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ASHOK KUMAR RAU

India,

Ashok Kumar Rau is making society at large responsible for people living with HIV/AIDS. His intricate program offers patient care and support while fostering in society a sense of acceptance of HIV-positive individuals.

This profile below was prepared when Ashok Kumar Rau was elected to the Ashoka Fellowship in 2002.

Fellow Sketch

As the foremost pioneer for HIV in India, Ashok Kumar Rau ignited the movement to recognize the critical needs of people living with HIV. Recognizing the deep stigma of HIV, Ashok’s intricate model seeks to systematically change the societal discrimination against children, women, and men living with HIV/AIDS.

Beginning in a chicken coop in 1992, Ashok’s Freedom Foundation offers comprehensive medical, psychological, social and legal services for the well-being of people living with HIV AIDS. As the first to introduce a psychological angle to a purely clinical approach, Ashok takes a holistic perspective towards addressing HIV/AIDS. Ashok’s vision was to normalize the lives of those affected. For instance, he has worked with schools to destigmatize HIV positive children. Also, His Freedom Foundation has worked to mainstream women rejected for their AIDs, helping them achieve financial inclusion, marriage, employment and housing. By 2009, Ashok was running 48 centres across the country offering comprehensive care to those who needed it, with direct services to around 450 to 475 people on a daily basis. 

Around this time, the National AIDS Control Organisation recognized and integrated the Freedom Foundation model into its already existing prevention model. Today, the model is well entrenched across the HIV AIDS intervention spectrum, and his 360 degree approach has become the accepted way of working with and empowering affected communities. Furthermore, Ashok’s model was profiled in a WHO Global Knowledge Pack and recognized by the UNAIDS as a best practice. Through this, he was able to replicate his model in Nigeria and Botswana, where local organisations learned from and propagated the Freedom Foundation model. 

Ashok is now focusing his interventions at underserved areas within the sector. He is using his expertise to address the issue of affordable diagnostics for those affected by HIV/AIDS. Specifically, experimenting with graduated cost recovery model to make HIV/AIDS treatment more accessible through the subsidization of anti-retroviral drugs and diagnostics. Besides this,  Ashok is turning his attention towards the often neglected topics of children with HIV AIDS development; and reproductive health, where he aims to create and scale interventions in these areas. 

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

INTRODUCTION

Ashok Kumar Rau is making society at large responsible for people living with HIV/AIDS. His intricate program offers patient care and support while fostering in society a sense of acceptance of HIV-positive individuals.




THE NEW IDEA

Ashok has defined a psychologically safe environment and rehabilitation process for people in India living with HIV/AIDS. He is building a broad-based support system by making communities responsible for providing care and support to patients while helping reintegrate them into society.

Ashok's Freedom Foundation is a comprehensive system of care and support, combining psychological and social aspects with clinical and medical methods. Because of his understanding of the epidemic from the development and human rights perspective, Ashok has the knowledge and expertise to make society take responsibility and accept the HIV community. By involving college students, lawyers, community volunteers, the corporate world, child educators, and members of citizen sector organizations, Ashok has placed the control of intervention into the hands of all members of society. Rather than focusing only on medical treatment and prevention, Ashok is making a progressive step toward preventing the epidemic by educating and integrating not only the HIV/AIDS population but also the rest of society.




THE PROBLEM

India has an HIV-positive population of close to four million, which amounts to nearly 1 percent of the adult population. Ninety percent of the HIV-affected individuals are in the most economically productive age group, between the ages 15 and 44. One in every four cases is a woman and HIV/AIDS has already affected India's children. By the end of 1997, it was estimated that approximately 48,000 children in India under 15 were living with HIV/AIDS that 120,000 children had lost both parents to AIDS. These figures make India second only to South Africa in the number of HIV cases.

Public awareness about the epidemic is minimal. This fact causes the HIV/AIDS population to experience a lack of jobs, rejection from family and friends, and social isolation. The social stigma against HIV deprives patients from basic rights like food, shelter, information, education, employment, legal rights, and death with dignity. Medical intervention is inadequate, and sometimes medical care providers exhibit reluctance in treating HIV/AIDS clients.

Patients are left to cope with the emotional, psychological, social, medical, and legal issues on their own.

The focus of most work in the sector, including the government's, is on prevention. This means that for many of those afflicted with HIV there is no support or comprehensive approach to care.




THE STRATEGY

Ashok recognizes that society's reaction to HIV needs to be addressed in a way that provides comprehensive medical, psychological, social, and legal care.

Ashok is defining an affordable, comprehensive support and care system for people living with HIV/AIDS. The support and care provided by Ashok's Freedom Foundation makes cross sections of society take responsibility and improve the acceptance of the HIV community. For example, Ashok has already convinced the medical fraternity to provide its services at minimal fees for patients who otherwise could not afford the necessary treatment.

Sensitizing school and college students to accept individuals with HIV and educating them on the facts, Freedom Foundation breaks down myths and misconceptions associated with people living with HIV/AIDS. Ashok also provides opportunities for these young people to volunteer for the foundation, providing them with first-hand experience within the HIV community.

To provide the necessary legal support to people living with HIV/AIDS, Freedom Foundation networks with the lawyers collective in Mumbai and the National Law School in Bangalore. The foundation has campaigned to guarantee women's property rights and nondiscriminatory education, provided adequate public health services, and implemented measures that will reduce the socioeconomic dependency of women. Freedom Foundation has also been successful fighting legal battles to ensure the employment of HIV in the police force. The foundation believes that the law should involve itself in changing the patterns of societal behavior that make particular groups vulnerable to HIV/AIDS affliction and discrimination.

Ashok's work involves many programs to help sensitize the social sector, government organizations, medical schools, and homes for the blind. Students and volunteers spend time in the community, corporate employees contribute to the "Give while you earn" program by designing and maintaining the foundation's Web site and by developing learning projects for children with HIV. Ashok also ensures the involvement of pharmacies and medical laboratories, blood banks and medical practitioners by acquiring subsidized services from them. He trains medical care providers urging them to take responsibility to provide healthcare to people living with HIV/AIDS.

Ashok's programs have been able to convince the Ministry of Labor/Industry and Commerce that interventions in the workplace are key to promoting economic growth and stability. Sessions are conducted for coworkers of employees living and working with HIV/AIDS about the basic facts, the emotional impact, and ways to provide reasonable accommodation to a worker with HIV, including techniques on how to avoid disruption in the workplace. The foundation has helped in developing corporate educational materials on HIV, like videos, manuals, and brochures. Promoting nondiscriminatory employment practices and providing legal support to employees living with HIV have been additional key elements.

Ashok has also actively pursued the rights to education for children living with HIV/AIDS, securing admission for children at local schools. The rights of these children have become a focus of the center. Techniques of art and narrative therapy are used to promote self-expression and to build self-esteem. The center aims to provide emotional security by having social workers and volunteers provide the children with warmth, love, and a sense of belonging. To tap the fullest potential, a children's Learning Project has been started in the center, providing access to computers with which the children can play, learn new things, and take part in national and international discussions on HIV/AIDS.

Freedom Foundation has utilized the media by publishing various articles on the organization and the ways in which its work has demystified misconceptions around the epidemic. Ashok has authored columns for English dailies on health and HIV/AIDS and has published reports on studies he has conducted.

Ashok has also involved the Freedom Foundation in advocacy, policymaking, and program implementation at local, state, and national levels. As a member of the National AIDS Committee (NACO), appointed by India's president, Ashok along with other organization leaders successfully integrated representatives from the Indian Network of Positive People into the NACO. As a member of the Technical Resource Group on Legal and Ethical Issues, Ashok has a say in policy matters. He has drafted a National Strategic Framework for children infected and affected by HIV/AIDS.

Being an executive member of the Karnataka State AIDS Prevention Society, Ashok is in a strong position to advocate for the right of individuals with HIV. He is also a consultant for many organizations working with HIV/AIDS issues and both the central and state governments have even accepted and replicated his community-based models.

In an effort to both collaborate with AIDS-specific citizen sector organizations and integrate HIV/AIDS care into existing networks, Freedom Foundation provides training sessions at its center to help other organizations develop their models for combining care and support. This integration of skills, infrastructure, and resources enhances health and development networking across communities and organizations for more effective transfer and entry into all sectors.

Ashok's model also offers low-cost HIV/AIDS care. The center offers medical care to patients and provides them all with antiretroviral (ARV) drugs. To reach out to all patients, ARV is offered at a discounted rate for those who cannot afford it. The National AIDS Committee has encouraged replication of the program throughout the country. Notably the idea has spread, evidenced by similar centers opening in Hyderabad, Andhra Pradesh and at Bellary in Karnataka. A center is being set up in Mangalore in collaboration with the local division of the Young Men's Christian Association. A 50-bed support and care center is slated for Udupi in coastal Karnataka.




THE PERSON

In 1989 Ashok started working at a rehabilitation center for substance abuse. He was appalled with the center's approach of treating people like violent criminals, instead of like patients. A combination of his futile efforts to change the system at the rehabilitation center and being witness to his father's death from alcoholism sparked Ashok's idea for the Freedom Foundation.

Ashok, his wife Kala, and Karla Sequeira, who has been part of the Freedom Foundation since its inception, originally started the foundation for chemical dependents, and later extended its reach to the HIV/AIDS population. In the early years, Ashok and Karla acted as the resident managers, counselors, cooks, businessmen, and companions to the people they cared for. With a bachelor's degree in psychology, Ashok is a Certified Chemical Dependency Counselor/Therapist from Sobriety America International California, Janas of Santa Cruz, and the University of California. After enlisting support from his friends in the United States, Ashok saw the rehabilitation center's success rates begin to rise. With the increased success, the center began to acquire clients from across the country as well as from Bangladesh, Sri Lanka, and Nepal. To date, the Freedom Foundation demonstrates a success rate of 48 percent, the highest in the country.

Later in his life, Ashok was deeply affected when he lost a close friend to an AIDS-related illness. Ashok recognized the close link between the treatment of chemical dependants and HIV/AIDS patients. Having personally witnessed the devastating effects that HIV/AIDS can have on the infected and their families, Ashok obtained certification as an HIV/AIDS counselor from the Christian Medical College. Ashok then committed to transforming the Freedom Foundation into both a center for chemical dependants and a care center for people living with HIV/AIDS. In 1996 the support and care center was launched. Today, it is considered a model by the National AIDS Committee. Most recently, Ashok was honored by the first Commonwealth Award for the year 2001 for comprehensive care in HIV/AIDS.




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