State of Healthcare in India
India is a country of more than 1.2 billion people comprising 28 states and seven union territories. There are 14 official languages in addition to Hindi and English, and within those languages numerous dialects.
Consequently, it’s not surprising that India’s healthcare system is somewhat reflective of these differences: each state and union territory has its own healthcare system with its own healthcare priorities and medical schemes.
Enter Vandana Gupta of the V Care Foundation in Mumbai whose goal is to ensure that patients with cancer get the help they need. But it’s not an easy task. V Care provides free help, awareness and education to patients with cancer and their families through outreach programmes and services that improve the quality of their lives and offer hope.
So what are the challenges that Vandana and her team face when trying to provide care for those with cancer? Depending on where Indians live can have a huge impact. With 80 per cent of the population living in a rural area one could logically expect that’s where most of the healthcare services would be provided. Not so.
“There are not as many qualified doctors and there may not be a doctor available for 200 miles,” Vandana said. And even if there is a doctor available, by the time a cancer diagnosis is made, the patient may already have late-stage disease.
In an effort to counteract the doctor shortage, 10,000 doctors are being trained but there is no guarantee that they will stay in India once their training is complete as, in the past, many have left India to practise elsewhere. While doctors pay for their training, it is heavily subsidised by taxpayers.
Compounding the lack of doctors is that treatment centres may not be available or easily accessible. But the biggest issue is affordability. As a result, Indians resort to using a mix of homeopathy and western medicine.
“Many Indians believe that homeopathy has no side effects and, because it’s cheap, they feel that’s the way to go,” said Vandana.
Rural inhabitants tend to see a Vaidya, a practitioner of Ayurveda medicine who then prescribes Ayurevidic medicines. Ayurevidic medicine is one of the world’s oldest medical practices originating in India about 3,000 years ago and it remains one of the country’s traditional healthcare systems. For more information about Ayurevidic medicine click here.
To deal with the lack of medical resources, in 2005 the Indian government sent more than 700,000 Accredited Social Health Activists (ASHAs) to rural areas. While this did have a positive effect and is still in place, it is under-resourced with ASHAs receiving very little compensation. ASHAs are local women who are trained to be health educators and promoters in their community. Their tasks include treating basic illnesses and injuries by means of first aid and improving village sanitation. They are also meant to be a major communication channel between the healthcare system and rural populations.
“Once they (ASHAs) are trained, many don’t want to continue this kind of work and want to move to the big cities to do something more lucrative,” said Vandana.
Public Healthcare Under-Resourced
India has both public and private healthcare. However, the public healthcare system is woefully under-resourced. There are only 27 dedicated public cancer centres for 1.2 billion people. While the government has promised to add another 50 centres in the coming years, it is felt that this will be inadequate for the needs.1 India has 2.8 million patients with cancer of which two-thirds are diagnosed at an advanced stage of their disease.2
To access the public healthcare system, Indians require a health card. This card entitles them to free medical advice. There is, however, usually a very long waiting list before patients can see a doctor to obtain the needed advice.
While doctors prescribe treatments as well as tests, it may not be possible for patients to get them because of the cost. While the tests are to be subsidised by hospitals, they may not help pay for them. For those who cannot pay for their treatment, there are many charitable trusts who try and help. However, charitable trusts are primarily located in urban centres and, according to Vandana, the size of the city will also likely determine the number of charitable trusts available.
“There are likely to be more charitable trusts in Mumbai than in Delhi or Kolkata,” she said.
For a patient to obtain help from a charitable trust, the patient cannot already be receiving care through a private facility. In addition, the patient must be in the lowest payment category or below the poverty line. According to the Twelfth Five Year Plan published by the Planning Commission of the Government of India, the poverty line for a family of five living in an urban area is INR4,800 (US$96) per month and for those living in a rural area it is INR3,900 (US$78) per month.3
The process and forms are extensive and difficult for many. Based on the information the patient provides, the charitable trust then determines how much assistance will be provided. The length of time the charitable trust takes to review applications depends on the trust.
“At V Care, the application is processed immediately,” said Vandana.
For those living in a rural area who wish to obtain help from a charitable trust, they need to obtain a certificate from the sarpanch, the elected head of the village. The certificate indicates the patient’s income category.
Those who are working and whose employer is part of the Employees’ State Insurance Scheme (ESIC), can receive medical assistance. Both employers and employees make contributions to the scheme. ESIC comprises a network of hospitals, dispensaries and diagnostic centres. As of January 2012, 60 million Indians were entitled to receive benefits from the ESIC.4
Government trusts are available but it can be a long wait before assistance is provided.
“It can be one month or three to four months,” said Vandana.
The Ministry of Health and Family Welfare has three funds that can provide help:
- Rashtriya Arogya Nidhi (RAN)
- RAN (Health Ministers Cancer Patient Fund, MHCPF)
- Health Ministers Discretionary Grant (HMDG).5
To obtain financial assistance through the MHCPF, for example, the patient must be below the poverty line, have cancer, receive treatment in one of the 27 regional cancer centres only, not have already incurred any medical expenses and the financial support cannot be used where cancer treatment or facilities are available for free. Central government, state government and public sector employees are not eligible for financial assistance from this fund. While there is no upper limit to the financial assistance provided, each case is reviewed by a Technical Committee that makes recommendations as to the amount of assistance that should be provided.5
While India does not have a universal healthcare system, it does have a National Formulary or National List of Essential Medicines which is part of the MHFW. The MHFW reviews reimbursement applications and makes funding decisions following which the drug is added to the formulary. In 2011, the last time the formulary was updated, among the drugs added to the formulary were carboplatin, chlorambucil, dacarbazine, daunordubicin, imatinib (Gleevec/Glivec) and oxaliplatin.6 However, of the 60,000 to 80,000 branded drugs available in India, the essential drug list contains only 348.7
Once a drug is added to the formulary, it is likely that it will be more readily available in urban areas than rural ones. Sometimes the therapies listed on the formulary may not be available but the patient will only find this out when going to fill the prescription. In that situation, the patient has to return to the prescribing doctor who will either prescribe something else or contact the pharmaceutical representative who will then make the therapy available.
Language and Stigma of Disease
Language is an issue in rural areas. Given the multitude of languages and dialects that abound, people prefer to stay where they are rather than going elsewhere for treatment which likely means they may not receive optimal care.
One of the biggest stumbling blocks that Vandana sees when caring for people with cancer is the stigma they attach to cancer.
“No one wants to get diagnosed with cancer as it is a huge stigma and, in this culture, it is seen as a patient doing something bad in their past life or they may think it’s infectious,” she said.
V Care’s goal is to ensure that people know that treatment is important and that with treatment, there is a high possibility they may survive cancer. Three-quarters of cancers are related to lifestyle issues such as smoking and chewing tobacco. The top five cancers among men are lip/oral cavity, lung, stomach, colorectal and pharynx; among women, the top five cancers are breast, cervical, colorectal, ovary and lip/oral cavity.
“If there was greater awareness, 50 per cent of cancers could be stopped,” said Vandana.
To get around some of the challenges in rural areas, Vandana and her colleagues from V Care respect the local customs with their dress and ensure they have a local translator to deliver their messages, as well as assist in describing information about their care.
Four Challenges with Healthcare System
The issues facing those living in rural areas stem from larger ones at the national level. Vandana noted four challenges confronting healthcare in India:
- Lack of regulations and accountability;
- Social inequality;
- Shortages of skilled medical professionals;
- Lack of affordable care.
Regulations and Accountability
While there is a national regulatory review body (the Central Drugs Standard Control Organisation) that reviews all new drug applications with the final marketing authorisation being provided by the Drugs Controller General India, a report noted that of 42 new medicines approved, 33 of them had no scientific evidence to show they were effective and safe, and no clinical trials were conducted for 11 of them.7
In many states, chief medical officers, district medical officers and directors of health services are appointed and keep their positions by paying “rent” which is financed, in turn, by these appointees demanding that junior officers and vendors pay them rent. Consequently, appointments are not necessarily based on ability but on connections.7
Another concern for Indians is how the paperwork for government-funded assistance is processed. For example, in Maharashtra, a state in the western region of India, any patient with cancer can apply to the Rajeev Ghandi scheme for assistance; however, ways are found not to process the papers and thus avoid distributing the necessary funds. For example, Vandana said that if someone lives in a rural area and goes to Mumbai they won’t necessarily have the right papers with them. In that situation, the patient either has to then arrange for someone to send them the necessary papers or go back to the village to get them. And once the papers have been obtained, they then have to be notarised.
“And that’s how the process becomes very cumbersome. You have to be very persistent to get help,” she said.
Each public hospital has a Medical Social Work department whose job is to help patients obtain the care they need including helping with the necessary paperwork. In addition, these departments also look for ways to reduce costs for patients. V Care works closely with Medical Social Work Departments to assist patients.
Social Inequality’s Deleterious Effects
Social inequality occurs on a number of fronts. Certain groups of people are likely to face greater inequalities than others because of their caste. Even though the caste system has undergone significant changes since independence in 1947, it still plays a role and groups such as the Adivasi and Dalit are particularly affected. The Adivasi are a heterogeneous group of ethnicities and tribes (more than 50 million people) who speak over 100 languages and who vary greatly in ethnicity and culture.8 While there are language differences, there are similarities in their way of life and they are generally viewed as being inferior in Indian society.
The Dalits, traditionally regarded as untouchable, comprise numerous social groups and are seen as the lowest rank in Indian society. Untouchables are outcasts who are considered to be too impure and too polluted to be ranked as worthy beings. According to the International Dalit Solidarity Network, there are more than 200 million Dalits in India. They are confronted by inequalities at almost every level from access to education and medical facilities to restrictions on where they can live and the jobs they can hold.9
A person’s sex can be a discriminatory factor.
“The man is viewed as the superior human, more so in rural areas than urban; therefore, when it comes to treatment, preference would be given to the man rather than the women, especially if resources are limited,” said Vandana.
This observation is supported by the United Nation’s Human Development Report published in 2013 in which India was ranked 136th out of 186 countries in terms of gender equality. According to the report, Pakistan, Nepal and Bangladesh, which are poorer than India, all do comparatively better than India in terms of gender equality.10
Skilled Staff Shortages
The lack of skilled medical professionals also affects the quality of healthcare. It is estimated that 40 per cent of Indians rely on public healthcare for inpatient care. Yet, many rural areas either do not have facilities or where there are facilities, they are dysfunctional because of doctor and healthcare worker shortages, as well as inadequate supplies of medicines and other health supplies. Consequently, services that should be part of the public system are not always available resulting in poor quality of care.7
Given the inadequate care provided by the public sector, a large number of Indians go to private facilities to access the care they need. Private care accounts for 80 per cent of outpatient and 60 per cent of inpatient care in India. The cost of using the private system is borne by the patient and while this is an option for those who can afford it, for the poorest segments of society, private care is not an option.7 However, Vandana explained that even those who cannot afford private care will often make sacrifices, especially if there is a delay in getting treatment from the public sector.
“Once you go to a private hospital, then it gets very difficult to get help from the public sector. It’s better to go to a charitable trust rather than try private care first,” she said.
Government officials receive their care through private practice and, according to Vandana, they receive the best of everything. For those in the army, navy and air force, there are hospitals specifically for them.
While there are many healthcare schemes available to help patients, they are not widely known to the public as information about them is not published and, as a result, they are under used. For example, the Brihanmumbai Municipal Corporation in Mumbai has introduced a programme, starting April 1, 2014, whereby for every female child born, INR15,000 (US$300) will be deposited into a bank account for that child. The money can be withdrawn by the girl when she turns 18 and it can only be used for college education.11 While this sounds promising, Vandana’s concern is that as many people cannot read and if the issue is not of immediate concern, they will not be aware of the programme.
With a general election coming in 2014, Vandana thinks that the government will make more of an effort to talk about the programmes it has available and how it cares for the people. To this end, the government just passed (February 21, 2014) an amendment easing restrictions on the availability of morphine. Until now, only a few centres had access to morphine.
“We’re hoping it will be easily accessible throughout India; but we have no idea how long it will be before the amendment goes into effect,” she said.
Prior to the amendment, the availability of morphine and other opium-derived therapies was severely restricted in most states. Now, 20 years after the palliative care sector started campaigning for the rights of patients to receive pain-relief therapies, the amendment should simplify regulations for the issuing of licences to manufacture, sell, purchase and store these products.12
Those who are poor are the most affected by the cost of healthcare and are less likely than those who are wealthy to seek care when they are ill. This difference is more noticeable in rural areas.13 And, while the cost of therapies may be lower in India than in other areas of the world, for the average Indian they are still too expensive.
In an effort to improve the funding of core services, the government introduced a new Companies Act in 2013 making it mandatory for companies making a profit of INR5 crores or more (US$1,000,000) to spend at least 2 per cent of their average profits in the last three years on corporate social responsibility (CSR) activities. The bill lets companies decide which CSR activities they wish to invest in. Companies not complying have to provide explanations and may face penalties.14 It is estimated that 8,000 companies will be affected by the new Companies Act and that the annual spend could be the equivalent of US$1-2 billion.15
CSR activities include community improvement programmes such as maternal and child health services, family planning, education, healthcare, sanitation, environmental sustainability and employability.
“While this sounds good, my concern is that companies may invest in their own charities rather than existing ones,” Vandana said.
The Companies Act only went into effect at the beginning of 2014 so it’s unclear exactly how Indians will benefit.
Optimism in the Face of Challenges
In spite of these daily challenges, Vandana remains optimistic.
“Our treatment success rate is the same as anywhere else,” she said. And, she went on, “Patients who’ve gone to elsewhere have been told there is better expertise in India because doctors see way more patients than US doctors.” Vandana estimates that doctors working in non-private hospitals see between 50 and 100 patients a day.
In the 20 years that V Care has been around, the organisation has not seen any patient go home without treatment.
“We have so many challenges but we are still better than the best,” she said.
Call to Action
While Vandana is optimistic, the Lymphoma Coalition and the V Care Foundation call upon the government to make a concerted effort to not only improve access to healthcare for all Indians, especially those living in rural areas, but to also make it more affordable. In addition, the government, both at the national level as well as state and union levels, need to take steps to promote the healthcare schemes that are already in place so those who are in greatest need can benefit.
Based on Globocan 2012 data, the incidence of Hodgkin lymphoma (HL) among Indian males was 5,677 per 100,000 and 2,938 per 100,000 in Indian females. In terms of mortality for HL, 2,938 males per 100,000 died and 1,404 per 100,000 females died. With non-Hodgkin lymphoma (NHL), the incidence among Indian males was 15,884 per 100,000 and 7,918 per 100,000 among Indian females. The rate of mortality among males for NHL was 11,071 per 100,000 and 5,526 per 100,000 for females.16
About V Care Foundation
V Care Foundation was founded in 1994 by Vandana. Established in Mumbai, the guiding principle of the foundation is that every cancer patient deserves access to a holistic, healing environment. Vandana, a 21-year HL survivor, is committed to giving patients and their families the emotional support they need through the cancer experience, and ultimately, the rest of their lives. She acknowledges that while doctors heal the body, V Care helps nurture the patient’s mind and spirit.
V Care provides information and resources that cancer patients and their families need to make informed decisions about treatment and help them through the cancer experience. V Care helps spread the message of survivorship and quality of life after cancer. V Care also arms communities with early detection and cancer prevention resources to help reduce cancer risk.
V Care events, programmes and other activities allow cancer patients, survivors, family and friends, and volunteers to take an active role in the fight against cancer. Today, V Care reaches more than 4,000 cancer patients annually, but there’s a need to do more.
The V Care Foundation can be reached at:
A-102, Om Residency
J.W. Road, Near Tata Memorial Hospital
Opp. Bhoiwada Court, Parel, Mumbai – 400 012
Telefax: 022 – 24141856 Helpline: 98219 49401 / 98219 49402
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2. Sharma DC. Palliative care in India suffers due to cumbersome rules. Lancet Oncol 2014;14:e54.
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10. Human Development Report. http://www.undp.org/content/undp/en/home/librarypage/hdr/human-development-report-2013/. Accessed March 12, 2014.
11. IndiaToday. http://indiatoday.intoday.in/story/bmc-to-award-rs-1-lakh-to-every-girl-child-born-in-civic-hospitals/1/345879.html. Accessed March 12, 2014.
12. Scroll.in. http://scroll.in/article/one-achievement-of-indias-least-productive-parliament-amending-narcotics-act-to-help-cancer-patients?id=657603. Accessed March 12, 2014.
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14. Firstbiz. CSR mandatory with passage of New Companies Bill: All you need to know. http://www.firstbiz.com/corporate/csr-mandatory-with-passage-of-new-companies-bill-all-you-need-to-know-45227.html. Accessed March 12, 2014.
15. indiacsr. The new Companies Bill – a new dawn for Corporate Social Responsibility (CSR) in India. http://www.indiacsr.in/en/?p=12066. Accessed March 12, 2014.
16. Globocan 2012: estimated cancer incidence, mortality and prevalence worldwide in 2012. http://globocan.iarc.fr/Default.aspx. Accessed March 12, 2014.