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“I’m sure he would have survived if he would have had the medicine sooner.”

Those were the painful words of Suman, a young resident of a poor neighborhood in northern Delhi, referring to her husband’s death from HIV/AIDS. Her statement resonates with the ineffectiveness of the local government to provide in a timely manner her husband with health services to which he was entitled.

Suman is one of approximately 2.2 million Indians living with HIV/AIDS. Now she is working with other AIDS activists to ensure that others do not suffer the same fate as her husband. Together, they are using World Vision’s Citizen Voice and Action (CVA) approach to improve the health services that keep them alive.

At a recent meeting of activists in northern Delhi, Suman sat at a small table and told her story.

In the year 2000, she and her husband Rajinder were diagnosed with HIV. With two children depending on them, Suman and Rajinder were devastated. But they began to take every measure possible to extend their lives, and signed up for a government programme that provided Anti-Retroviral treatments (ART) – ARTs can greatly extend the life of those living with HIV and AIDS.

Things were going fairly well until Rajinder was hit by an allergic reaction to the treatment. His skin broke out in a horrible rash and he was forced to discontinue the treatment. The doctors were able to cure the rash, but in the absence of ARTs, the HIV in his body became much more lethal. Rajinder’s doctor recommended him for 2nd line ARTs. These drugs are stronger and are reserved for those with worsening cases of AIDS. Rajinder immediately applied to receive the drugs to which he was entitled under Indian law. But because of government bureaucracy, the 2nd line ART drugs were not available to him for another 6 months.

By that time, Rajinder was dead.

It is in this context of systemic failure that World Vision’s CVA approach works. CVA is a community-led advocacy methodology that empowers citizens to hold their governments accountable and improve the services on which they depend. Using the CVA tools, communities learn about local law and the services to which they are entitled. Next, together with government, they visit clinics, schools, and other government facilities to compare these commitments with reality. Finally, working collaboratively with local governments, communities create an action plan to improve services. Since 2005, World Vision has equipped hundreds of communities around the world with the CVA tools.

Suman, an AIDS activist from Northern Delhi.

In 2010, Suman and other HIV-positive activists in northern Delhi participated in a CVA training. By leveraging India’s Right to Information law, they extensively researched the precise nature of the services to which they were entitled. When they measured those entitlements against reality, they found gaping holes. Working with the Delhi State AIDS Control Society (or DSACS, the government agency responsible for combating HIV and AIDS), the activists created an action plan. DSACS acted quickly on their behalf, and issued a series of memoranda to health centres around Delhi.

As a result of the CVA exercise, the community of HIV positive people in northern Delhi has seen improvements in the services on which their lives depend. For example, after the exercise, clinics were equipped with scales so that they could monitor the critical weight changes in HIV patients.

Some ART centres also greatly improved their measures to protect the confidentiality of patients. Prior to the exercise, doctors and nurses would counsel HIV positive individuals behind a thin curtain. But after the CVA exercise, consultations were moved to private rooms.

Likewise, Suman and her fellow activists were able to lower the costs of treatment. Prior to the exercise, Suman and others were forced to purchase their own test tubes for the frequent blood work that they must acquire. But Indian law guarantees that test tubes will be provided by clinics. After stepping up against the malfunctioning of the service, clinics began to provide these essential materials.

Ultimately, of course, it is the activists’ children who benefit from better health services. After Rajinder’s death, Suman was left to care for their 13-year-old son named Shushil and an 8-year-old daughter named Bhumika. Shushil escaped infection, but little Bhumika has tested positive for HIV.

Every day, Bhumika takes her ART pills, once with her morning tea, and once at night before going to bed. Bhumika knows the schedule very well and reminds her mother if she forgets. Suman refers to the pills as HIV medicine. But Bhumika, not able to say HIV calls them her ‘A Chai’ medicine. Chai, in Hindi, means ‘tea.’

When asked how her work will help Bhumika, Suman said, “The improved services at the ART clinics will mean a lot to her.”

Suman said that it is just important that Bhumika benefits from an atmosphere free from stigma and discrimination. The group’s CVA work has also helped generate this environment.

Fighting stigma and discrimination has not been easy. Deepak, a member of the activist group, said, “Prior to the exercise, doctors and nurses treated us differently. They charged us more, provided us with poorer service, and treated us extremely rudely.”

Kumar, another activist, added, “When we used to fill out forms, they used to have a separate pen that was only for HIV positive patients. I wanted to tell these people, ‘I am a human being, just like you.’”

Bhumika felt this discrimination firsthand. Once, before the CVA exercise, Suman took Bhumika to be treated for an aggravated case of diarrhea. When the attending nurse realized that Bhumika was HIV positive, her attitude changed and she became very unpleasant. Unlike other patients who were given beds, Bhumika was sent by the nurse to sleep on the concrete floor in a corner with only a sheet.

Fortunately now, following the CVA exercise, the activists said that clinic staff members have changed their attitudes. DSACS has educated clinic employees on the nature of HIV, raised awareness to counter the stigmatizing myths that surround HIV, and given orders to clinics to change some of the most egregious procedures.

After advocating for better conditions at clinics, Suman and her friends have set their goals even higher. Working in coalition with other activist groups across India, they are fighting for quicker, easier access to 2nd-line ARTs – the same drugs that could have saved Suman’s husband Rajinder.

Fueled by her passion for justice, Suman focuses on things that can be done in order to improve the lives of Indians infected with HIV and AIDS. Her determination seems to be spreading along.

Hopeful, she said her daughter wants to be a doctor and activist, “Bhumika knows that her father died because he couldn’t take his medicine. That makes her passionate about good health. And I’m teaching her about our work [through CVA]. If all our rights our not fulfilled, I will pass the struggle on to her, so she may continue it.”

CVA effectively enabled victims of HIV/AIDS to fight for their rights. Just like Suman, other people across the globe have utilized CVA as a tool to bring about sustainable changes in their communities. Whether the struggle is in education, health or any other area, citizens can actively advocate for their rights and build a brighter future for their communities.