Cardiorespiratory disabilities and social security: why India should move very cautiously

This is an invited commentary on an article later in this issue by Mishra and Sharma. The authors present a detailed categorisation and certification of cardiopulmonary disability for social benefits. Unfortunately, they have not applied the rigueur that was suggested in the 1981 report for cardiac patients in India [1] before formulating disability criteria.

We need to have data on the total afflicted population; the quantum of preventable cardiac and pulmonary disease; the quantum of existing support system through state, central, and non-governmental organisations (NGO); professional bodies; and impact of programmes and initiatives already in place as in manual for doctors [1], project report of Jai Vigyan Mission Mode Project (JVMMP) [2] for spreading awareness on eradication of rheumatic fever/rheumatic heart disease (RF/RHD), lifestyle modifications, and anti-tobacco initiatives, etc., initiated by the central and various state governments.

We need national epidemiological surveys and population decennial census subgroup analyses and reports of health. Professionals from across the spectrum involving several government departments, epidemiologists, statisticians, public health census data analysts, and representatives of all stakeholders need to be recruited for such an exercise. Some of the information is already there in disparate agencies. It needs to be systematically collated, analysed, and fed into a database. Only government or large stakeholders can undertake such a coordinated survey. As was done earlier [1], involvement of the World Health Organisation (WHO) can give it more thrust. That has to be the starting point.

The Act 49 of 2016 [3] was several years in the making and did not include cardiopulmonary disability probably for good reasons. In its exhaustive report on global disability, the WHO has emphasized that inequality is a major cause of poor health and hence of disability [4].

In an excellent review of global burden of congenital heart disease, Hoffman from University of California, San Francisco’s Cardiovascular Research Institute [5], had this to say: ‘Prospects and potential solutions: The issues are so complex that it is difficult to know where to begin. Poverty, the greatest barrier to successful treatment of congenital heart disease, has multiple causes that are complex and difficult to remove. Natural resources may be inadequate or, where resources…exist, corrupt and inefficient governance may prevent fair distribution. This is often compounded by limited education of the population, including its leaders, by unfair trade practices of the developed nations,….’ (italics mine).

Cardiovascular and thoracic surgery (CVTS) dominated the twentieth century innovations in technology and surgical treatment strategies. Developments in the specialty had a multiplier effect on the growth of other surgical and medical specialties. When India opened its economy in the 1990s, there was a rapid growth in imported technology for everything including less invasive—interventional, endoscopic, and other minimally invasive procedures, cardiac and cardiopulmonary support devices, and transplantations. Big business became involved and fast-paced technological improvements of the first world dominated the scene in urban India.

Costs of healthcare rose manifold in India and other aspirational countries which could ill afford this expense [6]. It was largely driven by blind adoption of imported high technology and the profit motive of the diverse health partners. ‘Guidelines’ and ‘standards of care’ invaded day-to-day practice at a fast and furious pace. Clinical medicine for preliminary diagnosis at all levels was largely neglected. Dr. Abraham Verghese had sounded a timely warning over a decade ago [7].

It was important for professional associations and administrators during that period, to advise the government and the courts, that the guidelines are mostly based on research in the super-rich countries (with their top of the class infrastructure and resources), on overfed citizens with unacceptable lifestyles and that it is patently wrong to apply these guidelines to countries ridden with gross economic and geographic inequities of infrastructure and wealth distribution. India is a prime example. The WHO Commission on Social Determinants of Health [8] suggested that inequity is the result of ‘a toxic combination of poor social policies and programmes, unfair economic arrangements, and bad politics’. Their three ‘overarching recommendations were (1) improve daily living conditions; (2) tackle the inequitable distribution of power, money, and resources; and (3) measure and understand the problem and assess the impact of action.’ That perhaps should be another starting point in respect of disability and social security.

The rapid advances in CVTS in India in the 1970s to the present day are there for everyone to see. It would have been a cause for celebration if geographic and socio-economic inequity were not so glaring. But as is evident, vast geographic areas of the world, India included, do not have the resources to provide (i) potable water, (ii) feed and give shelter to their poor, (iii) primordial prevention of diseases both communicable and non-communicable, (iv) primary healthcare, (v) education, and (vi) round the year employment (the list is longer). All these basics are vital to the health /‘disability status’ of an individual.

India has done well since independence [9] given its huge problems but not enough to address the health problems of nearly 60–70% of the population in underserved areas. Traditionally, India had a great strength in its clinical medicine. The very important role a family physician played in healthcare delivery in the underserved areas cannot be overemphasized. Invasion of high technology and the commission-based cut-practice completely destroyed this vital healthcare link. India also had managed to keep costs down through local innovations, without compromising on the quality of care.

As Kumar [10, 11] rightly pointed out, in regions with high infant mortality rates (IMR), resource-intensive paediatric heart care is perceived as less of a priority. Readily preventable causes of IMR have to be addressed first. It is pertinent to quote Krishna Kumar, ‘The huge gulf between resources and disease burden has not surfaced in our collective consciousness and clearly does not figure enough in our academic deliberations.’ This has to change. When the purse is small, prioritisation and focussed spending of limited resources are essential. Cardiopulmonary disability grading and social security are not vital issues at this stage of our national development.

Despite demands on more important primary responsibilities of a vast densely populated country, governments of the day in India have been generous (sometimes overgenerous) in providing financial and logistical help (say even for organ transplantation, etc.) to innumerable patients suffering from these diseases. We need a thorough audit of the considerable expenditure on such financial assistance since the 1970s.

For employment/education/training, etc., every person selected for any employment/education/training in India has to go through a Medical Review Board of the institution/government and the board is legally constituted for the purpose. The experts are not bound by the gradings/scores, etc., unless it is part of government guidelines. Where there is no infrastructure, concerned specialist has the freedom to do such examinations as much as possible to determine disability. All corporate entities also have similar procedures. It is only the unorganized sector that does not have and cannot be forced to comply with such recommendations, regardless of any scoring or law!

It is pertinent to paraphrase here from Social Security Disability Programs and Procedures [12] in the United States of America (USA). The statutory definition of disability used to decide if a claimant should receive disability benefits is strict—essentially, it requires an adult claimant to have a medically determinable impairment or impairments that prevent the ability to work for a continuous period of not less than 12 months or is expected to result in death. An individual with partial or short-term disability is not entitled to social security disability benefits. Therefore, even many individuals with severe impairments that limit, or even prevent, their ability to perform their usual work will not be entitled (italics mine).

The Listings standard is stricter [13] because the purpose of the Listings is to describe impairments that are severe enough to prevent an individual from doing any work without even considering his or her age, education, or work experience. The Social Security Administration (SSA) in the USA will not pay for expensive, invasive, or risky procedures that would otherwise be useful in diagnosis and assessing impairment severity, such as coronary angiography and advanced imaging. Even a wealthy country like the USA with a much sparser population density applies such rigueur; surely we have to move more cautiously. Australian recommendations are also equally stringent [14].

Almost all the points the authors make in the ‘methodology’ to justify their push for declaring cardiac disability status for social security benefits are not remedies/reasons, namely.

1. Reluctance to timely referral of a patient for intervention—remedy is to spread awareness, teach, train, do, and counsel.

2. Post-cardiac surgery denial of non-cardiac surgery in smaller hospitals because of wrong notion that they are high risk—again the remedy ought to be proper mentoring and instilling confidence to accept any challenge as an opportunity. Of course, renewed efforts to prevent atrocities on medical professionals working in underserved areas cannot be overemphasized. Mere label of a low risk is not going to make any difference in the highly litigious society we have created by following/publicising imported guidelines that ill suit our infrastructure and human resources.

3. Debt entrapment due to prolonged hospital stay, costly aftercare, and distressed financing are all true. But the remedy is not a social security umbrella. The remedy is in re-organising our healthcare delivery system: emphasizing clinical examination at rural/sub-divisional hospitals, scheduling appointments in referral centres, using information technology (IT) at subdivision hospitals, providing mobile services and telephonic advice, ensuring quick attention during visits, capping of costs, using indigenous technology/procedures and expertise, and shunning fashionable interventions (e.g. shunning balloon mitral valvuloplasty (BMV) for more effective and cheaper transventricular mitral commissurotomy (TVMC) for isolated rheumatic mitral stenosis, shunning multiple imported stents in place of the time tested off-pump coronary artery bypass grafting (CABG), and many others). In the presence of overwhelming evidence to the contrary from developing countries like India and others [15–26], it is sad that in an otherwise well-researched and painstaking study, consensus guidelines such as ‘…Mitral stenosis: suitable cases with pure mitral stenosis must be treated with BMV. The patients unsuitable for BMV may need valve repair or replacement’ (italics mine) are advocated [27]! It is such biased guidelines that are part of the problem. It is disconcerting that the writing committee included a professional who has been a long-time votary of removing disparities and adopting innovative and cost-effective treatments [6, 10, 11, 27].

   India now has a very good penetration of relatively inexpensive mobile phone technology even in remote areas and it can be improved further. The rural hospital or sub-divisional hospital could be used as a medical IT hub as most cardiac, pulmonary, and vascular imaging systems lend themselves to be transmitted electronically for an effective tele-assessment/telemedicine. As professionals, we have it in us to take many initiatives.

4. Psychology and psychiatry have long been neglected issues. Dwindling size of families, breakdown of erstwhile community and family support systems, and the ‘I, me, myself’ alien culture, probably, are here to stay. Social scientists need to be pro-active; doctors also need to be more empathetic, spend time with the patients to counsel, and address the feeling of depression or helplessness.

5. Denial of jobs, etc., is not specific to cardiac disability. It is a question of demand and supply of skilled human resources. It happens all the time globally because of various pulls and pushes—it is also a question of how ethical and professional are professionals, sitting on selection panels. If anything, a disability tag worsens the situation. A good deal depends on how professionals caring for the cardiac patients counsel the parents, family, and the patient on what to expect after surgery and the importance of getting back to work within their capacity. The remedy certainly is not giving them a label of disability.

The authors touched on the prevention of an eminently preventable scourge. Renewed efforts are urgently required for vastly increasing the manufacture and proper free distribution of Benzathine Penicillin 12 lac units for secondary prophylaxis of acute rheumatic fever (ARF) and rheumatic heart disease (RHD). Community health workers, rural nurses, and physician assistants at all hospitals need to be trained to administer these deep intramuscular injections safely after proper skin test to patients who have been prescribed this life and heart-saving simple treatment. We have the infrastructure already in place. A health ministry directive and a little teaching and training and monitoring are all that are required.

In the short term, available data from government agencies like labour department, railways, shipbuilding and ports, surface transport, airlines industries, agriculture labour, and cross-sectional community health disability surveys have to be collected, fed into a computer database, and analysed.

Eradication or adequate control of preventable diseases, restriction on blind copying of proven bad lifestyles, etc., use of medical termination of pregnancy (MTP) as already provided for some genetic or hereditary congenital heart diseases and many such interventions need to be implemented as a priority before executable disability guidelines can be framed for a vast and diverse country of 1.35 billion (≈ 135 crores) population. The real problem is poverty, malnutrition, and rampant corruption depleting scarce resources.

As highly educated professionals, we cannot have a myopic view of the nation’s priorities. This quote from Kumar [10] is pertinent ‘A number of issues will need to be deliberated upon and implemented as a national consensus. Practice guidelines recognizing our resource limitations will need to be developed….Regulations and audits on how insurance and government subsidy is distributed are urgently needed to ensure equity.’ ‘Simultaneously, a number of basic initiatives to reduce costs of care should be pursued. These include training manpower locally, continued efforts toward cost containment through appropriate treatment strategies and development of indigenous technology’ (italics mine).

We know that national missions on prevention of all preventable cardiovascular diseases, e.g. ARF/RHD, coronary artery disease (CAD), hypertension, childhood obesity, diabetes, heritable and syndromic congenital heart diseases, and a kind of universal health coverage (Ayushman Bharat mission), are being prioritized. The JVMMP project on ARF/RHD spanning 10 years 2000–2010 and the report published in 2015 need to be acted upon [2, 28].

The next census as on January1, 2021, is due. Work has started. The time may be appropriate to get a high-powered committee of the Central Government involving all the stakeholders and the National Sample Survey Organisation (NSSO). Such a committee can frame a document based on collated data, estimate quantum of resources required, and present a report of the audit of all healthcare assistance provided by various central and state agencies in the last five decades. The committee needs to suggest equitable methods of distribution, controlling costs, encouraging/supporting indigenous technology, and improving hospital services through mobile technology, etc.

Unfortunately, the last 15–20 years have been disappointing with the gradual death of clinical medicine and invasion of inappropriate guidelines in day-to-day practice. A strong initiative to keep costs down needs to come from the government, the medical, and the legal profession and to not force defensive medicine on the healthcare providers especially doctors and nurses and paramedics.