The prohibitive cost of treatment and inadequate access to oncologists increase the number of cancer deaths in India, reports Rohan Gupta.

In 2018, Mumbai Police lost one of its most decorated officers, Himanshu Roy who was a former chief of Anti-terrorism squad and a cancer survivor but had a relapse in 2016. A one-page suicide note recovered from his residence said that he had taken his life because of his battle with cancer.

Roy’s case of fighting the deadly disease is not as uncommon.

India has an estimated 25 lakh cancer cases, according to India’s National Cancer Registry Programme. The disease claimed 7,84,821 lives in 2018 of which 4,13,519 were men and 3,71,302 women.

Breast cancer is the most common cancer among females, while among men, it is cancers of the oral cavity and lungs.

The numbers are stark, yet they do not capture the whole story. And, it is not just the high incidence of cancer, but also issues of affordability and access to basic treatment, which are responsible for the increase in cancer deaths in India.

The economic burden comes hand-in-hand for families fighting cancer as both, the diagnostics, as well as treatment costs, are extremely expensive.

The treatment of the commonest forms of cancer in India – head and neck cancer – usually costs between Rs. 15,000-20,000 (US$210 to US$280) a month, in government hospitals. Whereas, the cost of treatment in private hospitals is “forbiddingly high”, according to a research article published in the Asian Pacific Journal of Cancer Prevention.

According to the World Bank, the average monthly income of a person in India is close to Rs 10,000 (US$139). Thus, the affordability gap is huge.

Furthermore, India is the pharmacy to the world, yet more than 60 per cent of total healthcare spending is an out-of-pocket expenditure, according to National Health Account Estimates data. As a result, people end up getting pushed into poverty.

There are vaccines that exist against the human papillomavirus (HPV), which causes cancers of the cervix in women, as well as cancers of the head and neck.

Vaccination could help prevent cervical cancer which killed nearly 60,078 women in 2018 alone, more than anywhere else in the world, according to Globocan data. In fact, in over 100 countries, the HPV vaccine is given to girls at the age of 11 and is a part of public vaccination programs. But, a key reason it is not being used in public health programmes in India is its ‘high cost’.

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Rampant problem of medical negligence

With the rise in the number of cancer patients, there is also an alarming increase in the number of medical negligence cases. This has further raised questions about the sorry state of healthcare in India.

Syed Z. Imam, 66, a former civil construction manager shared the agony that he and his wife, Nasra Imam had to go through due to a doctor’s negligence.

Nasra, who was diagnosed with Ovarian cancer in 2011, was initially taken to a Gynaecologist. Even though the doctor had suspected her of having cancer, without recommending any confirmatory tests, she conducted a Gynae surgery. “The doctor should have referred my wife to an oncologist or could have asked for confirmatory tests,” said Syed Imam. “The negligence on the doctor’s part delayed the course of treatment.”

Its been almost a decade and Nasra Imam is still undergoing cancer treatment. “I often volunteer to help other cancer patients so that they get timely treated,” said Syed. “It is important for cancer patients to have a clear understanding of the disease and the treatment options available. It’s important they get due medical attention at the right time.”

Dealing with the cost of cancer treatment

Not only does cancer take an enormous toll on the health of patients and survivors—but it also has a tremendous financial impact.

While analysing a variation of cost among anti-cancer drugs available in India, we found that the National Pharmaceutical Pricing Authority (NPPA) is responsible for regulating drug prices in India. It periodically caps the prices of some drugs, which it deems as essential, by bringing them under the National List of Essential Medicines (NLEM).

In 2017, the NPPA capped the price of Trastuzumab, a drug used to treat breast cancer at Rs 55,812.29/ 440 mg (US$784). But the same drug was actually available in the market at half the cost. Officials at the NPPA disclose that the whole exercise of cost regulation in the country is faulty.

“The price ceiling is decided by taking a simple average of the MRP of all medicines in a particular segment with sales of more than one per cent,” said an NPPA official on the condition of anonymity.

“It does not take into account the huge discounts being offered by companies on their drugs,” he added.

Eventually, when the drug reaches the market, it is sold at different rates. Even though cancer drug prices are much lower in India than in most developed economies, common people still find it hard to purchase.

“Uncontrolled trade margins in the retail market and unscrupulous profiteering by hospitals and pharma companies is the major reason for inflated cancer drug prices [in India],” says Leena Menghaney, a lawyer with Medecins Sans Frontiers (MSF), a global humanitarian organisation that works towards making medical aid accessible.

A 2017 study in the medical journal, Oncotarget, compared the pattern of affordability of cancer drugs in seven countries – Australia, India, China, Israel, South Africa, UK, and the US. Comparing the cost of a basket of cancer drugs and the purchasing power of the country’s residents, cancer drugs were found least affordable in India. Besides, India has lagged behind in the discovery of new oncology drugs, which is another contributing factor to high prices.

Lowering drug prices, or capping them, is one solution to the pervasive problem of cancer drug affordability. But, pharma companies are accused of making huge profit margins by selling medicines to distributors at prices much higher than the cost of production. Often, the companies cite back-end research costs that have gone into the production of these new drugs. The problem arises when most of the companies are unwilling to be transparent about the costs.

When Novartis introduced Glivec in the Indian market, it was priced at Rs 1,25,000 (US$1,756). But after it lost the patent case, generics entered the market, which was priced at Rs 4,000 – 9,000 ($56 to $126). According to Yogendra Sapru of NPAA, “a new version is available, which costs only Rs 1,000 ($14). It’s easy to see how low the cost of the production must be for these drugs”.

During a legal battle over patent rights of its cancer drug Glivec, Novartis AG claimed that it had spent about 100 crores to introduce a new medicine in the market. But a closer look reveals that there are serious loopholes in the way the company claimed R&D costs of Glivec. The clinical trials were on a much smaller scale than what they claimed, and the company had benefited from tax reprieve. Throughout the legal case, Novartis claimed it did not benefit from the tax credits.

India’s drug market has mushroomed in the last decade. There is stiff competition between various drug manufacturers and therefore, to boost their sales, the pharma companies follow unethical marketing practices and lure doctors in different ways.

During a series of interviews with doctors and pharmacologists, it was found that domestic and multinational drugmakers routinely shower Indian doctors with gifts, international trips, and cash payments disguised as consultancy or other types of fees. Under Indian law, doctors are prohibited from accepting cash, gifts or travel from drug companies. Still, enforcement is rare.

“Somebody is doing something for you,” says a Delhi-based cardiologist who wish to remain anonymous. “Obviously, [if you take the gift] you would want to return the favour.”

As a result of these tactics of drug companies, either drug are dangerously over-prescribed or instead of the cheaper brands, the expensive brands are prescribed to boost their sales. This can be devastating for patients — physically and financially — especially, in a country where healthcare is mostly private and non-subsidised.

“Pharmaceutical drugs, which are available in retail markets, should be provided by the government for free as long as retail trade margins are uncontrolled,” says Menghaney. “So, the government can either bring in a mechanism to control trade margins or subsidise cancer medicines partly, if not fully.”

The problem of huge margins is very much present in the retail markets. Retailers are generally reluctant to sell cancer drugs due to the low frequency of sales, so the manufacturing companies offer huge commissions to these retailers.

“The commissions are reflected in the inflated retail prices which makes the medicines unaffordable,” said social activist Arun Gadre.

As one pharmacist points out that even when the manufacturing cost of a particular anti-cancer drug is less, middlemen who are involved in the distribution and retail sale of drugs are quite often responsible for high and indiscriminate variability of prices seen among various drugs.

The legal rules are lax even in the case of doctors accepting kickbacks from pharma companies to prescribe their drugs. In the 2014 amendment to Indian Medical Council (IMC) regulations, the punishment was introduced for the first time for doctors who engage in bribery.

According to the rules, the punishment varied from a warning to a 1-year suspension – depending on the amount of bribe involved. This amendment, according to some doctors will not lead to any significant impact.

The burden of proof is on the prosecutor until the prosecutor can prove a mismatch between the assets and known sources of income of the accused. But the Medical Council of India (MCI) is ridden with its own problems of corruption and inefficient policies.

However, the second aspect of the cancer cost economics is the shortage of oncologists in India.

In cases where Indians have resources for cancer treatment, they fail to have access to treatment. There are only 1,250 oncologists available for a population of 120 crore people in the country.

The shortage of oncologists means that 60% of all cancer patients are being treated by non-oncologists. The lack of access to resources to diagnose and treat cancer is a major hindrance to the equitable delivery of cancer care which is a result of poor diagnostics by non-oncologists and lack of diagnostic equipment.

Another problem is the concentration of oncologists in India. Almost 40-60% of the facilities and oncologists are concentrated in the top 7-8 metropolitan cities of India hampering equitable access to treatment.

According to Oncologist, Rajiv Gandhi Cancer Institute and Research, Delhi Dr Sajjan Purohit, the issue becomes more pertinent when we consider that about 80% of the oncologists are radiation oncologists. “There is a major dearth of medical and surgical oncologists, who are super-specialists,” said Dr Purohit.

Besides, a study by All India Medical Institute highlights that as many as 60% to 70% of cancer cases can be prevented if diagnosed early. While others can be detected early in their development stage, treated and cured.

In the end, it’s about how long can we afford to pay exorbitant prices of these anti-cancer drugs and treatments from our own pockets.