Vijayalakshmi aged 55, Sangeeta aged 37 died last week from cancers that did not have medicines in India. Sangeeta, who has a sister in Canada tried her best to get medicines for her but it was too late, and doctors in India were not willing to try a therapy that had not been used before. Scores of men, women, and children die every day in India due to cancers that have no treatments available due to lack of availability or are diagnosed too late to do anything for the patient. Access to cancer medicines have been debated for quite some time now and though we have a national program and several insurance products, cost of care has been a hot debate for a few years. A resolution was adopted by the 2018 Seventieth World Health Assembly (WHA) on Cancer prevention and control in the context of an integrated approach and a WHO Technical Report- ‘Pricing of cancer medicines and its impacts’ was published in 2018 to address some of the requests made in the resolution to address cost of care. 

Patients and patient organisations have not been consulted during the process of this report and though some from civil society was consulted it is not representative of the community. The report presents cancer care challenges from a single perspective: that of certain government ministries that pay for cancer care. This “payer only” viewpoint implies that only certain government entities and health economists should set policy on cancer care priorities, disregarding the vital role of patients and their families in the fight against cancer. The report makes key judgments — such as the value that medicines deliver to patients, the impact of extending patients’ lives, and trade-offs between improved efficacy and safety — without regard to patients’ views. For example, the WHO notes that for some new medicines “the average benefit is three months which may be considered marginal by clinical experts” Yet given the prognosis of some aggressive cancers, these months of extra life can be a considerable extension, valued highly by patients and their families. The report does not adopt a value assessment approach and the role of value assessment in delivering value for money. WHA’s policy on Health Technology Assessment (HTA) advocates value assessment and more and more payers in WHO Member States are using value assessment analyses to support their purchasing decisions. 

In the context of India, this is even more important as burden of care most often falls on the patient and for the government to have a publicly funded cancer care program, value assessment will enable to make the right choices for domestic innovation and generic medicines. The WHO report also lacks proposals to enable differential pricing and better financial ability through insurance and other mean, offering a wider choice for patients to choose a pathway that is best suited to their needs. The report calls for price transparency and price caps which are all welcome moves to ensure enhanced access in the short term but could be detrimental in the long run, reducing access to treatment for patients and producing less innovation in the future. WHO missed an opportunity to look comprehensively at the entire continuum of cancer care (prevention, detection, diagnosis, treatment, and aftercare). Patients, who often have the best perspective on the interrelated challenges of fighting cancer, could have helped the WHO understand the bigger picture and recommend ways to improve coordination among different parts of the health care sector. The quest for newer medicines is never ending and no patient — even if there is only one in the whole world, from a rare cancer -would ever say that R&D should not continue or that one life does not matter. 

Investment in research and innovation is therefore never “too much” from the patient perspective. Another missed opportunity therefore is to seek opportunities for investing in research and incentivize innovation by governments and payers. Much of the emphasis of the report is that the research and development is the responsibility and onus of the industry and that the supply is being over emphasized and overpriced. Supply responds to demand and the real challenge is to get demand side reforms that use new treatments efficiently and send the right signals to industry about the new cancer treatments that payers want to fund. The report could have focused on providing support for Member States introducing effective HTA and related priority setting mechanisms in order to enhance both the introduction of universal health care and more efficient pricing and reimbursement mechanisms based on value-based pricing. Most products that underpin health care provision are off-patent multi-source generics and, in the future, biosimilars. Advice on the effective procurement of these products will be key to enhance access. WHO missed an opportunity to spark a useful discussion on improving cancer care by not involving a wider stakeholder discussion that includes patient groups. It is true that different stakeholders — health providers, national insurance programs, drug regulators, patients, the private sector, academia, civil society -- have different perspectives on how best to fight cancer. Sometimes these groups disagree or have competing interests. It is therefore, very important to build consensus around practical policy solutions, that can provide strategic direction for increasing holistic access and address the care continuum pathway.