Deficient state-supported cancer care: A source of deep concern

As she walked into my consultation room, her face was etched with anxiety. She was a 46-year-old lady, a mother of two, receiving treatment for hormone-negative human epidermal growth factor receptor 2 (HER2)-positive breast cancer. Multiple nodes had been involved, and she was receiving treatment under the state government health scheme. She had completed her treatment 8 months ago but could unfortunately not take HER2-targeted therapy as it was not covered under the scheme in private hospitals. She had recently been told that her tumor had relapsed with multiple liver and bone metastases. Her prognosis was grim, and her survival would be limited by the incurable recurrent metastatic disease. Such stories are not uncommon in corporate hospitals, and they highlight the need for more affordable treatment options for patients with cancer.

With a lot of hope and the aspiration of delivering quality cancer care back in my home state, I graduated from one of the most reputed cancer institutes in the country as a qualified medical oncologist, armed with all the knowledge necessary. However, within a few months of starting my private practice, I realized that many of the treatments that were so easy to administer in my parent cancer institute were difficult or impossible to deliver in private hospitals in the state. State government health schemes are operational in many private hospitals including the one where I work. Although these state government health schemes provide coverage for cancer therapy, there are still significant gaps and lacunae in the system. Some states have not included drugs like trastuzumab, rituximab, bevacizumab, epidermal growth factor receptor (EGFR) tyrosine kinase inhibitors, and other small molecule vascular endothelial growth factor (VEGF) inhibitors in their government health schemes. The incomplete treatments that I am administering to patients leave me with a sense of dissatisfaction, because despite knowing the standard of care that would yield the best cancer-specific outcomes, I am unable to deliver those therapies as they are not supported by the government. Consequently, a sizeable number of these patients are going to relapse in the future. After appropriate counseling, some patients manage to take such therapies by paying out-of-pocket, but most cannot afford the expenses.^[1,2]

There is a very low penetration of health insurance schemes in India with only 15% of the country’s population covered by health insurance.^[3] As a result, many patients pay out-of-pocket for healthcare.^[4,5] A high percentage of out-of-pocket payments and low health insurance coverage cause the complete financial breakdown of many families following the diagnosis of cancer, pushing them into poverty.^[6–8] The complexity of cancer therapy and the cost involved make cancer care a true test of the credibility of the healthcare system.

I have come to realize over the past few years that there is no uniformity across the country with respect to state-supported cancer care. There is a wide interstate variation in the drugs covered, with some states offering better coverage than others. There are significant differences in the money spent on health across individual states and union territories. Furthermore, there are substantial variations in basic health indicators between states such as infant mortality rate, number of available clinical staff, and physical infrastructure. A good understanding of these differences, which are complex to interpret, is required to be able to provide affordable cancer care in India.^[4] Even within a state, some targeted therapies under the state government health scheme are only permitted in government cancer centers and not in private hospitals. Is it practically possible for all patients requiring advanced therapies to take treatment at government cancer centers only? Some state governments do not have adequate coverage for palliative chemotherapy. The amount earmarked for one cycle of palliative chemotherapy is so low that it is not possible to administer even basic protocols such as paclitaxel + carboplatin or infusional 5-fluorouracil + leucovorin + oxaliplatin/irinotecan (FOLFOX/FOLFIRI) in private hospitals, because almost all private hospitals sell drugs at the maximum retail price (MRP) rather than the base price. This is the reason why a regimen like FOLFOX, which can be comfortably administered at a very low cost in government hospitals, cannot be given in private and corporate hospitals at the same low cost.

The complex interplay between sociocultural and economic factors that affects cancer care in India is probably not seen anywhere else in the world.^[9] Illiteracy, inaccessible care, inappropriate initial treatment, and false promises such as “complete cure with no side effects” made by local traditional healers and unqualified quacks, as well as the myriad of myths and stigma surrounding cancer and its treatment, general misconceptions among family members and society regarding the prognosis of cancer (such as the diagnosis of cancer being a sure shot death sentence for every patient), and the belief that it is futile to even attempt to treat them—all have a negative impact on affordable cancer care.^[10,11]

What is the way forward in this grim scenario? How can we ensure better and equitable cancer care throughout the nation? These are the questions that constantly plague my mind. Here are a few thoughts on how we can improve in this area.

1. Every state government has its own state-specific health scheme; in addition, there are health schemes operational at the center, but none of these schemes have been designed to address the complexity and cost of cancer care.^[9] The State Ministry of Health must constitute a core committee for cancer care in each state. The committee should include representatives from medical, surgical, and radiation oncology departments from both the government and private sectors. This core committee should audit the records of patients receiving treatments under the state government health schemes at least semi-annually, to understand the inadequacies in the system, to keep track of what percentage of patients are unable to receive the basic standard-of-care therapies and how many such patients eventually relapse. These reports with appropriate recommendations should be regularly submitted to the Ministry of Health. These audits could also estimate the extra expenditure per annum that would be incurred by the government by including these therapies in the government health scheme, which would help to appropriately revise the budget allocated for health in the state. Proper patient data management and homogenization of these data to obtain accurate numbers, would also play a very important role in these audits. The public health spending per person in India is one of the lowest in the world. Although the overall public expenditure is increasing, this increase is not adequate to deliver basic cancer care to all patients with cancer across the state.^[12] This situation needs to improve. Certainly, an open-minded and supportive government is essential for the success of this strategy. Uniformity should be ensured throughout the country with respect to cancer care coverage.^[13] This will help improve the coverage to include basic standard-of-care treatments.
2. Governments should negotiate with private hospitals to provide medications at the base price rather than at MRP for patients taking treatment under the state government health schemes. This will enable us to administer many regimens that are covered by the government health schemes, but which we are currently unable to provide to patients due to the price difference between the amount allotted in the scheme and the actual MRP of the drugs. Most of the out-of-pocket payments go into the private sector. The expenditure for cancer care in the private sector, especially on drugs, remains very high.^[14] There is no governance or regulation of the privatization of cancer care. This is the need of the hour in India to ensure high standards of cancer therapy.^[15]
3. Governments must encourage more people to opt for at least basic health insurance. Obtaining a health insurance policy must be made mandatory for obtaining jobs or taking admission to colleges, etc. This will ensure a wider population insurance coverage, which will help more patients to receive at least some cancer treatments that are not covered by the state government health schemes.
4. Focusing on cancer prevention strategies such as tobacco control (which is responsible for nearly 40% of the cancer burden) will certainly help reduce the cancer problem itself. This will address the problem at its roots. The financial burden on patients’ families suffering from tobacco-related cancers is not just due to the cost of treatment but also due to the loss of income, due to the sickness of the breadwinner, loss of productivity, and premature death. India incurs huge economic losses due to tobacco-related diseases.^[16]
5. Strengthening the screening program for cervical, breast, and oral cavity cancers is another strategy for cost-effective cancer care. Although oral cavity cancer screening is not widely advocated in the West, it assumes utmost relevance for our nation as oral cavity cancers are highly prevalent in India due to the widespread use of smokeless tobacco.^[17] These screening programs must be government-funded and must provide free-of-cost screening or charge only a nominal fee. This government-funded screening should be applicable to every Indian citizen, irrespective of their socioeconomic status. Quality assurance should be incorporated at every step of this screening process. As most of the cancers in our country are diagnosed at an advanced stage and have a detrimental effect on household income, having an effective screening strategy in place for cancers that are amenable to screening will result in the early diagnosis of most of these cancers, when their treatment is cheaper.^[18,19] Without a doubt, screening for cancer is much cheaper than treating cancer. Hence, cancer prevention strategies such as stringent tobacco control and screening programs constitute a cost-effective way of tackling the cancer burden.
6. Drug repurposing and determining the minimum effective dose of expensive drugs are areas where extensive work is being done in India and have been the basis for oral metronomic chemotherapy (giving low-dose chemotherapy in a prolonged, continuous, or repetitive manner), which is being used for head-and-neck, ovarian, and a few other cancers.^[20,21] Encouraging research in this area could be an important step in the development of cost-effective regimens for patients, which is important not only for India but also for other low-income countries.^[22]
7. The unsustainable cost of cancer medications is another major problem in India.^[23–25] The prices of the newer molecularly targeted drugs from major pharmaceutical companies are prohibitive and well beyond what an average Indian citizen can afford. A radical shift in global pharmaceutical responsibility is required to ensure global access to newer cancer drugs beyond the richest nations of the world. This access will enable patients in all countries to receive the treatment they need.
8. Regional cancer centers need to be further strengthened with better infrastructure and manpower so that they are empowered to provide quality cancer care to all patients. This is one of the important goals of the National Cancer Grid.

Major policy changes need to be made by the Indian government to ensure that the entire population has access to healthcare, irrespective of their socioeconomic status. With proper planning and willingness of the government to help, we can significantly improve the quality of cancer care in the state and narrow the rift between the basic standard-of-care and the actual cancer treatments that we are able to provide to patients. This will result in better cancer-specific outcomes and reduced expenditure on palliative treatments that are required when patients relapse due to inadequate treatment at baseline. By “standard-of-care,” I refer to basic treatments such as rituximab for cluster of differentiate 20 (CD20)-positive lymphomas or trastuzumab for HER2-positive breast cancers. There may be other outrageously expensive standard-of-care therapies for various advanced cancers that provide only a few weeks of extra life at a disproportionate cost. It is unrealistic to expect such treatments to be funded by the government when resources are scarce. A pragmatic approach to resource allocation with realistic goals could significantly improve the delivery of high-quality cancer care at affordable costs. Let us hope that in the coming decade, we will be able to see this improvement.

Declaration of patient consent

The authors certify that they have obtained all appropriate patient consent forms. In the form the patient has given her consent for her images and other clinical information to be reported in the journal. The patient understands that her name and initials will not be published and due efforts will be made to conceal her identity, but anonymity cannot be guaranteed.

Financial support and sponsorship

Nil.

Conflicts of interest

There are no conflicts of interest.