The Indian Healthcare System: Case Study of a Patient with Plexiform Neurofibromatosis
Farhad R. Udwadia
In this research paper, a case of plexiform neurofibromatosis (pNF) is presented along with an analysis of the two major setbacks of the Indian healthcare system, which are, a dichotomy of treatment options (treatment in private versus public hospitals), and the lack of effective social support organisations for the affected patients. The causes and effects of these issues has been discussed along with the need for better networking and support for patients affected with neurofibromatosis. The socio-cultural impact in India of disorders such as NF which cause a cosmetic disfiguration has also been discussed, hence supporting the need even more, of these community and social organizations to bring about an effective change.
Case study involves a female patient who presented to us at Sir J.J. Hospital, Mumbai, seeking treatment for a plexiform neurofibroma, which had resulted in the complete disfiguration of the left side of her face. A plexiform neurofibroma (pNF) is a tumour of a peripheral nerve, formed by the multiplication and expansion of all neural elements, resulting in a subcutaneous mass. Plexiform neurofibroma is a tumour that manifests in patients with Neurofibromatosis Type 1 (NF1), a genetic disorder that follows an autosomal dominant pattern of inheritance. It is estimated that 30-50% of patients with NF will develop a pNF.() This patient travelled from Uttar Pradesh to Mumbai in order to get her tumour treated. As a young woman, in rural India, the sociocultural implications of this disorder are very severe. For the vast majority of patients suffering from pNFs, the psychological trauma caused by the cosmetic and structural distortion is the most difficult aspect of living with a pNF. In several cases, the tumour impairs vital functions of the body, such as vision and blood circulation. Complications are grave, frequent and their treatment limited. Analyzing the problems faced by an Indian patient seeking surgical resection of a pNF, highlights the two major setbacks of the Indian healthcare system – the dichotomy in treatment options, and the absence of psychological and social support for the physically malformed.
MEDICAL AND ECONOMIC POINT OF VIEW :
The treatment of Neurofibromatosis Type 1 has been slow to develop in India. This is due to mainly the complex nature of the disorder. Typically, a patient diagnosed with a pNF requires routine check ups, which include, but are not limited to cutaneous examinations for other neurofibroma, hypertension work up, and evaluating renal artery stenosis. To remove the plexiform neurofibroma, a patient can either opt for a surgical resection or, more rarely, a non-surgical laser removal. Chemotherapy is used for pNFs that are metastatic or beyond the scope of surgery, which are rare and occur in approximately 4% of cases. Most surgical procedures in India that require advanced technology are usually only available at privately funded hospitals, which are beyond the reach of the majority of patients. Dr. Aadil Chagla, Professor of Neurosurgery at K.E.M Hospital, Mumbai, sheds light on this battle of extremes. “On one hand you have the government-run and funded hospitals that provide affordable healthcare to the masses, but lack advanced surgical equipment. At the other side of the spectrum, private hospitals capable of performing advanced procedures are often completely unaffordable to many of the patients that need them. What our healthcare system needs is some middle ground.” Thus, for this lower middle-class young lady seeking medical treatment in the metropolitan city of Mumbai, her options were quite limited. This patient could not find affordable accommodation close to the hospital. She had to spend days and even nights sleeping in the hospital’s hallways. The difficulties faced by her are representative of the thousands of patients that make their way to the various tertiary healthcare centres all over India. It can be argued that this patient was fortunate enough, as there are still a staggering number of patients who opt to sleep on the pavement or sell their possessions in order to finance their travel and stay. The treatment she could afford was far below the standards that private hospitals could offer. Dr. A. Tibrewala, a consultant plastic surgeon at Hinduja Hospital, Mumbai, remarked that few people could actually afford to have neurofibromas removed in private hospitals, where the surgical resection would be spread out over 2-3 surgeries, with a comparatively lengthy post-operative care. As a result, this patient had to opt for a public hospital, and had as much of her plexiform neurofibroma excised as was possible in a single surgical procedure. Her postoperative stay and treatment were made as short as possible due to the lack of available beds. To add to her woes, after three months she was called back for a second stage procedure for which she had to make another arduous journey, only to learn that the procedure was postponed due to a temporary shortage of facilities. These organizational and administrative problems are a common hazard that government run hospitals face, due to an overworked and overburdened healthcare system. In these cities specifically, public welfare hospitals are grossly overcrowded with patients, being their only affordable option, which results in these administrative setbacks.
This patient’s case of plexiform neurofibroma is one of a multitude that highlights the dichotomy present in the Indian healthcare system. This disparity in treatment options is growing at an alarming rate, as budgetary allowances for government-funded healthcare are not the priority. From 2011-2015, India’s expenditure on public health as a percentage of its GDP (gross domestic product), has been a dismal 1.3%. In relation to other countries, this is less than that of Afghanistan, Angola, Sudan and the Syrian Arab Republic, amongst many more. It lies at less than a fourth of the percentage of GDP spent by countries such as Germany, Canada, Sweden and Switzerland. This is further exemplified by a point made during a discussion at the Harvard School of Public Health in 2012. It was noted that India spent approximately $40 per person annually on health care, while the United States spent $8,500. It is integral that advances be made in the quality of tertiary care centres, which can only be achieved through an increase in expenditure. While these public healthcare centres are distributed across rural areas and severely lack resources, privatized and resourceful hospitals are concentrated solely in the urban cities. For example, the ratio of hospital beds to population is 15 times lower in rural areas than in urban areas. Even the ratio of doctors to population is 6 times lower in rural areas than in urban. These inequalities take its toll on the economically disadvantaged population, resulting in their further marginalization. We see that the further the private sector expands, the larger the inequality that seeps into society. It results in profitability overriding equality, and the provision of excellent service unaffordable to the common man. Current proof on the extent of marginalization of lower and middle classes can be seen through the field of medical tourism. Medical tourism is one of India’s fastest growing sectors, with an expected growth rate of 30% annually. This massive expansion is due to the increasing availability of world-class technology in private hospitals across urban India. At these hospitals, complex surgical procedures are performed with results comparable to international standards. The very fact that these procedures are affordable to middle class citizens from beyond India’s borders, but are yet beyond the financial grasp of majority of Indians, highlights the extent of marginalization of healthcare in India.
SOCIAL POINT OF VIEW
As with many patients, pNF results in a severe cosmetic deformity. These anomalies often cause patients to experience emotional and psychological trauma, which results in their isolation and withdrawal from society. Counselling and support groups are absolutely imperative in maintaining the psychological well being of these patients. With the increased awareness given to mental health in the developed world, many of these options are available in countries like the United States, Canada and the UK. However, the lack of awareness for Neurofibromatosis Type 1, coupled with the under-appreciated value of mental and social support in the Indian healthcare system, makes living with a pNF in India all the more difficult. A vast majority of the rural public remains largely unaware of many medical disorders and their symptoms. For example, according to the doctors that treated this patient, many of the patients that have come to have their neurofibromas treated, believe that their pNF is due to a karmic imbalance from a past life, or a bad phase in the lunar cycle. It is these kinds of superstitious beliefs that lead to the lack of societal empathy for the condition and a resulting social stigma and sometimes even ostracization. For example, it would not be uncommon for someone with a pNF to be disallowed from visiting a local temple. Worse still, people with pNFs are very often unable to find work. Young women find it impossible to find a groom, which is a stigma in a society that places a high priority on marriage. While pNF patients can look drastically different from the normal, they nearly always have the same capabilities and capacity for work. Therefore, awareness for the condition is absolutely imperative to defeating such discrimination. The emotional turmoil that results can be psychologically disastrous for the patient. It has significant affect on their position in society, and often results in them becoming completely reclusive. For this patient, pNF proved to be an immense obstacle to normal life. Patients that suffer from pNFs and similar medical conditions, could greatly benefit from the availability of support structures within the healthcare system.
Neurofibromatosis Type 1 occurs in 1 in 3000 births, which makes it more common than cystic fibrosis, Duchenne muscular dystrophy and Huntington’s Disease combined. Yet, the common man has probably heard of one of the three conditions, but not of NF1. With relatively low global awareness, the growth of support structures has been slow, till recent years. In 1981, families diagnosed with neurofibromatos is established the “Neurofibromatosis Association” in the United Kingdom. Four years later, the “Neurofibromatosis Society of Ontario” was established in Canada, with the mission of “supporting NF people and their families, educating the public and medical profession.” The United States has its own, the “Neurofibromatosis Network” and many more. When asked about the effect such organizations would have on NF communities in India, Dr. Tibrewala, who has treated several patients with pNFs, confidently stated that “they would make a world of a difference.” On the topic of effectiveness, John Huynh, President of the Neurofibromatosis Society of Ontario (NFON) said, “For the patient, support structures such as these can help provide immense positive reinforcement for an individual with NF. It instils a feeling of belonging, care and love.” India has still to develop a registered NF support organization of its own. The existence of such an organization, will greatly improve the quality of life for patients suffering from NF, and raise awareness for the condition in India, which is desperately needed.
Through this case study, we can observe and understand the very prevalent setbacks in the Indian healthcare system. It is important to note however, that while the Indian healthcare system has its faults, it has its strengths as well. Treatment is effective, waiting periods are fast moving or non-existent, doctors are highly trained and experienced, and drugs and various medications are relatively affordable to the masses. While options for surgical procedures are limited to the common man, the middle and upper class has access to world-class facilities. One aspect that needs prompt review is its outlook on mental health, palliative care, and the awareness of diseases such as Neurofibromatosis Type 1, which require an extensive social and psychological support framework.
As stated above, this story is representative of thousands of lower-middle class Indians, seeking treatment in urban tertiary care centers, from all over the country. It is important to note, that no amount of facial reconstructive surgery will ever render this patient’s face close to what was its previous morphology. Her treatment is still in progress, a process that could have been made much easier if she could benefit from the support of an organization in her community. The importance of these initiatives simply cannot be understated. They are imperative in teaching patients that there is life beyond neurofibromatosis, one that is not worth living in recluse. Patients with neurofibromatosis, even Type 1, that suffer drastic disfiguration in their appearance, are almost always capable of living fulfilled, functional, and working lives. Through the ages, in a society where people are different, because of the color of their skin, sexual orientation, or mental stability, they tend to lead isolated lives. However, what catalyzes their integration into a community is an awareness of their disorder, and support from others who share their experiences. Thus, for patients who suffer from the psychological and social trauma of living with a pNF, the aid of a local, community based support organizations is crucial to improving their quality of life.
McGill University Montreal, Canada.
- Abbas O, Bhawan J. Cutaneous plexiform lesions. Journal of Cutaneous Pathology. 2010; 37:613–623.
- Hsieh DT. Neurofibromatosis Type 1 Treatment & Management. Medical Care, Surgical Care, Consultations. Medscape, 30 July 2015. Web. 20 Jan. 2016.
- Sorensen SA, Mulvihill JJ, Nielsen A. Longterm follow-up of von Recklinghausen neurofibromatosis survival and malignant neoplasms. The New England Journal of Medicine. 1986. 314:1010-15.
- Chagla A. Personal interview. 27 Dec. 2015.
- Tibrewala A. Personal interview. 4 Jan 2016.
- Health Expenditure, Total (% of GDP). Rep. N.p. The World Bank. Web. 29 Feb. 2016. <http://data.worldbank.org/indicator/SH.XP D.TOTL.ZS>.
- Health Expenditure, Total (% of GDP). The World Bank. Web. 29 Feb. 2016.
- Feldscher K. Experts Discuss Similarities, Differences between U.S., India Health Systems. News. Harvard School of Public Health, 14 Dec. 2012. Web. 01 Mar 2016.
- Deogaonkar M. Socio-economic inequality and its effect on healthcare delivery in India: Inequality and Healthcare. Electronic Journal of Sociology. N.p., 2004; Web. 20 Jan 2016.
- Hamid Z. The Medical Capital’s Place in History. The Hindu. N.p., 19 Aug. 2012. Web. 01 Mar 2016.
- Evans DG, Howard E, Giblin C, et al. “Birth Incidence and Prevalence of Tumor-Prone Syndrome” American Journal of Medical Genetics Part A. 2010; 152A:3 27.
- Huynh, John. Personal interview. 13 Jan 2016.