Pune: Families of Guillain-Barré Syndrome patients find recovery process too has financial toll

Pune: It's among the few health disorders where even the recovery process can extract a heavy financial toll.
In Pune, families of many Guillain-Barré Syndrome patients have found themselves on the brink, as expenses continue for physiotherapy, nutritional support and post-hospital care.
Prathamesh Darwatkar, a 25-year-old electrician from Nanded gaon, one of the worst-hit areas in the outbreak, has been bedridden since he was discharged 24 days ago. His mother, a widow, depends entirely on his income, but with him unable to work, the family's struggles have deepened.
"He is still being fed through a tube and needs support to walk or even use the toilet," his brother, Rakesh Darwatkar, told TOI.
Prathamesh's treatment cost over Rs 6 lakh with intravenous immunoglobulin therapy taking up most of it. IVIG is administered based on a person's weight.
"My brother weighs 59 kg; we paid Rs 1.8 lakh just for IVIG. Every day, the course cost us Rs 45,000, and that was the discounted rate," Rakesh said, adding that the family had to dip into their savings.
"We managed to get some financial support under the Pune Municipal Corporation's Shahari Gareeb Yojana, but that hasn't been enough. Expenses are still piling up. He needs physiotherapy every day to regain mobility and each session costs Rs 600, despite a discount we managed to get due to a personal connection, Rakesh said. He added that another physiotherapy centre was charging Rs 1,000 per day.
"We are now barely managing. But my brother's health is our top priority; we'll do everything we can for him," Rakesh said.
Over in Dhayari, another area in Pune that has reported a cluster of GBS cases, the husband of a woman who needed 17 IVIG shots said they were asked to pay for the injections up front.
The husband said: "Each of those shots was first priced at Rs 20,000 at the private hospital she was in, but later increased to Rs 26,000 per shot due to short supply. I bought them at the hospital because I couldn't find wholesale dealers quickly. We spent nearly Rs 3 lakh just on IVIG. If you include hospital stay and other costs, we spent an overall Rs 5 lakh from Jan 17 to 28, nearly 10 days."
The woman continues to have issues with her sight, specifically double vision.
"Expenses haven't stopped after discharge. We plan to visit the hospital soon to check her vision," the husband added.
A relative of another GBS patient said they had to borrow money from friends and family to fund the treatment.
"The patient only had medical insurance coverage of Rs 1.5 lakh. We had to scramble. We were able to get Rs 1 lakh under the PMC's urban poor welfare scheme, but not Rs 2 lakh, as we didn't have a ration card."
Vijay Mate, whose son was diagnosed with GBS, said it may now take him seven months to repay all the money he had to borrow for the treatment.
"We admitted him to a private hospital in the city where he was in intensive care for a month, after losing power in both hands. My son needed five shots of IVIG, each costing Rs 68,000. Overall, we are now expecting the hospital bill to be around Rs 12 lakh. We borrowed money from relatives," Mate said, adding that he asked for time to pay it all back.
Late in Jan, days after cases began to surge in Pune, the state govt had instructed officials to ensure measures are in place to cover GBS patients under public insurance policies. But there have been gaps, especially at private hospitals that are not linked to the policies.
A senior official with Mahatma Jyotirao Phule Jan Arogya Yojana, Maharashtra's flagship health insurance programme, said: "At hospitals empanelled under MJPJAY, including private units, GBS patients receive treatment free of cost. This covers everything including ICU stay, disease investigation, and medicines. We actually have three-tiered packages: Rs 60,000 for management of GBS with a 15-day stay; Rs 80,000 for plasmapheresis and other treatments; and a Rs 2 lakh package covering IVIG and other costs. The hospital covers all these costs under the scheme, and patients don't have to pay out of pocket. But this only applies to empanelled hospitals. Hospitals must voluntarily apply for the scheme, and several private hospitals are still not empanelled."
A PMC official added: "For patients admitted to private hospitals with GBS, who are members of the Urban Poor Medical Assistance Scheme, the municipal corporation has increased medical assistance to Rs 2 lakh. Additionally, non-scheme members admitted to private hospitals after Jan 14, 2025, who reside within PMC limits, are eligible for medical assistance up to Rs 1 lakh on their overall bill."