Seven days before, when Chaudhari had first visited the hospital after moving here from her mother’s home in Mumbai, her haemoglobin was 8.2 gm/dL–much below the normal range (12-16 gm/dL) for women. This meant she had moderate anaemia–which, during pregnancy, can be very risky for her and her child.
A health assistant herself, Chaudhari did not want to take chances–she had an emergency caesarean section in 2017 when her first child was born.
Her doctor prescribed three doses of intravenous iron sucrose–a new strategy to treat iron-deficiency anaemia during pregnancy, under the Centre’s Anaemia Mukt Bharat initiative. The day we visited the hospital, Chaudhari was given her second dose at noon, and was under observation.
Like Chaudhari, more than half of all pregnant women (50.3 per cent) in India were anaemic in 2015-16. Yet, only 30.3 per cent of pregnant women took iron and folic acid tablets for more than 100 days of pregnancy, according to the National Family Health Survey, 2015-16 (NFHS-4). Hence, new strategies under the Anaemia Mukt Bharat initiatives are vital to maternal health–anaemia was the direct cause in 20 per cent of maternal deaths and the associated cause in 50 per cent of deaths in India, as IndiaSpend reported in October 2016.
Anaemia Mukt Bharat, a new game plan to fight a longstanding disease
However, as we said, only three in 10 pregnant Indian women took IFA tablets for more than 100 days of pregnancy and only a quarter of children under five took iron supplements, according to NFHS-4. Inadequate supply of IFA tablets and disparity in distribution were some of the reasons for poor uptake, studies (here and here) found.
Not just in pregnancy, anaemia is widespread in India: More than half of women in reproductive age are anaemic (53 per cent) as are 22.7 per cent of men and 58.4 per cent of children under two.
Anaemia occurs when the concentration of haemoglobin–cells that transport oxygen–in blood decreases. With oxygen not reaching all organs and tissues of the body, the person feels tired, weak and is more prone to infections.
Nearly 50 per cent of anaemia is due to iron deficiency, especially in women and children. Other causes include infections such as malaria and tuberculosis, haemoglobinopathies–blood disorders that affect red blood cells, such as thalassemia–and deficiencies of other nutrients such as B12, folate and vitamin A.
Anaemia affects the cognitive development, behaviour, and physical growth of infants, preschool and school-aged children. It weakens immunity in all age groups and impacts the ability for physical work in adolescents and adults.
The loss of gross domestic product to anaemia was estimated at $22.64 billion (Rs 1.5 lakh crore) in 2016, more than three times the health budget for 2017-18, as IndiaSpend reported in November 2017.
During pregnancy, anaemia increases the risk for maternal mortality, preterm birth and infant mortality.
Anaemia Mukt Bharat added emphasis to the failure of previous approaches, and addressed them by introducing critical monitoring to fill implementation gaps. Launched in March 2018 along with POSHAN Abhiyan, the National Nutrition Mission, Anaemia Mukt Bharat aims to reduce anaemia prevalence by three percentage points per year among children, adolescents and women of reproductive age (15-49 years) by 2022.
Is anaemia finally getting the attention it deserves?
“It is indeed,” said Purnima Menon, senior research fellow, International Food and Policy Research Institute (IFPRI). The lack of progress on tackling anaemia between 2006 and 2016 was a real wake-up call to the nutrition and health community, she said.
The strategy devised under Anaemia Mukt Bharat is called ‘6X6X6’–with a focus on six interventions, six groups of beneficiaries and six institutional mechanisms.
Six beneficiaries included in Anaemia Mukt Bharat strategy are children below five, adolescent boys and girls aged 15-19 years, pregnant and lactating women, and women in reproductive age (15-49 years).
Six institutional mechanisms include intra-ministerial coordination, anaemia control unit, Centre for Excellence and Advanced Research on Anaemia Control, convergence with other ministries, strengthening supply chain logistics and Anaemia Mukt Bharat dashboard and online portal.
The interventions include deworming, intensified year-round behaviour change communication campaign, testing and treatment of anaemia using digital methods and point-of-care treatment, mandatory provision of IFA fortified foods in government programmes and intensified awareness screening, and treatment of non-nutritional causes of anaemia–especially malaria and other haemoglobinopathies.
The most important of these is making available the IFA supplementation across the states, said Ajay Khera, deputy commissioner for Child Health and Immunisation under the Ministry of Health and Family Welfare. While earlier programmes existed for 30 years, the reduction of anaemia has been just 1 percentage point per year, because the coverage of the supplements was about 20 per cent, he said.
“This time around there is strong supply-chain mechanism to ensure that there is IFA tablet for each child, pregnant women and adolescent girl irrespective of the anaemia level,” Khera added.
The most important of the interventions is providing iron and folic acid supplementation across states, says Ajay Khera, deputy commissioner for Child Health and Immunisation at the Ministry of Health and Family Welfare.
There is also stronger monitoring with the Anaemia Mukt Bharat dashboard that displays statewise data on availability, and coverage of IFA across different groups. “Every quarter we are relaying the data back to the states so there is [a] continuous monitoring mechanism,” Khera said.
“While dashboards are good to visualise data, we don’t know enough about how the dashboards are being used, who is looking at them, and what kind of actions are being taken,” said Menon of IFPRI. The intended users of the dashboards often need support to walk through the data and understand what actions should be taken, IFPRI research shows.
In 2018, 900 camps were conducted nationwide which reached 100,000 people. In March 2019, 196,000 camps were held that reached 16.5 million people. In September 2019, during the nutrition month, T3 camps are expected to be held in government schools, colleges and institutions across India.
The Test-Treat-Talk (T3) anaemia camp is a key strategy to generate demand and mobilise people.
The success of the camps has much to do with the adoption of the digital hemoglobinometer that allows instant haemoglobin testing. Conventionally, using laboratory facilities, it took up to three days for a patient to get their results–which led to poor testing and compliance, said Kapil Yadav, Associate Professor, Community Medicine at the All India Institute of Medical Sciences (AIIMS).
Progress slow, states allot a third of required funds
Progress has been slow in IFA coverage for children and adolescents: In 2018-19, only 9.4 per cent of children below five received IFA supplementation, as did 17.9 per cent children up to nine years and 27.4 per cent adolescents.
Poor financial planning may have led to poor coverage, a UNICEF evaluation found. Most states did not plan for activities such as research, innovation, drug and warehouse logistics and human resources needed for the intensified initiative, the evaluation found.
States proposed only 36 per cent of the required budget to achieve 100 per cent coverage. While Rs 2,087 crore would have been required to reach all 407 million beneficiaries, only Rs 742 crore was proposed and Rs 574 crore was allocated.
Uttar Pradesh had a shortage of 87 per cent–highest nationwide–followed by Gujarat (65 per cent). While Jharkhand had no shortage, Maharashtra (19 per cent) and Chhattisgarh (19 per cent) had the lowest planning gap.
The researchers proposed that financing planning needs to be a part of Anaemia Mukt Bharat trainings and that states should plan for 100 per cent coverage, and coverage based on their previous records.
Getting iron directly into the bloodstream
At the Ballabhgarh hospital, every day, 50 pregnant or lactating women receive iron sucrose at the ward. Since 2014, the centre has administered more than 20,000 infusions, and provided evidence for the efficacy and safety of the intervention to fight anaemia in pregnant women.
The district hospital at Ballabhgarh is run under the Comprehensive Rural Health Services Project, a collaboration between AIIMS and the Haryana government. The Community Medicine department at AIIMS also houses the National Centre for Excellence and Advanced Research in Anaemia Control, which provides the technical inputs required for Anaemia Mukt Bharat.
Patients being administered intravenous iron sucrose at Faridabad’s Ballabgarh Government Hospital. Every day, 50 pregnant or lactating women receive iron sucrose here.
“Since we started administering iron sucrose to pregnant women with anaemia, almost all the women that come for delivery [in the centre] have normal levels of haemoglobin,” said Sunita Malik, 49, nurse-in-charge of the general ward at the hospital. “This means the women have lower risk of haemorrhage during delivery and less need for blood transfusion,” she added. Even lactating mothers are given iron sucrose if they are anaemic, as the baby will receive iron from the mother.
Gomathi Ramaswamy, research officer, and Kapil Yadav, nodal officer, of the National Centre of Excellence and Advanced Research on Anaemia Control, at the Ballabgarh Government Hospital, Faridabad.
Earlier, only tertiary care centres with specialists were thought to be able to administer intravenous iron. “But our [AIIMS] research has shown iron sucrose is safe to be given in a primary healthcare setting where deliveries occur,” said Yadav, the AIIMS associate professor, adding that in the 12 primary health centres that AIIMS runs, 5,000 infusions of iron sucrose have been given
“This is especially important given than pregnant women with severe anaemia would then require blood transfusion, which is difficult in a rural setting given paucity of blood banks,” Yadav added.
Back in the Ballabgarh Government Hospital, Chaudhari’s haemoglobin levels will be checked after she receives her third dose of iron sucrose at the end of the month. If she has adequate iron levels, she will need no further intervention. Chaudhari and her unborn child will have adequate iron levels to ward off anaemia for some time to come.
Reporting for this story has been supported by ROSHNI-Centre of Women Collectives Led Social Action.
This story was first published here on Healthcheck.
(Yadavar is a special correspondent with IndiaSpend.)
We welcome feedback. Please write to [email protected] We reserve the right to edit responses for language and grammar.
4 of 5 Indian children do not survive cancer. What led to this sorry state?
How long does a cancer diagnosis take?
Six months, according to Bipin Jana, 45, whose eight-year-old son Parmeshwar has stage-4 Hodgkin’s lymphoma. That is how long it took the family, travelling 2,000 km across West Bengal, New Delhi and finally, Mumbai, to get an effective diagnosis and start treatment.
Parmeshwar is currently undergoing chemotherapy at the Tata Memorial Hospital (TMH), Mumbai, India’s foremost cancer treatment centre. Almost half (43.6 per cent) of the children with cancer admitted here had to travel over 1,300 km to reach the hospital, records showed. Up to 10 per cent travelled over 2,200 km and 20 per cent had undergone alternative or incomplete treatments before reaching TMH.
With timely diagnosis, children with cancer have a high rate of survival. If he lived in a high-income country, Parmeshwar would have had a 90 per cent chance of recovery. Since he is being treated, his odds are still better than India’s national survival rate for juvenile cancers–less than 20 per cent, according to the World Health Organization.
Worldwide, most children with cancer are from low- to middle-income countries and have poor survival rates, showed the study published in The Lancet Oncology, a global journal, in July 2019.
India has the highest prevalence of childhood cancer which can be traced to its higher population of young people, 30 per cent of its population is below 14 years, according to 2011 Census.
In order to understand why most children with cancer in India do not survive five years, IndiaSpend interviewed patients, non-governmental organisations and doctors. Delays in diagnosis, high medical expenses and non-completion of treatment are significant reasons, we found.
Survival rate can be 70 per cent with timely care
About 50,000 Indian children between 0-19 years of age suffer from cancer each year, according to The Lancet study we mentioned. “However we think the actual figure is closer to 75,000,” said Girish Chinnaswamy, head oncologist at the TMH.
Approximately 20,000 children remain undiagnosed and untreated and their survival rate is 0 per cent, he said. “For the 55,000 who are accessing treatment, 15,000 are receiving a good standard of treatment with trained oncologists as well as social, dietary and financial support and this group has a survival rate of 70 per cent,” he said.
The other 20,000-30,000 are visiting centres with less-trained oncologists and without holistic components such as education, social support and nutrition. Their survival rate is around 30-40 per cent, said Chinnaswamy.
“The problem is that families are not accessing appropriate treatment, or they are abandoning treatment once it has started,” said Anil Nair, chief executive officer of St Jude India ChildCare Centres (SJICC), which provides accommodation for parents and children undergoing cancer treatment in six cities including Mumbai.
Another factor is the high cost of treating paediatric cancers. “Unlike cancers in adults, cancers in children need a whole team of medical oncologist, radiologist, pathologist, internist etc,” pointed out Shripad Banavali, director, academics and professor of paediatric and medical oncology at the TMH.
No facilities in rural areas
Nearly 70 per cent of Indian population lives in rural India. However, nearly 95 per cent of cancer-care facilities are in urban India. India has 0.98 oncologists per million population, compared to 15.39 in China, 25.63 in the Philippines and 1.14 in Iran, as IndiaSpend reported in September 2017.
Centres such as TMH offer tertiary care which means that they offer specialised medical services. So the patient is likely to go to a doctor at a primary or secondary facility for a diagnosis, then he/she is sent to the nearest big hospital for treatment and finally referred to a cancer treatment centre.
The TMH treats 2,800 children with cancer each year. However there are less than 8-10 big paediatric cancer centres in India, and almost all are located in large cities such as Mumbai, Delhi, Pune, Bengaluru, Chennai and Kolkata, as per Banavali.
“We need at least 20 big centres that treat paediatric cancer in India,” he estimated. “We also need more paediatric centres and more people willing to come forward to fund treatment for children as the treatment is expensive.”
Long route to treatment
Parmeshwar’s own journey, starting from his village Nandigram in West Bengal’s south-eastern district of Purba Medinipur, illustrates the long route to treatment for most patients in India.
Parmeshwar had a high fever–for three months–which refused to subside despite treatment. His father worked as a dishwasher in a hotel in Mumbai but had to quit to care for his son. Parmeshwar’s illness was first misdiagnosed as typhoid and, then, malaria. After this the family travelled to Kolkata, where he was admitted for weeks in a hospital but got no treatment.
When nothing appeared to work, Jana brought Parmeshwar to the All India Institute of Medical Sciences (AIIMS), New Delhi, India’s best-known tertiary care centre. But no vacant beds were available for the child. Parmeshwar was then sent to Safdarjung Hospital, one of the five government hospitals in the city. It was here that he was put through an ultrasound test for the first time–three months after he first fell sick.
“The hospital staff asked me what were we doing, why it took so long to start the investigations,” recalled Jana. “I told them I kept telling doctors but no one listened to me.” Parmeshwar was then detected with Kala Azar or visceral leishmaniasis and underwent treatment for a month but did not get any better.
The doctors at Safdarjung Hospital then conducted a biopsy and a bone marrow test. He was finally diagnosed with stage-4 Hodgkin’s lymphoma. “Had I known it is cancer, I wouldn’t have waited for six months for diagnosis, I would have directly come to Mumbai,” said Jana, breaking down.
Parmeshwar was finally sent to TMH and the cancer treatment started in August 2019–six months after he first spiked a fever.
Parmeshwar, 8, with his parents Bipin and Mamata Jana, at the St Jude India ChildCare Centre in Mumbai.
“These treatments may not be sufficiently executed, which can ultimately make the cancer more resistant to treatment and as a result lengthen the process of treatment,” said Chinnaswamy.
Source: Tata Memorial Hospital records accessed by IndiaSpend
Note: Data for the year 2018
“This is not a direct journey either,” added Nair of St Judes. “Families have usually spent most of their money before they reach treatment, travelling from doctor to doctor and paying for different treatments before being referred.”
For children undergoing treatment, at least a third of the survival gap is due to unfinished treatment. Up to 90 per cent of children with cancer in lower middle-income countries will abandon treatment, compared to 15 per cent worldwide. It is estimated that lower middle-income countries account for 99 per cent of treatment abandonment worldwide.
Families abandon treatment to opt for traditional complementary alternative medicine (31 per cent), because of financial constraints (28 per cent), or false belief that cancer is incurable (26 per cent), found a study which analysed patients over six years at TMH.
“Just the cost of staying in Mumbai itself during treatment costs about as much as the treatment and this can force many families to head back home before treatment is finished,” explained Nair of St Jude’s.
Jana has spent close to Rs 1 lakh that he raised from friends and family members to pay for his son’s treatment. Once in Mumbai, the family was lucky enough to find a place to stay at St Jude’s. Facilities here include individual family living units, shared common kitchen and dining areas, educational and sanitary guidance for parents, and family counselling–all to give the child the best chance of beating cancer, said Nair.
Families that do not have access to facilities like this will often live on the footpath next to cancer centres for as much as two years, leaving the child vulnerable to secondary infections. Families thus survive without toilets or cooking facilities. The overall experience can leave families dejected and demoralised to the point where they often abandon treatment and return home.
“To eliminate these causes of abandonment, treatment requires a multidisciplinary team–oncologists, nutritionists, nurses, psychologists, data scientists, and social workers,” said Chinnaswamy. “This is the difference between at least 50 centres in the country which have a survival rate of 70 per cent, compared to the others which have 30-40 per cent.”
The introduction of social workers, financial assistance, accommodation, counselling, infection guidance control, school education for parents to the treatment process at TMH doubled the number of lives saved per year, reducing abandonment rate from 20 per cent in 2009 to 4 per cent in 2016, as well as the refusal to undertake treatment reducing from 9 per cent to 2.7 per cent, found a March 2019 study by the TMH.
While Bipin Jana is satisfied with the treatment his son has received in Mumbai, he regrets the six months wasted in getting here. “My son’s life is now in God’s hands,” he said.
This story was first published here on Healthcheck.
(Habershon, a graduate from the University of Manchester, is an intern with IndiaSpend. Yadavar is a special correspondent with HealthCheck.in and IndiaSpend.)
This article is republished with permission from IndiaSpend. Read the original article here
Vitamins and omega-3 fatty acids may help children with autism
Children with autism who take supplements of vitamins and omega-3 fatty acids may have fewer symptoms than kids who don’t, a research review suggests.
Researchers examined data from 27 trials involving a total of 1,028 children with autism spectrum disorder. Kids were randomly selected to take various dietary supplements, including vitamins or omega-3s, or to take a dummy pill instead.
Omega-3s and vitamin supplements were more effective than the placebo pill at improving several symptoms, functions, and clinical domains, researchers report in Pediatrics. Gains varied in the trials but included improved language and social skills, reduced repetitive behaviours, improved attention, less irritability and behaviour difficulties, and better sleep and communication.
“These results suggest that some dietary interventions could play a role in the clinical management of some areas of dysfunction specific to ASD,” said David Fraguas, lead author of the study and a researcher at Hospital General Universitario Gregorio Maranon and Universidad Complutense de Madrid in Spain.
Even though the analysis was based on controlled experiments — the gold standard for testing the effectiveness of medical interventions — the individual studies were too varied in what supplements they tested and how they measured results to draw any broad conclusions about what type or amount of supplements might be ideal for children with autism, researchers note in Pediatrics.
“The underlying mechanisms involved in the potential efficacy of dietary interventions in autism spectrum disorder are unknown, Fraguas said by email. “Our study does not assess this important question and current literature is inconclusive.”
New transplant research aims to salvage infected donated organs
Retired subway and bus driver Stanley De Freitas had just celebrated his 70th birthday when he started coughing, tiring easily and feeling short of breath. He was diagnosed with pulmonary fibrosis, a severe scarring of the lungs, and put on the wait list for a transplant.
“Life became unbearable. From the time I got up in the morning until when I went to bed at night, I struggled through every breath of air,” De Freitas, now 74, told Reuters by phone from his home in Toronto.
After two years, De Freitas was offered a lung, with one significant downside: The donor had hepatitis C.
In October 2017, he became the first patient enrolled in a just published study conducted at Toronto General Hospital testing a technique that aimed to flush out and inactivate the hepatitis C virus from donor lungs before a transplant.
The research comes amid a spike in available organs linked to the opioid overdose crisis, meaning many are contaminated by hepatitis C as the virus is commonly spread by sharing needles. Since it can easily infect an organ recipient, those organs are usually discarded despite the urgent need.
Data from the United Network for Organ Sharing (UNOS), which matches donors with recipients, shows that 97 percent of people waiting for a lung in the United States last year were unwilling to accept an organ from a donor who tested positive for hepatitis C.
While hepatitis C causes serious liver disease, the virus can be present in the blood in other organs.
Researchers are testing different approaches to salvage infected organs.
A study published in April showed that giving patients antiviral therapy just hours after transplant surgery can successfully attack the virus before it gains a foothold in the recipient.
Eliminating the virus prior to transplant would simplify the procedure for patients, said UNOS Chief Medical Officer David Klassen. It could also significantly cut down on wasted donor organs.
The technique used in Toronto, known as ex vivo lung perfusion, keeps organs “alive” outside the body by pumping them with a bloodless oxygenated liquid. They used ultraviolet C light to irradiate the solution, aiming to deactivate the hepatitis C virus and make it non-infectious.
Perfusion allows doctors to evaluate and potentially rehabilitate organs for transplant, and buys them more time than storage in ice boxes, which can cause tissue damage.
Toronto researchers used a solution from Sweden’s Xvivo Perfusion AB with the hospital’s own ex vivo lung perfusion system, a bubble-like machine made from off-the-shelf components and an intensive care ventilator.
The study of 22 patients, published in The Lancet Respiratory Medicine on Wednesday, had mixed results. Adding light therapy significantly decreased the amount of virus, but all but two of the patients contracted hepatitis C, which is now curable.
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