From cancer survival to policy change: Advocates demand a voice
In traditional Indian folk medicine, the practice of consuming gomutra (cow urine) is widely promoted as a miraculous remedy for severe illnesses, including advanced cancers. Proponents of traditional practices frequently market these remedies to patients seeking hope outside modern oncology, despite a complete lack of scientific evidence supporting their efficacy.
For Rasika Bombatkar, a patient advocate and lead researcher at the Lung Connect India Foundation, the mention of drinking cow urine isn't a hypothetical concept; it is advice she was urged to follow after her own cancer diagnosis.
Speaking at the World Cancer Congress in Hong Kong, Bombatkar highlighted this folk remedy to illustrate a glaring gap in international healthcare policy: standard global medical guidelines completely overlook the cultural realities and unverified alternatives patients encounter on the ground.
"Does any of you think that drinking cow urine would help cure cancer?" Bombatkar asked the audience during the session. "That is what I was told to drink because that is a traditional medicine in India that is supposed to cure cancer... Will any of the cancer care guidelines have this written somewhere? No. You will only know about that if you talk to a patient."
Bombatkar’s journey into advocacy began at the age of 26, when she was diagnosed with lung cancer. As a young non-smoker, her symptoms were repeatedly dismissed by healthcare providers who assumed lung cancer was strictly an illness affecting older, lifelong smokers.
Doctors initially pushed her toward treatments for tuberculosis and pneumonia, and it was only after Bombatkar aggressively advocated for herself and demanded a CT scan that the tumor was finally uncovered.
Her story exposes deep problems with how cancer is handled in low- and middle-income regions. Because screening for lung cancer relies heavily on age and smoking history, young non-smokers are often left out.
High diagnostic costs prevent patients from getting the targeted treatments they need. On top of that, social stigma and misleading advice leave people stranded with unproven remedies when they need modern medicine most.
That is why she advocates including people with cancer in important conversations. Today, through her work with the Lung Connect India Foundation, Bombatkar amplifies the collective experiences of thousands of patients who have faced similar diagnostic delays and financial burdens.
"If it is about us, it has to be with us," Bombatkar emphasized, urging international health organizations and policymakers to integrate patient perspectives into global health strategies on cancer.
Shifting from inspiration to decision-making
Patient advocate Kara Magsanoc-Alikpala shares a similar conviction: people with lived experience must have a direct voice in shaping policy. Her journey began in the late 1990s, when an initial misdiagnosis nearly cost her life. She was saved only because her father, a surgeon, insisted on a biopsy that confirmed breast cancer.
Today, as the founder of the ICanServe Foundation, Magsanoc-Alikpala is challenging the global oncology community to shift its mindset. Her message to leaders and conference organizers is unequivocal: stop inviting survivors solely to share emotional stories and start including them in the room where decisions are made.
Personal anecdotes may inspire, but only policy reform can dismantle systemic disparities in care.
"Yes, we will tell our stories, but we will always have to pivot to something higher and bigger because we can do more than that," she emphasized during one of the sessions at the Hong Kong conference.
From survival to legislative reform
Magsanoc-Alikpala’s shift from personal survival to policy reform reached a historical peak when she co-led the Cancer Coalition Philippines in lobbying for systemic change.
For over 15 years, more than 50 cancer-related bills had languished in the Philippine legislature, largely because they were authored by politicians operating in isolation.
By centering patients, families, and caregivers, whom she calls "persons with lived experience," the advocacy coalition successfully pushed for the passage of landmark legislation: the National Integrated Cancer Control Act (NICCA).
Their strategy married sharp legislative maneuvering with an undeniable grassroots presence.
By mobilizing their network, the coalition secured dedicated seats on a newly established National Cancer Council, reserving specific spots for a cancer survivor and three non-governmental organizations. To guarantee that council decisions carried real weight, they mandated that government representatives hold a rank no lower than undersecretary.
Meanwhile, they staged a silent show of force inside parliament, routinely packing the gallery with more than 150 patients and caregivers during hearings, creating a sea of faces that made it politically impossible for lawmakers to bump their agenda items off the calendar.
Yet even with a historic law on the books, Magsanoc-Alikpala knew the fight for patient authority had only just begun.
When stakeholders gathered to draft the law’s Implementing Rules and Regulations, she noticed a glaring omission: not a single patient was listed on the official roster, which was composed entirely of physicians and bureaucrats. Undeterred, she walked into the room uninvited.
During a heated debate over board representation, a physician turned to her and openly questioned why a patient belonged on an advisory council at all, dismissively asserting, "These people don't know anything."
For Magsanoc-Alikpala, that moment laid bare healthcare’s unwritten hierarchy, an invisible caste system in which chief physicians, attendings, and fellows reign at the top, while the patient lying in the hospital bed remains trapped at the bottom, systematically shut out of decisions about their own care.
"We always have to reassert ourselves. We always have to show up and keep proving ourselves," Magsanoc-Alikpala reflected.
With cancer affecting nearly 92% of people worldwide directly or as caregivers, Magsanoc-Alikpala insists that modern healthcare can no longer treat patients as passive subjects or mere sources of inspiration.
True progress requires recognizing patients and carers as indispensable partners in designing health policies, clinical trials and systemic reform. Surviving cancer, she proved, was only the first step; reshaping the system so future patients don't have to fight it alone is the ultimate mission.
The Asian code against cancer
The concerns raised by Bombatkar and Magsanoc-Alikpala address several regional challenges in cancer diagnosis and care across Asia’s diverse cultural, traditional and policy environments.
Parallel to their calls for patient representation, the push for an Asian Code Against Cancer was highlighted in a separate session during the Hong Kong conference.
Asian health officials and cancer advocates are nearing completion of the code, an evidence-based public health framework tailored to the region’s unique dietary, cultural and metabolic profiles.
Spearheaded by the Asian National Cancer Centers Alliance (ANCCA) and supported by the World Health Organization (WHO), the initiative aims to bridge critical healthcare gaps across a region that accounts for 60% of the world’s population and one-third of global cancer deaths, yet largely lacks standalone prevention codes.
"We already have codes in Europe and Latin America — why not one more for Asia?" said Dr. Eric Domingo of the WHO Western Pacific Regional Office, highlighting that crucial preliminary milestones have been met.
Legal experts add that a unified framework will establish a legal foundation for cross-border cooperation, helping member states standardize early detection, share data and improve post-treatment survivorship care regardless of domestic economic capacity.
"We need a culturally and contextually adapted code that makes it easier to establish a legal basis to integrate at the domestic level," said Ma-Anne Rosales Sto. Domingo of the McCabe Center for Law and Cancer. "We need a unifying code to promote regional cooperation — a regional framework where, despite varying capacities, no country gets left behind."
Health leaders emphasize that the code is also a vital financial investment.
Dr. Andrew Yuen of the Hong Kong Cancer Fund urged regional leaders to prioritize funding for the framework, noting that shifting focus toward culturally adapted prevention will dramatically reduce cancer incidence and alleviate financial toxicity for millions of families across Asia.
