The family instantly moved to Mumbai’s Jaslok hospital, where doctors said Ramani needed a bone marrow transplant. His brother, sister and daughter were tested as potential donors but they failed to match. Not wanting to depend on India’s limited databases, the family mounted a global search for an unrelated donor. “We searched in Singapore, Australia and the UK,” said Alpa, Ramani’s wife.
By the time a donor was found, Ramani had undergone five chemotherapy cycles, each costing Rs 5-7 lakh. In June 2009, Ramani and Alpa travelled to Royal Free Hospital in London, where he underwent full body radiation, followed by a transplant.
The vast majority of cancer patients face agonising waitlists at government hospitals in India, but a small but growing elite is heading to America and Europe for treatment at hospitals like MD Anderson, Johns Hopkins, Sloan Kettering, Mayo Clinic, among others. The care is personalised and chances of post-transplant infections are less, but the treatment is exorbitantly priced.
Four months at the hospital in London cost the Ramani family 120,000 UK pounds – over one crore rupees. Six months before his diagnosis, he had changed his job. While the previous job comprehensively insured him, the paperwork for health insurance at the new workplace had not yet been completed. No longer able to afford living in London, in November, the family came back to India for post-transplant care. Four months later, he succumbed to the illness.
“Whatever we had saved in the last 12-14 years as two working professionals was all over,” Alpa said. “However, I would do it all over again if Ramani could have been saved.”
Private hospitals
Between government hospitals in India and elite facilities abroad, there is a third alternative for cancer patients: private hospitals. Some are part of countrywide chains like Fortis and Apollo, others are speciality hospitals like the relatively new Artemis Hospital in Gurgaon.
Artemis has an 8-bedded ward for bone marrow transplants. About 80 transplants have been performed here in the last two years. Dr Hari Goyal, head of medical oncology at the hospital, claimed their success rate was at par with the international transplant centres in the West.
While patients find private hospitals "clean and hassle free", many complained of cost escalation that eventually became difficult to handle.
A 22-year-old male call centre employee diagnosed with non Hodgkin’s lymphoma in 2012 was initially treated at B.L. Kapoor Hospital in West Delhi. Each chemotherapy cycle cost the family close to Rs 40,000. When the cancer relapsed, the expenses shot up considerably and family resources soon dried up. “In the end, we had no money left to even pay for his medicines. All my jewellery had to be sold off, our business completely collapsed. That is when we came to AIIMS,” said Ankit’s mother, tears welling up in her eyes.
Another patient, the wife of a businessman from Lucknow, was treated at Apollo hospitals in Delhi for leukemia. After spending over Rs one crore, the family was told that the case had become “too complicated”. The patient was then brought to Tata Memorial Hospital's centre in Navi Mumbai, where she passed away in 2013.
Senior Consultants at Artemis, Dr Sushant Mittal and Dr Sammit Purohit, maintained that the basic expenditure was the same in both government and private hospitals. “It is the costs for the supportive care that make a difference. Post transplant, platelets, different antibiotics and consumables are needed which the government may provide from inside.”
Dr Rahul Bhargava, who is a hemat-oncologist, or a specialist in cancers of the blood, defended private hospitals, saying they provided more specialised and personalised care.
Leading cancer specialist Dr Suresh Advani, who was the first doctor in India to perform a bone marrow transplant in 1981 while working at Tata Memorial hospital in Mumbai, disagreed with Bhargava. 67-year-old Advani, now with Jaslok hospital, said: “The results are equally good in government and private hospitals."
Nevertheless, the veteran believes more private centres need to come up in the country to tackle the patient rush. “The government has an inclination to help but funds are limited and there are so many health priorities in our country. More private centres can help reduce burden. But a balance between costs needs to be maintained,” he said.
Alternative therapy
For patients who are either too poor to afford the treatment at private hospitals, or those who have exhausted all options in modern medicine, the last resort is alternative treatment. Ask any cancer patient in India how many alternative treatments have been suggested to them by friends, family, acquaintances and relatives and common names will come flying by – ayurveda, carrot juice, naturopathy, reiki.
The latest in the list is curcumin, a medicinal compound found in turmeric.
Dr Bharat Agrawal from MD Anderson institute in Texas, who has pioneered the research on benefits of curcumin for cancer patients, said promising effects have been observed in patients with various pro-inflammatory diseases including cancer, cardiovascular diseases and arthritis.
“Dose-escalating studies have indicated the safety and benefits of curcumin at doses as high as 12 grams a day over 3 months," he said in an email response. Dr Agarwal, however, admitted that well-controlled clinical trials with larger number of patients are required to confirm its efficacy and to evaluate "the long-term toxicity associated with curcumin before it can be approved for human use."
The search for alternative treatment is also taking patients all the way to McLeodganj town in Himachal Pradesh. At 3 am in the dark, people start queuing up outside the Ashoka Tibetan Clinic, located in a serpentine lane. Seven hours later, at about 10 am, tokens are distributed – for an appointment to be held two days later.
Drawing hundreds of patients to the clinic everyday is Dr Yeshi Dhonden, a 92-year-old monk who served as the personal physician to the Dalai Lama before retiring and beginning his private practice. After studying the patient’s first urine of the day and his or her pulse, Dr Yeshi prescribes tiny brown tablets, claimed to be made from locally-grown herbs. Instructions are simple: chew the tablets with water and maintain a half-hour gap between any other food or medicine to be consumed. Patients are asked to stick to a long list of dietary restrictions that include prohibition of meat, smoke, sugar, caffeine and soft drinks.
Rahul Gautam, a 34-year old businessman, began to take the tablets three years ago. Diagnosed with chronic myeloid leukemia, he took six months of oral chemotherapy before he was recommended a bone marrow transplant. Since he could not afford the transplant, he continued chemotherapy, but also started taking Dr Yeshi’s herbal medicines. He believes they helped reduce chemotherapy's side-effects. "I feel energetic, am able to work,” he said.
Modern Oncologists are skeptical of the claims of alternative medicine. “I am not saying it will or will not help," said Dr Suresh Advani. "But it does not follow an evidence-based methodology."
Dr Dekyi Tsomo, who works with the Tibetan Government-run Men-tsee-Khang hospital, agrees that documentation is an issue but feels it is “unfair” to negate alternative treatment altogether. “Our medicine is also a science which we spend years learning. It is based on traditional books and research of our ancestors,” she said.
She also emphasised that alternative treatment has started modifying itself to integrate with modern treatment. “We know we do not have sophisticated diagnostics like them. So, we often rely on their investigations – Complete Blood Count reports, PET and CT scans, X-rays, etc, to study the exact disease. Then accordingly, we treat them. Sometimes, we ourselves suggest the patient take both alternative and allopathic medicines,” she added.
Agreeing with the Tibetan doctor about the need for better documentation, Dr Nisha Manikantan, the head of the Oncology Department at the Ayurveda hospital run by the Art of Living Foundation in Bangalore said they were "trying to record every case so it may be of help for future reference."
The department takes in 10-15 patients every month in addition to OPD consultation for 30-35 patients. The treatment imbibed the principles of ayurveda, yoga and pranayama. According to Dr Manikantan, it was particularly effective in reducing the side effects of chemotherapy and detoxification of the body.
"Cancer patients come with different mindsets," she said. "Our idea is trauma incidence reduction. If a patient is cured in mind, that's the first step to recovery."
This is the final story in a four-part series on blood cancer care in India. The rest of the stories are here.