KATHMANDU, Nepal — In November 2016, India’s Ministry of Health and Family Welfare announced an ambitious cancer screening framework — the country’s first. The program outlined mandatory screening for everyone over age 30 for oral, breast, and cervical cancers. Initially set to run in 100 districts, the program would eventually expand countrywide.
While the framework appears promising, more than a year on it is unclear whether any progress has been made. In a country lacking sufficient numbers of gynecologists, women’s health NGOs have stepped in to carry out screenings. And many are wondering why the government hasn’t made the most obvious answer to the deeply preventable cervical cancer — the HPV vaccine.
Every year, more than 70,000 women in India die from cervical cancer, more than anywhere else in the world.
After breast cancer, cervical cancer caused by HPV is the second most common cancer in women worldwide, causing 250,000 deaths each year; India accounts for 27 percent of this mortality.
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Despite India’s high burden of disease, it hasn’t introduced the HPV vaccine in its immunisation program, although it is available in the private sector, and has inadequate screening for the disease — two highly effective interventions that, when working together, could catch the disease at a precancerous stage and prevent 70 percent of new cases.
In a country with a burgeoning youth population that is sexually experimenting at a younger age, experts and NGO workers fear women and young girls are being left behind — that resources for cervical cancer are woefully inadequate.
In 2006, the first HPV vaccine, Gardasil, was approved for use. The vaccine, which includes others produced by different pharmaceutical companies, protects against strains of HPV which cause the greatest risk of cervical cancer. They are estimated to prevent nearly three-quarters of cervical cancer cases.
India’s reluctance to join those countries dates back almost a decade. In 2009, the nonprofit organization PATH launched a $3.6 million HPV trial of almost 25,000 girls in two states in India. Funded by the Bill & Melinda Gates Foundation, the program swiftly came under fire amid local media reports that seven girls in the program died. The trial was halted in 2010 with a government committee saying researchers had failed to obtain appropriate consent. Though Indian officials announced the deaths weren’t related to the vaccine — among the causes were drowning, snakebite, and malaria — the negative connotation stuck.
Recently, India’s National Technical Advisory Group on Immunization recommended the HPV vaccine be introduced into the country’s Universal Immunization Programme. Despite the recommendation, the Ministry of Health is reluctant to roll it out, according to local media reports.
It’s unclear the impact the HPV trial debacle had on policy-makers. But while the ministry drags its feet, many who work in the health sector argue more has to be done for women.
Biocon Foundation is one of the few NGOs in India that provide pap smears to underserved communities. In 2016, it began a screening program in Karnataka, a southern India state. Since the program’s inception, more than 3,000 women have been screened. Some women were found to have advanced lesions, while many more were found to have untreated reproductive tract infections.
“In many states screening is just nonexistent. You won’t even find gynaecologists at district level hospitals in many states.”— NB Sarojini, the director of Sama
Suchitra Bajaj, senior program manager at the foundation, told Devex that the enormous effort that had to go into running screening programs along with the lack of “instant results” meant that many NGOs were deterred from working on the issue.
“You need a lot of patience when working on something like this,” she said.
“You need to first educate and raise awareness about cervical cancer, and then you need to provide an area where you can do screening. You won’t be able to screen 6,000 women in one day. With oral cancer, you can do population-based screening house to house, but when it comes to cervical cancer, it’s difficult.”
In spite of the government’s new framework, routine screening remains rare and it has fallen on NGOs to fill the void, said NB Sarojini, the director of Sama, a Delhi-based NGO that works on women’s health.
“There’s poor quality and coverage of screening in India. In many states screening is just nonexistent. You won’t even find gynaecologists at district level hospitals in many states. We don’t have the infrastructure.”
While there are some NGOs willing to step in, work doesn’t stop after screening.
“When you talk about cervical cancer, just doing screening is not enough,” NB Sarojini said.
“What happens to the women who are positive? What about the lesions that are found? Treatment is very expensive.”
Mridu Gupta, founder of CAPED, an organisation focused on cancer prevention and awareness in north India, said the stigma surrounding cervical cancer was another deterrent for NGOs to get involved.
“There’s practically nobody working on this issue,” she said.
She explained that stigma associated with the disease due to its potential link to sexual transmission prevented women from coming forward when screening opportunities existed, presenting challenges for NGOs.
Moreover, a lack of awareness about the disease meant that few women understood the importance of screening, even among those who could afford it in the private sector, Gupta added.
“We try to explain cervical cancer can happen to anyone anywhere but nothing can remove stigma. Women who are diagnosed with cancer don’t tell anyone — I think this has to do with the fact that the woman is needed at home,” she said.
“We haven’t seen many families take women for treatment. It usually gets left.”
Looking ahead, women’s health NGOs want the vaccine’s benefits to be better understood — it can prevent thousands of deaths each year. Many, including Gupta, are tired of seeing the HPV vaccine being misrepresented as sexualizing young girls and encouraging sexual activity.
“Some have no idea what the vaccine is about. It’s the height of ignorance,” Gupta said.
“We want government policies to change. We believe the vaccine should become part of the UIP [Universal Immunization Programme]. It’s something that is going to take time. Women’s health is a challenge in India, it’s a low priority.”
Read more Devex coverage on global health.