.
For Lal, however, the big worry is what to do after the Rs 3 lakh is used up. “Between the medication, tests and the diet I am required to have, I will soon run out of this money. The problem is a few companies are making most drugs. If there were more companies making these medicines, the prices would have been much cheaper,” he said. “I do not know where to arrange for money anymore. Every night, I worry, how long do I have left?”