Celebrating a Decade of Dedication to Cervical Cancer Elimination in India

In February, the cancer outreach organization CAPED (Cancer Awareness, Prevention and Early Detection) India was called to the stage at the Cancer Care Awards ceremony in New Delhi to receive the prestigious Silver Award for their project “Cancer Prevention at Primary Health Level.” The team was celebrated for having reached 268 villages, trained 213 community health workers (known as ASHA – for Accredited Social Health Activists) and 61 staff nurses, and provided cancer screening for 14,453 women over two and a half years in Gurugram, Haryana in India.

In just ten years, CAPED India has become more than they ever imagined.  Their founding day, May 21, is now a Cervical Cancer Prevention Day across the country. They have reached more than 55 million with awareness outreach on cervical cancer. And this month they joined with other partners in the Global HPV Consortium and multi-sectoral organizations to form Cervical Cancer Elimination Consortium -India (CCEC-I), an in-country coalition that will support the upcoming effort to roll out HPV vaccinations and cervical cancer screening and treatment across India.

Started by five individuals who all lost a loved one to cancer, CAPED India came together in 2014 with the idea of raising cancer awareness. The founders focused on cervical cancer, as it is the second most common cause of cancer mortality in Indian women and a woman loses her life to cervical cancer in India every eight minutes.

“It was the most unknown and undiscussed cancer in the country,” says Mathangi Ramakrishnan, head of communications and program strategy. “The first steps of the organization were simply to raise awareness, and the first organizers went out into the city to talk to women.”

Within a year, she says, CAPED’s founders realized just talking about cancer was not enough. They began partnering with obstetric/gynecologic clinics and acquired a van to do mobile testing, holding community-based “camps” where women could receive information and screening.

CAPED soon added patient navigation to their services. “We go door-to-door and accompany women to the health facility,” she says. If a woman screens positive,  “we literally take them to the hospitals and support them throughout the diagnosis and treatment process.”

These days CAPED has 25 core team members who “work on everything…communications, programs, implementations. We are a very lean team and try to work with lots of partner organizations.” In addition to educating and screening communities, the team also provides cervical cancer training to health professionals.

Although the organization struggled to get attention at first, that has changed. The first turning point, says Mathangi, was during the pandemic. “There were a lot of reasons why our efforts weren’t a top media priority, but mostly there was not enough focus on preventive health.”  As COVID-19 began, “the focus in the press and in the public turned to taking care of ourselves and preventive health. There was more interest in our activities.”

Then, in 2020, the World Health Organization announced its global strategy for elimination of cervical cancer. “It was the game changer,” she says. “The strategy brought into focus the cervical cancer elimination cause and the work that needed to be done in country to get anywhere close to the 90-70-90 target.”  As a result, CAPED’s work received more attention. As one of the few organizations in India focused almost entirely on cervical cancer, CAPED was asked to contribute to various forums and platforms.

Their expertise includes some of the hard lessons learned in the early years of their outreach.

“We learned to hire in the community we’re working in, so our team members can speak the language and understand any reluctance to talk about cervical cancer,” says Mathangi. “We also developed capacity -building materials for health workers in the area on how to talk to patients about cervical cancer.”

When they began, CAPED tended to use physicians to address the community. and “we found when they talked in medical or technical terms, it became a scary thing.” Now, she says, “We tell personal stories, which are more relatable for people. Our CEO talks about her experience with her mother’s struggle with lung cancer. We use personal anecdotes.” CAPED staff go through a rigorous two-month training program, learning to “really attach that personal connection to the cause and be able to communicate about cervical cancer without scaring people.”

Another lesson: keep the information sharp and to the point. “We used to come in with pages and pages of information, but women we are trying to reach end up not actually using it,” says Mathangi.

Today, CAPED brings cervical cancer awareness workshops to dozens of corporations, universities, schools and other institutions throughout India, and continues to expand the “camps” that bring cervical cancer screening to villages and townships.

The ultimate goal, say those at CAPED, is to scale their program across India and make India cervical cancer-free – “Cervical Cancer Mukt Bharat” (“mukt” stands for “free”). The project that won the Cancer Care Award is now a collaborative model for Civil Society Organizations (CSOs) to partner with the government at District/State levels to strengthen the primary healthcare system for cancer prevention and screening. In the second phase of the project, “We have begun implementing this model in two new districts in two other states to test replicability,” says Mathangi. The project has also resulted in creation of an implementation guide, which will be a blueprint for CSOs anywhere across India to replicate the approach for cervical cancer elimination. As the new HPV vaccination campaign gets underway, the  hope is CAPED’s experience facilitates success.

“The journey of the past 10 years has been one of dedication and determination. With each passing year, our resolve to create a Cervical Cancer Mukt Bharat grows stronger. Through awareness, prevention and early detection, and research and advocacy, we pave the path towards a nation free from the burden of cervical cancer”, says Mridu Gupta, CEO, CAPED.