Govt-owned Kidwai Memorial Institute of Oncology, set up to provide free transplants, mostly refers patients to private hospitals for unaffordable treatment.
Divit Mishra's father sold the family's land, house, raised loans, and even begged to raise funds for his son's treatment at a private hospital. (Supplied)
South First uncovers the reality faced by families needing critical paediatric bone marrow transplantations at the Kidwai Memorial Institute of Oncology. While promises of accessible and affordable treatment were made, they remain unfulfilled, forcing families to grapple with financial constraints, emotional turmoil, and the excruciating pain of deciding to let their children go. This is the story of promises breaking lives.
Mubeena and her child Fathima, trudging the corridors of a grand, grey building on Bengaluru’s Dr MH Marigowda Road, form a classic vignette of unkept promises that once gave them hope of a fuller life. The hope has now become a flicker, waiting to fade away.
Visibly fatigued and weak, six-year-old Fathima walked along, clasping Mubeena’s hand. The frail girl’s tight grip reflected her firm belief that her mother would not let her go despite broken promises threatening to alter their lives.
The young mother is in deep anguish but determined to save her child, who is suffering from Thalassemia major. The mother’s determination has made them tirelessly walk the corridors of the Kidwai Memorial Institute of Oncology (KMIO).
Reality knows Mubeena is hoping against hope. The tiny fingers wrapping Mubeena’s hand may become a lingering memory, a grim, painful reminder of failing her child’s unwavering trust in the mother.
The mother won’t have excuses to comfort herself — not even the promises HD Kumaraswamy and later Dr K Sudhakar had separately made, and apparently forgotten, while laying the foundation stone and later opening the Bone Marrow Transplant (BMT) unit that promised free transplants to those who could not afford expensive private care.
Little Fathima is ignorant about the promises. She believes that her mother will protect her.
Coming from distant Bidar, Mubeena is fighting all odds. After finding a Human Leukocyte Antigens (HLA)-matching family donor, Mubeena and her husband have decided that the father would be the haploidentical donor.
The Bone Marrow Transplant block at Kidwai. (South First)
HLA are proteins, or markers, found in body cells. If two persons have the same HLA, they are a ‘match’. Parents are always haploidentical, or half-matched, for their children, and vice versa.
The family approached Kidwai, drawn by a promise that the poor would get free treatment for bone marrow — or stem cell — transplant. The promise that former chief minister Kumaraswamy made was repeated in February 2022, when the hospital was opened.
At the Kidwai Oncology Centre’s BMT outpatient department (OPD), however, the promises have disappeared into darkness, like the smoke from a blown-off candle.
The doctors referred the child to a private hospital. The mother is at her wit’s end, on the precipice of surrendering after realising that the treatment would cost at least ₹40 lakh. The amount is beyond her family’s wildest dreams — but it is a matter of life and death.
The mother and child paused in the corridor as if they had lost direction. The girl looked up to the mother who responded with a feeble smile, still and silent, in the bustling OPD.
The KMIO is a recognised exclusive tertiary cancer care centre-cum-academic and research institute. A member of UICC (Union for International Cancer Control) and recognised by the WHO, KMIO is an autonomous institute under the government. The Indian Council for Medical Research, too, has recognised the referral institute.
The then chief minister Kumaraswamy laid the foundation stone for the ₹17-crore BMT unit in January 2019.
“This unit will help the poor and needy patients, especially children. This is one of the largest projects of its kind in India. Surgeries could be done free of charge here under the Ayushman Bharat — Arogya Karnataka scheme,” he promised.
Three years later, former health minister Sudhakar inaugurated the BMT unit. He, too, repeated Kumaraswamy’s claim. “BMT is expensive, which the poor cannot afford in private hospitals. The new facility at Kidwai will ensure no one is deprived of cancer treatment,” he said.
The then director of KMIO Dr C Ramachandra had put in all efforts to ensure the best of the infrastructure at the dedicated BMT unit, with 10 specialised beds. “Instances of childhood cancers are on the rise and there are children who are waiting for the BMT. We will be taking up transplant cases soon,” he, too, claimed.
A year-and-a-half later, Mubeena and Fathima stood in the corridor, where the promises and claims had lost their meaning.
The BMT unit, the first government-run allogenic centre, is a referral hospital that has, ironically, been referring hundreds of paediatric patients to private hospitals for BMT, which only a privileged few can afford.
Bone marrow transplantation, also known as hematopoietic stem cell transplant (HSCT), is a treatment option for paediatric cases under certain circumstances.
Explaining the scenarios that require BMT, a senior doctor with a prestigious hospital in Bengaluru said it is a complex and often risky procedure. “Its suitability depends on the specific medical condition and needs of the child,” the oncologist said, requesting anonymity.
Doctors consider various circumstances to conduct paediatric BMT, particularly when chemotherapy and other treatments are ineffective or have a high risk of recurrence. BMT can also offer a potential cure for certain genetic disorders like severe combined immunodeficiency (SCID), thalassemia, sickle cell disease, and some metabolic disorders.
“It replaces defective or missing cells with healthy ones from a donor,” the doctor told South First.
Some paediatric conditions, such as aplastic anemia and Fanconi anemia involve bone marrow failure. The bone marrow does not produce enough blood cells in such cases, and BMT can help restore normal blood cell production.
Also, in cases with autoimmune diseases — the immune system attacks the body’s cells — BMT can reset the immune system using donor cells and in some instances, it might be used in conjunction with high-dose chemotherapy to treat certain types of solid tumors, like neuroblastoma.
Onco haematologists explained that there are two ways to perform the BMT.
The first one is where the patient receives healthy stem cells either from their own body (autologous transplant) or from a donor (allogenic transplant).
While autologous transplants are less risky and not costly, allogenic transplants are highly expensive and involve huge risks.
Kidwai was recognised as the state’s first government-run allogenic transplant centre.
South First approached Kidwai with a request for BMT for a six-year-old Fathima from Bidar with T Cell-Acute Lymphoblastic Leukemia relapse. The staff took the details and directed this correspondent to the PG doctors, saying that they would inform if BMT could be done at the centre.
“We are not doing BMT for all cases. Only autologous cases (the cheaper, less risky ones) are being taken up now. There is a lot of demand for allogenic transplants but we have not started it yet,” the staff (name and designation withheld) told South First, while directing this correspondent to the OPD located in the Infosys Foundation building.
At the OPD, this correspondent was directed to Room No 1. The PG doctors said the patient has to be referred to a private hospital since Kidawai’s BMT unit is not treating “such cases”.
When we checked, it was learnt that several other patients, too, had been referred to private hospitals for further treatment.
Saida (name changed on request) was one of them.
Her son Ayyan (name changed on request) was diagnosed, aged nine, with T-cell acute lymphoblastic leukemia at the HCG Cancer Care Centre in 2019 — well before Kidwai’s BMT unit came into existence.
Medical certificate.
The centre asked for ₹45 lakh for the treatment of this aggressive malignant neoplasm of the bone marrow.
“We could not afford so much. We heard that the Christian Medical College (CMC) in Vellore could provide him with treatment. We somehow managed to raise ₹18 lakh and stayed in Vellore for eight months during the lockdown period to provide him the treatment,” she said.
His condition improved, and the family returned happily, oblivious that their joy would last just one year. A relapse sent them again to Vellore, where the hospital reportedly recommended intense chemotherapy followed by a BMT.
Saida said the CMC quoted ₹35 lakh, which was much beyond the family’s means. They took Ayyan to St John’s Hospital in Bengaluru, which reportedly sought ₹11 lakh for chemo and ₹25 lakh for BMT.
They did the chemo for a few months but Ayyan developed a port infection leaving them with only one option — the BMT. And the Kidwai’s BMT unit, which was by now operational.
“With high hopes, we took Ayyan to Kidwai. The response was shocking. They referred us to the Narayana Health Hospital, saying Kidwai doesn’t offer BMT as it was risky. We were baffled. If the unit was created for BMT, why is it not being offered,” Saida is still confused.
Disappointed and with no option left, the couple approached Narayana. “It looked as if my son’s days were numbered and I couldn’t risk waiting. So, we approached Narayana. They quoted ₹40 lakh,” Saida said.
The world crumbled around the family. For them, the sight of Ayyan on the hospital chair with tubes attached to him was heart-wrenching. Like Fathima, he, too, looked up at his parents with hope.
The boy’s parents sought assistance from every possible non-profit and government scheme. None helped.
“We went back to the hospital with ₹10 lakh we somehow raised. We promised to pay the remaining after treatment. They refused and demanded the entire amount upfront. Only then they will admit my son,” the mother said.
Saida visited the hospital every day, requesting BMT, and returned disappointed.
The family knocked at every door possible. After 25 days, they raised enough funds for the grueling BMT procedure. Ayyan’s father became the donor, adding a financial burden of ₹1.5 lakh. They were told that the father should have mandatory reserve fund of ₹1.5 lakh in his bank account.
Even after the transplant, the family faced unexpected financial hurdles. The weekly tests demanded ₹20,000 each. No relief came from the existing healthcare schemes. The Chief Minister’s Fund, too, did not help since Ayyan’s father lacked an income certificate.
Saida claimed that she came across at least six other families at Kidwai who went through the same ordeal. Five of them decided to “leave their child’s life to fate” as they could not afford the treatment at private hospitals to which they had been referred.
The reality that even middle-class families face is hard, cruel — and cold like the promises made and ignored,
Fataheen Misbah is an IT professional. She is also associated with an NGO that supports patients. Misbah presented a grim picture of the outcome of the non-availability of the BMT procedure at Kidwai.
“Several patients approach our NGO, Pray and Lifeline Trust, seeking financial support,” she said.
“We found that though many private hospitals are providing BMT in Bengaluru, none of the government hospitals are providing the treatment,” she added.
Among government hospitals, only Kidwai has the necessary infrastructure to conduct BMT. Set up during the tenure of former director Dr Ramachandra, the unit has failed to take up all cases requiring BMT, Misbah added.
“The hospital lacks a dedicated team willing to take up all BMT cases. Currently, the hospital is taking up only low-risk autologous cases where the stem cells of the same patient are used for BMT,” she explained.
Sources told South First that Kidwai’s BMT unit lacks the extreme hygienic conditions required to take up high-risk allogeneic BMT cases that require a donor. Without proper hygiene, they become riskier due to the possibility of a high infection rate.
“The hospital sometimes takes up cancer-related cases. But why not thalassemia and immunodeficiency patients,” Misbah asked. She also wondered why Kidwai has taken up only 30-odd cases so far. Why isn’t the government probing this,” she asked.
South First’s attempts to contact the director of Kidwai went in vain.
Divit, in Sanskrit, means “heaven” or “reaching for the sky”. His parents, however, went through hell.
Baby of Mishra admitted at a private hospital. (Supplied)
Diagnosed with Thalassemia major, Divit Mishra of Uttar Pradesh was referred to the Narayana Hospital. The family soon realised that providing treatment for the child was impossible. With nowhere to go, his father Himanshu Mishra approached the Pray and Lifeline Trust.
He did everything in his capacity, even surrendered his dignity, to help the child survive. “We sold our land, and our house, raised loans, and also tried crowdfunding. My teaching job is now at stake, and I am neck-deep in debt. I begged with every acquaintance for money to meet my son’s BMT expenses,” he could not hold back his tears.
Mishra said he was first sent to the Indira Gandhi Institute of Child Health (IGICH) Hospital in Bengaluru, a government hospital. The hospital redirected him to Kidwai. saying BMT was not possible there.
Kidwai rejected the case, forcing the man to return to IGICH where doctors referred Divit to Narayana Hospital.
The treatment at Narayana will cost him ₹40 lakh. He approached several NGOs and tried government schemes for help. Mishra even knocked at the doors of the Commissioner of Department of Health, and Director of Medical Education.
Crowdfunding campaign by Himanshu.
“We were told that we are eligible for financial help only if we are permanent residents of Karnataka and belong to SC/ST communities,” he said.
Mishra explained that the IGICH sent them to the Sankalp Foundation, an NGO that helps in such cases. They even met Gagandeep of the Thalassemia India Society. With three months gone, the family couldn’t wait longer and somehow managed to get the surgery done recently.
“Divit is now in isolation at the hospital for the past month. The isolation room costs us ₹950 per day. Follow-up checks, too, will cost more and we have been told that we will need ₹4-5 lakh per month,” Mishra added.
They have started a crowdfunding campaign to raise funds for the treatment.
Healthcare comes at a premium. The condition of families waiting for BMT for one of their dear ones is distressing.
The cost ranges from ₹24 lakh to ₹48 lakh, an amount beyond the reach of many, and if managed, could destroy the financial foundation of even middle-class families. But BMT is the last straw to hang on.
For an allogeneic transplant from an unrelated donor, the cost ranges between ₹20 lakh and ₹25 lakh in government hospitals, which could go up to ₹35 lakh in private healthcare facilities. In contrast, autologous transplants cost up to ₹8 lakh in private hospitals. Post-operative care demands an additional expenditure of approximately ₹1 lakh per month or even more.
Regrettably, the financial burden of BMT treatments deters many patients from availing themselves of the necessary medical intervention. This is observed at several hospitals.
South First found that several patients avoided BMT at Ramaiah Medical College due to the exorbitant costs. At St. John’s Medical College, which handles a substantial load of 300-400 BMT requests annually, only three to five percent find suitable donors, and a mere 10-15 percent with matching donors opt for the transplant phase.
The remaining leave children to their fate. The scenario at the HCG, too, is similar.
The Prime Minister’s National Relief Fund provides approximately ₹3 lakh for autologous cases, which is a helpful contribution. Still, the expense of allogeneic transplants remains a daunting challenge for most patients.
While government schemes provide financial assistance, patients in Karnataka receive ₹3 lakh from the PM’s Relief Fund. Assistance from the Chief Minister’s Relief Fund has limitations, often requiring influential interventions for approval.
NGOs direct patients to crowdfunding platforms or private health insurance. However, these avenues, too, have restrictions.
According to patients, the disparity between Karnataka and Tamil Nadu is huge. They say BMT coverage in Tamil Nadu ranges from ₹10 to ₹15 lakh. Karnataka currently offers coverage only for SC/ST communities, with a proposed coverage of ₹21 lakh. However, its implementation is yet to commence.
Amid this situation, the Karnataka government’s seeming apathy towards its advanced BMT unit raises pressing questions about priorities and equitable access to healthcare.
When it comes to saving their child, parents seldom recall the right to live with dignity enshrined in the Indian Constitution. As Mishra said, they would even beg.
According to Kidwai statistics, the hospital annually receives an average of 100 requests for BMT. Since its inauguration in February 2022, the unit conducted only 38 procedures. Among these, a majority are autologous transplants, the cost ranging between ₹2.5 and ₹5 lakh.
Representation pic of Bone Marrow Transplant procedure being done. (Creative Commons)
“Karnataka boasts a state-of-the-art BMT unit with excellent infrastructure and dedicated medical professionals. This facility could be a beacon of hope for countless families grappling with the financial burden of BMT,” Misbah pointed out.
“However, a perplexing discrepancy exists: Why is this facility not extending its services to children in need of this lifesaving treatment? The plight of these young patients and their families should be addressed on a priority basis,” she opined.
The government’s hesitancy in offering BMT to children is baffling. ”Is it due to resource constraints, manpower shortage, or sheer apathy? It is a well-known fact that paediatric cases often require specialised care but that shouldn’t deter a fully-equipped BMT unit from catering to this vulnerable population,” she further said.
The emotional toll the dreaded disease has on families coupled with the scarcity of alternatives paints a bleak picture of the state of healthcare, Misbah added.
Saida, who is still struggling to raise money for Aayan’s post-BMT treatment pointed at a stark reality that every middle-class family faces. “None of the government schemes are available to middle-class people like us. Recently, the state government passed an order making it (BMT) free of cost for SC/ST,” she said.
“People who are below the poverty line and the wealthy can raise the money. What about middle-class families like us? Why are we being left out to suffer? Why should our children die such deaths due to the lack of adequate healthcare,” the mother needs answers.
Saida then made a poignant point. “It is a shame on any country, any government especially since we have a top-class building, infrastructure, and great doctors but won’t provide treatment that can be done there! Why then spend crores on developing such facilities? I saw so many parents crying thereafter they were refused treatment. Why is that the government is not taking note of this reality,” she asked.
Financial aid provided through various relief funds is just a band-aid solution. The challenge of securing recommendations from MLAs and the bureaucratic tangles hardly align with the urgent medical needs of the patients.
“The only small relief provided is through PM/CM relief funds subject to recommendations and further approvals, and a few NGOs which do their bit,” Misbah said.
The Karnataka government’s commitment to equality in healthcare is under question when many families are left without support despite relief measures.
Misbah welcomed the government extending monetary aid to patients from SC/ST communities requiring expensive treatment in September 2022.
“While this move is commendable, it is crucial to remember that rare diseases don’t discriminate based on caste or financial background. The limitations of this approach highlight the need for a comprehensive and inclusive healthcare policy that transcends social divisions and benefits all residents in the state,” she added.
Several patients come to Bengaluru from Assam, Bengal, and Bihar, most preferring the Narayana Hospital based on their doctors’ recommendations.
Explaining, Misbah said, the state was to provide monetary aid through the Suvarna Arogya Suraksha Trust (SAST) using unspent funds allocated to the Scheduled Caste Sub Plan and the Tribal Sub Plan. The scheme provides ₹10,000 for PET scans, ₹7 lakh, and ₹21 lakh for autologous and allogeneic BMT cases, respectively.
Two feeble figures, Mubeena and Fathima, are still waiting at Kidwai, like many helpless others, hoping that the promises made would come true before it is too late.
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