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VANDANA GUPTA

India,

Learning from her personal experience as a cancer patient, Vandana Gupta has built a series of coping mechanisms to help people survive cancer in India, a society where few systems exist that offer support for cancer patients and their families.

This profile below was prepared when Vandana Gupta was elected to the Ashoka Fellowship in 1998.

Fellow Sketch 

Learning from her personal experience as a cancer patient, Vandana Gupta pioneered a series of coping mechanisms in 1998 to help people suffering from cancer in India.  Through her organization, V Care, Vandana helped address a crucial need given few systems exist in India that offer support for cancer patients and their families.

Vandana has developed a unique voluntary support group primarily run by a group of volunteers who are cancer survivors or caregivers themselves and provide emotional support to cancer patients and their caregivers. She has created a strong peer support system where emotional needs are well understood owing to the nature of the model. Through financial support to cancer patients, V Care’s school for children with cancer, drop-in meetings, a 24/7 helpline and counselling, she is building coping mechanisms where they are critically required. For example, at their school for children suffering from cancer, recreational activities are organized to improve the patient well-being. And, by sharing information on support group programs and methodology of their model, Vandana is promoting the benefits of cancer support groups, and has facilitated the organization of similar groups across the country in the form of partnerships. Since 2007, V Care has supported almost 50,000 patients and worked with 5 hospitals. 

Vandana has also been raising awareness with the public about cancer and early symptoms through events such as “Share a Celebration” at Diwali and “Cancer Survivors’ Day”, which has been replicated by partners across the country. V Care has been advocating against tobacco use through partnership programs like the “Voice of Tobacco Victims”. In the next 5 years, Vandana plans on building a cancer patients database, conducting research and studies on the needs of cancer patients and their families, and implementing innovative outreach programs for all stakeholders.

Note: This was updated in August, 2014. Read on for the ELECTION profile.

INTRODUCTION

Learning from her personal experience as a cancer patient, Vandana Gupta has built a series of coping mechanisms to help people survive cancer in India, a society where few systems exist that offer support for cancer patients and their families.




THE NEW IDEA

Vandana Gupta, who was diagnosed with cancer and treated for it, is developing a whole new level of attitudes, perceptions, and responses that negate the stigma attached to cancer in Indian society. She is building an entire array of support mechanisms for cancer patients and their families. Her program is the first of its kind in India. It fosters hope in patients and their families, by providing information and support services to help them weave their way through the maze of treatment and social ostracism that affects all those touched by this disease.




THE PROBLEM

The response system that surrounds the average cancer patient in India today is neither positive nor empowering. It is more likely to induce feelings of disability or physical incapacity. Cancer foundations do exist in some parts of the country but are primarily focused on providing financial support for treatment and rehabilitation. Physicians are not trained how to respect and treat patients as individuals or to explain to them their disease and its treatment and prospects. The lack of adequate information is a basic problem that creates panic and fear in the mind of the patient - fear of the unknown, of the treatment, of dying. Doctors and the medical community who treat cancer patient are overwhelmingly stressed; there are more cases than they are equipped to handle, so they do not normally have time to listen to emotions. They have the "body" to treat and are unable to offer solutions to the confused and shocked mind of a patient.

The harsh impact of the disease is compounded by myths about cancer: that it is contagious, synonymous with death, or hereditary. These perceptions build public behavior responses that affect the entire life of the "victim of the dreaded disease," and his or her family also experience discrimination and stress that is not merely psychological or emotional, but also economic and social. Marriages, commonly arranged by the families, can be disrupted if the prospective bride or groom has a near relative with cancer. Vandana recognizes that it is both important and difficult for the families of cancer patients to stay together and stable during their distress.




THE STRATEGY

Through her own treatment and observation of the treatment of others, Vandana defined a series of coping mechanisms that worked for her and which she is extending to help others. For instance, there was a great difference between conversing with friends or well wishers and interacting with those who have survived the disease. Contact with these individuals can give patients the much needed moral support to fight their own battles. Consequently, one of the core elements of her support system is putting patients into contact with survivors.

Her first target was patients waiting in the hospital lobbies. Thereafter, she moved on to cancer wards, where she met, talked with, and listened to more patients, survivors, and relatives. From among them she formed an organization, V-Care, around a nucleus of volunteers. Thirty-five full timers, mostly survivors or relatives of patients and able to empathize with a cancer patient, now work with her. They collect donations, blood, money, and even medicines for patients who need them, besides arranging accommodation and transportation for those coming from far away places to the cities for treatment.

Vandana's organization has mobilized recognition and support from the major hospitals in the city of Bombay in south central India. In its first year of operation, it was invited to operate with a special unit in the vicinity of the Tata Memorial Hospital, the largest cancer hospital in the country, with over 600 beds. The volunteers now conduct support work in various other hospitals such as Breach Candy, Ratan Tata, Nanvati, and Jaslok, some of the major private hospitals in the country. Vandana has developed mechanisms to dispel myths about cancer and the cancer patients and to breed positive, encouraging thought processes that promote an open-minded approach to cancer. One such activity is the celebration of "Cancer Survivors Day," an event exclusively for cancer survivors who come from across the world to discuss their experiences with patients. The event is fast catching on among support networks and has already spread to Coimbatore in South India, North Delhi, and Chandigarh in the Northwest. She has also developed the Victor Awards that recognize and popularize the concepts of positive thinking and behavior among cancer patients. She is constantly disseminating information on types of cancer, physical responses to the disease, treatment processes, the impact of personal habits, food and nutrition, and related environmental issues. She is developing an exhaustive data bank that enables the production of pamphlets on cancers and their treatments, in all Indian languages, and is planning to compile statistics and personal records of patients for research into correlations between types of cancer, personal habits, and environmental conditions. Vandana is working with the media and communications world to spread "positive" imaging about the disease and its management, in contrast, for instance, to the most common metaphor for a social malady - "a cancer in society," never a "diabetes" or a "congenital heart condition." Similarly, if in a movie or television serial a character has to be discontinued, they are typically made to "suffer from cancer" to die. Vandana points out that diabetes and hypertension are equally as able as cancer to fatally strike a person anytime throughout life. When a patient of cancer has successfully gone through the "remission stage," he or she may resume a health status on a par with other individuals who haven't had cancer. She is also working to sensitize the media to cancer issues. She would like the media to spread the message that cancer is not an incurable disease. In fact, with the proper outlook even the physical and behavioral changes that occur during treatment can be overcome.

Vandana hopes to reach a better solution to certain problems of cancer patients. Specific interest groups and strategies are being developed to lobby for causes such as life insurance for those patients who are now denied coverage even after five full years of recovery, the end of discrimination at job placements, concessions for relatives to accompany patients for treatment, making women's check ups mandatory (for breast and cervix cancers), making school life for a child with cancer less traumatic, and banning tobacco and related products from sponsored events and advertising.




THE PERSON

Vandana as a person has always viewed life positively and believed in making use of every opportunity to learn and develop mechanisms to not only cope with the situation but to turn it into an advantage. At the age of forty, she discovered that she was in the third stage of lymph node cancer. Through her illness and treatment, she discovered the courage, strength, and positive attitude required to live with a debilitating disease. She realized that it was not merely the medicines and treatment, but her mental attitude that was a significant factor in her successful recovery. She was like any other cancer patient, shocked and shattered, and he saw her family equally desolate with uncertainty, fear, and a loss of security. Ultimately, her positive attitude took over her traumatized mind and sent her on the road to recovery. From then on she has been committed to spreading her techniques that are simple to transmit and very nurturing to all cancer patients all over the country.




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