Forty-five-year-old Neeta Kumar*, a resident of Noida, was diagnosed with an aggressive form of breast cancer in September. When her doctors suggested a new drug that had shown considerable promise in treating her condition, the family was hopeful. But there was a catch: the treatment would cost them at least Rs 10 lakh.The drug, pembrolizumab, marketed as Keytruda by pharmaceutical giant MSD, is an immunotherapy used to treat at least 18 types of cancer, including the kind of breast cancer Kumar has. Under the company’s patient access programme, patients must pay for the first five infusions, after which they can receive up to 12 additional infusions free of cost in a year. Each infusion is administered every 21 days. This is over and above the expenses on chemotherapy, surgery and other supportive care.The total treatment estimate given to Kumar’s family was around Rs 20 lakh. A homemaker, she has no personal health insurance, while her husband works in the informal sales sector. Her brother, a professor, has health insurance but cannot extend its benefits to her. Faced with a choice between death and debt, they decided to go ahead with what they considered the best available treatment. But even that decision came with complications. The hospital where Kumar is undergoing treatment told the family that although she was eligible for treatment under the economically weaker sections (EWS) category, she would not be able to access immunotherapy under that arrangement. To receive the drug, the family would have to pay for all her treatment in full.“Even for more affluent families, this cost would be a significant hit. Without any coverage, it feels impossible. Add to that the unfair policies of the hospitals,” says her brother.Also read | Cancer drug price caps: Why India needs more than price controlWith her first cycle of immunotherapy approaching, the family was relieved to hear that pembrolizumab was among the cancer medicines for which the government had announced a cap on trade margins. They hoped this would bring down the price, even if only marginally. There was, however, no relief. Despite the government capping trade margins at 30%, the price of the patented drug remained unchanged at Rs 2.17 lakh per vial.Kumar’s experience illustrates a larger problem with the Centre’s latest intervention to make cancer medicines more affordable. While the government has capped trade margins on 137 cancer medicines, including expensive patented drugs such as pembrolizumab and ribociclib, the move has not necessarily translated into lower prices for patients. An analysis of revised prices submitted by pharmaceutical companies shows that several of the most expensive formulations, particularly patented medicines, have remained untouched. And even where prices have fallen, the reductions are often too small to make a meaningful difference to families facing treatment bills running into lakhs.The difference between having access to these medicines and being able to afford them is stark.Story continues below this adProhibitive therapiesTake the case of 59-year-old Paresh Shah, who has been living with lung cancer since 2018. His cancer was detected at an advanced stage, after it had spread to his lymph nodes and backbone. Yet, following immunotherapy, he continues to feel physically fit and has no outward symptoms of the disease.Immunotherapy works by using the body’s own immune system to fight cancer and can cause fewer side effects than conventional chemotherapy and radiotherapy. But access to these newer treatments remains largely restricted to patients who have the financial means or insurance coverage to pay for them. Shah was fortunate to have comprehensive health insurance through his employer. Nearly 80% of his treatment costs, including the immunotherapy drug, were covered. “Just for one year in between I had to pay out-of-pocket, for which I broke into my savings. I was fortunate to have the means to go through the treatment,” he says.For patients without such coverage, the same treatment can be financially prohibitive. Majida MA, 49, a lawyer from Kerala undergoing treatment for breast cancer, had little expectation that the latest trade margin intervention would bring down the cost of her medication. The immunotherapy medicine prescribed to her, ribociclib, marketed as Kyxana by Novartis, has a maximum retail price of just under Rs 1 lakh. Even after discounts, she spends between Rs 65,000 and Rs 80,000 every month.Majida had earlier approached the Kerala High Court, seeking directions for the government to use interventions under patent law or other mechanisms to make the drug more accessible to patients. Her medicine was included in the government’s 2019 pilot on trade margin rationalisation. Yet, its price has continued to rise. “The 2019 move had failed to control the prices and even though the medicine was included in the list again, I knew that there wouldn’t really be a change in the prices,” she said.Story continues below this adThe limits of price controlThe Centre announced the latest Trade Margin Rationalisation (TMR) order last month, capping trade margins on 137 cancer medicines at 30% over the price at the first point of sale, whether to a stockist or directly to a hospital. Pharmaceutical companies were asked to calculate revised prices and submit them to the National Pharmaceutical Pricing Authority (NPPA), with the new prices coming into effect from November 9. An analysis of revised prices submitted by companies for 643 formulations — covering different strengths, doses and brands of the 137 medicines — shows that the average reduction was less than 40%. Only five formulations saw price cuts of more than 90%.More significantly, the prices of 159 formulations remained unchanged. These included all the patented drugs in the analysis. The most expensive medicines were disproportionately represented among those whose prices did not fall: 53 of the 159 formulations with unchanged prices cost more than Rs 1 lakh per pack. A reduction of more than Rs 10,000 per pack was recorded in only one in six formulations. The prices of 83 formulations fell by between Rs 5,000 and Rs 10,000, while 173 saw reductions of between Rs 1,000 and Rs 5,000, according to the analysis by the Working Group on Access to Medicines and Treatments.For patients, these numbers point to the limitations of an intervention that regulates trade margins but does not necessarily address the underlying price of expensive patented medicines.Dr Sarika Gupta, who specialises in gynaecological cancers, says that some immunotherapies have proved highly effective, citing pembrolizumab for the treatment of endometrial cancer. But their cost often puts them beyond the reach of most patients. “Even when we give the option, most people do not choose it because the drug alone can cost more than the surgery and chemotherapy sometimes,” she says.Story continues below this adThe problem is compounded by the fact that immunotherapy is often prescribed only after other treatment options have failed. These medicines are generally used in patients with advanced or recurrent cancers, by which point families may already have exhausted much of their savings. “What this means, however, is that they have already exhausted their funds by the time they reach the immunotherapy stage. So, most patients end up not receiving the treatment,” Dr Gupta adds.For patients who have already fought cancer once, the financial burden can become a recurring ordeal. Seventy-year-old Poonam Nanda, who has battled breast cancer twice, was confronted with the possibility of another round of treatment when her cancer returned. “Lungs are clear, breasts are clear, lesions have shrunk, shrunk, shrunk…but there are four new ones,” her doctor told her. Nanda, who had helped her nephew and cricketer Yuvraj Singh through his battle with cancer and later mentored patients through the YouWeCan foundation, called him after hearing the news. But beyond the fear of recurrence, another concern weighed on her: “More importantly, I worried about another round of expense. How long can I go on?”First diagnosed with breast cancer in 2009, Nanda underwent at least nine sessions of chemotherapy, each costing around Rs 50,000 at the time, followed by radiation and medication. When the cancer returned in 2018, she underwent surgery, radiation and hormonal treatment. In 2024, another lump developed at the base of her neck, with the disease spreading to her bones and liver. Her subsequent treatment included three courses of stereotactic body radiation therapy (SBRT), a highly targeted form of radiation, costing approximately Rs 3 lakh each. The total expenditure came close to Rs 10 lakh.She was also prescribed Pivikto, a patented drug without a generic alternative, which cost approximately Rs 2,500 a day for two tablets. After nine months, she was shifted to hormonal medication. Her regular medication expenses now amount to around Rs 1 lakh a month, excluding periodic investigations, scans and other procedures. Despite having insurance and financial resources, Nanda could recover only around 50% of these expenses through her policy. The rest had to be paid out of pocket.Story continues below this adThe financial burden is particularly severe for patients who have to travel long distances to access specialised cancer care. Lisha Jain, from Nalbari in Assam, has spent an estimated Rs 17-18 lakh on breast cancer treatment so far. This includes Rs 30,000 for a biopsy, Rs 30,000 for genetic testing, Rs 6 lakh for a bilateral mastectomy, Rs 1.2 lakh for 16 sessions of radiotherapy and Rs 1.44 lakh for a year of oral chemotherapy. Without health insurance, her family exhausted its savings and had to seek financial help from friends.The expenses did not end with the treatment itself. Jain spent around one-and-a-half years in Mumbai with her son and mother, paying for accommodation, schooling, local travel and daily living expenses. She continues to travel from Assam to Mumbai every six months for consultations. Flights for three family members cost between Rs 70,000 and Rs 80,000 per trip, while hotel accommodation for five to six days costs around Rs 2,500 a day, apart from consultation fees and investigations.When patent expiry makes a differenceThere are, however, examples of how cancer treatment can become substantially more affordable when market competition increases. Dr Sachin Hingmire, senior medical oncologist at Deenanath Mangeshkar Hospital, Pune, cites the example of palbociclib, a drug used to treat hormone receptor-positive breast cancer. Around four years ago, when the drug was protected by an international patent, it cost approximately Rs 1.5 lakh a month. Following the expiry of the patent, more than 40-50 Indian pharmaceutical companies began marketing the drug, bringing its monthly cost down to around Rs 10,000. For patients such as Nanda, however, the availability of cheaper alternatives depends on the medicine prescribed and whether a generic version exists. Patented drugs without generic competition continue to impose a significant financial burden.Industry calls for wider access measuresThe Organisation of Pharmaceutical Producers of India (OPPI) has supported the Centre’s Trade Margin Rationalisation order, saying it could improve the affordability and accessibility of cancer medicines. Its Director General, Anil Matai, says effective implementation and monitoring would be important to ensure that patients benefit from the intervention without disrupting the continued availability of medicines. But sustained improvements in access, argues OPPI, would require stronger reimbursement mechanisms and greater collaboration among the government, insurers, pharmaceutical industry and other stakeholders. The distinction between a drug being available and being affordable is still critical.