You are here

The Running Community That's Fighting to Change Health Care for Women In India

It's a sunny Sunday morning, and I'm surrounded by Indian women wearing saris, spandex, and tracheostomy tubes. All of them are eager to hold my hand as we walk, and to tell me all about their cancer journeys and running habits.

Each year, the group of cancer survivors walks together up stone stairs and dirt paths to the top of Nandi Hills, an ancient hill forest on the outskirts of their hometown, Banaglore, India, to share their cancer stories with the rest of the group. The "survivors' hike" is a tradition meant to honor the cancer survivors and their family members who make up the running community of Pinkathon—India's largest women-only racing circuit (3K, 5K, 10K, and half marathon)—as it heads into its annual race. As an American journalist interested in learning about Pinkathon, I feel lucky to be welcomed on the excursion. Pinkathon hike

But now, I'm feeling less like a reporter and more like a woman, a feminist, and someone who lost her best friend to cancer. Tears stream down my face as I listen to one woman, Priya Pai, struggle to get out her story amid sobs.

"Every month I was going to my doctor complaining of new symptoms and they were saying, 'This girl is mad,'" recalls the 35-year-old lawyer. "They thought I was exaggerating and seeking attention. The doctor told my husband to remove the Internet from our computer so that I would stop looking up and creating symptoms."

It took three-and-a-half years after first approaching her doctors with debilitating fatigue, abdominal pains, and blackened stool for doctors to finally diagnose her with colon cancer.

And once the diagnosis—marking the start of more than a dozen surgeries—came in 2013, "people said I was cursed," Pai says. "People said that my father, who hadn't supported my marriage to Pavan, had cursed me with cancer."

A Movement for Cancer Survivors In India

Disbelief, delayed diagnoses, and societal shame: They are themes I hear echoed again and again throughout my time immersed in the Pinkathon community.

Pinkathon is not just a bunch of women-only races, after all. It is also a tight-knit running community that raises cancer awareness and strives to turn women into their own best health advocates, with comprehensive training programs, social media communities, weekly meet-ups, lectures from doctors and other experts and, of course, the survivors' hike. This sense of community and unconditional support is vital to Indian women.

While, ultimately, the goal of Pinkathon is to expand women's health into a national conversation, for some women like Pai, the Pinkathon community is their first and only safe space to say the word "cancer." Yes, really.

india-run-2.jpg

India's Unspoken Cancer Epidemic

Increasing conversation about cancer in India is crucially important. By 2020, India—a country in which a large portion of the population is impoverished, uneducated, and lives in rural villages or slums without health care—will be home to a fifth of the world's cancer patients. Yet, more than half of Indian women ages 15 to 70 don't know the risk factors for breast cancer, the most prevalent form of cancer in India. That may be why half of the women diagnosed with the condition in India die. (In the United States, that figure sits at about one in six.) Experts also believe that a large portion—if not a majority—of cancer cases go undiagnosed. People die from cancer without even knowing they had it, without an opportunity to seek treatment.

"More than half of the cases I see are in stage three," says leading Indian oncologist Kodaganur S. Gopinath, founder of the Bangalore Institute of Oncology and director of Healthcare Global Enterprise, India's largest provider of cancer care. "Pain is often not the first symptom, and if there's no pain, people say, 'Why should I go to the doctor?'" He notes that routine women's cancer screening measures such as Pap smears and mammograms are anything but common. That's due to both financial constraints and a bigger cultural issue.

So why don't people, particularly women, talk about cancer? Some are embarrassed to discuss their bodies with family members or physicians. Others would prefer to die than burden or bring shame to their families. For instance, while the Pinkathon offers all of its participants free health checkups and mammograms, only 2 percent of registrants take advantage of the offer. Their culture has taught women that they only matter in their roles as mothers and wives, and that to prioritize themselves is not only selfish, it's a disgrace.

Meanwhile, many women simply don't want to know if they have cancer, as a diagnosis can ruin their daughters' prospects of marriage. Once a woman is labeled as having cancer, her entire family is tainted.

Those women who do advocate for themselves to receive a proper diagnosis—and, subsequently, treatment—face incredible obstacles. In Pai's case, getting cancer treatment meant draining her and her husband's savings. (The couple maxed out the health insurance benefits provided by both of their plans for her care, but less than 20 percent of the country has any form of health insurance, according to National Health Profile 2015.)

And when her husband approached his parents (who live with the couple, as is customary in India), they told her husband that he should save his money, cease treatment, and remarry following what would be her imminent death.

Culturally, it is thought that there are far better things to spend one's money on than a woman's health.

When the Finish Line Is Just the Beginning

In India, this stigma surrounding both women's health and cancer has been passed on for generations. That's why Pai and her husband, Pavan, have worked so hard to teach their now 6-year-old son, Pradhan, to grow up to be an ally for women. After all, Pradhan was the one who dragged Pai into the emergency ward back in 2013 after she collapsed in the hospital's parking garage. And when his parents couldn't make one of his school awards ceremonies because Pai was in surgery at the time, he stood up on stage in front of his entire school and told them that she was undergoing surgery for cancer. He was proud of his mom.Pinkathon

Less than a year later, on a warm January morning, a week after the survivors' hike, Pradhan stands at the finish line beside Pavan, with an ear-to-ear smile, cheering as his mom finishes the Bangalore Pinkathon 5K.

For the family, the moment is a significant symbol of all they have overcome together—and everything they can accomplish for others through Pinkathon.

 

Comments

Add a comment