Gender and TB: Challenges Faced by Female Patients During Pandemic

Globally, the COVID-19 pandemic has had a disproportionate impact on women and girls and has put them at a disadvantage. The situation in India is quite similar with increased cases of domestic violence, more girls dropping out of schools, early marriage and less access to healthcare services.

Innovators In Health runs an active case finding TB program in Samastipur district of Bihar. During community interactions, it was observed, that while all patients faced difficulty in accessing timely treatment and care, female patients bore an additional burden because of gender norms and their relative position in the society. To understand these challenges, we spoke to 40 female patients across 8 blocks in Samastipur who were diagnosed during March-September 2020. A majority of them have shared how access to diagnosis, medicines, nutrition and quality care has been an enormous challenge for them during the pandemic.

Challenges faced by female patients

Presumptive patients outside a Primary Health Centre in February 2020. Photo by: Rohit Jain

Hesitance in accessing care

Some female patients reported they were hesitant in informing their family about their ill health during the lock-down because accessing healthcare services would mean additional expense, which would be a burden on their family. 24-year-old Rekha* was skeptical to tell her husband about her ill health when she first developed symptoms of TB in June 2020. Her husband, a migrant worker, had returned from Delhi the previous month. He had lost his job, and Rekha did not want to trouble him further. Her symptoms aggravated, and it was not until September when her condition was quite serious that she consulted a doctor. They diagnosed her with pulmonary TB and Rekha is currently undergoing treatment.

Insufficient nutrition

A major challenge for women was adequate nutrition during their treatment. As people lost their jobs, families had to reduced their expenditure, including that on food.  When there is a dearth of food at home, it’s the women who eat less to ensure the others get enough nutrition. Something similar happened with Sudha Devi*, whose husband and son both lost their jobs because of the pandemic. Sudha had started her treatment in March 2020 when the lock-down began. Sudha was anemic and weighed only 40kgs. With more mouths to feed and no income, the family naturally cut costs. For four months, they survived on rice, roti, dal and potatoes. Sudha ate twice a day, or sometimes even once, and her meals comprised roti and boiled potatoes.

Women involved with domestic chores. Photo by: Rohit Jain

Increased burden of domestic work

As huge number of migrant workers returned to their home states during the lock-down, the burden of work at home increased significantly for the women. The lock-down might have affected the paid jobs, but for women who are mostly engaged in the unpaid care work at home, there was no respite. Sushila Devi* was diagnosed with TB in May 2020. Although the ASHA in her ward advised her to rest properly, she could not afford to do that. When we spoke to her, she had tears in her eyes while sharing her ordeal, “There are ten members in my family. My husband, father-in-law and brother-in-law returned from Bombay in March. As schools and anganwadi’s were closed, all four children stay at home all the time. This means I have no time to rest. I wake up at 4am, cook food, clean the house, wash clothes, clean and feed the cattle and by the time I get to sleep at night it’s almost 10pm. My mother-in-law is unwell, so she cannot help me with the household chores. At times I feel I might faint due to running around the whole day. But what else can I do?”

Stigma faced by women

The coronavirus scare added to the stigma faced by TB patients, whose symptoms are similar to that of COVID-19. 20-year-old Puja* started having symptoms of TB in June 2020. Initially, she had fever and cough, but within a month her situation got very serious. Luckily, the ASHA of her ward stayed few doors away and as soon as she saw Puja’s condition, she suggested her family to get her tested for TB. Puja’s father was against the idea, he feared that Puja might have COVID-19 and informing the health authorities would attract unnecessary attention from his neighbours and ruin his daughter’s prospects of marriage. He was adamant that they would treat her at home with the help of the local rural medical practitioner. It took multiple visits by the ASHA and IIH field coordinator to convince Puja’s family to get her diagnosed for TB. Eventually she was tested positive for TB and is currently on treatment. 

The above cases of Rekha, Sudha, Sushila and Puja are not isolated ones. Rather, this is the norm for many other female TB patients who are battling a dangerous disease along with the burden of living in a patriarchal society. Actively involving female community health workers in TB care is crucial as women interact with them often to discuss their health issues. This will increase chances of women self-reporting their symptoms and accessing care without much delay. While designing policies and programs for TB, it is important to keep in mind these additional hidden challenges faced by women which invariably affect their health and well-being.

*Names changed to protect identity.

Featured image by: Amrit Vatsa [All photos have been clicked and published with due consent.]

Blog by: Dyuti Sen

A Silver Lining for Public Health in a Coronised World

Growing up, I believed the British-rule in India as one of loot and destruction alone. Hate slowly gave way to some reason, as I learned about architectural marvels and systems that still power 21st century state. Just as Europe colonised the world and plundered its resources, COVID has ‘coronised’[1] it and left us devastated. We are resisting, losing and yes, winning as well in some corners globally. The loss and fear out-shines any positive realm of light but if we wish to be hopeful of tomorrow, a flame needs to be lit today.

At IIH, we have invested a decade of work with the public health system (PHS). Our mutual engagement is limited to focused groups – ensuring care for tuberculosis (TB) patients, expecting and young mothers with newborns. When COVID was flagged as pandemic, everyone knew an unprecedented calamity is to strike us but we expected a heightened response to the standard mitigation protocol. As usual, we imagined army called for rescue, powers being centralised, taxes raised, etc. It’s pre-emptive with every disaster because governments are not prepared for it with routine employees. Our thoughts shattered when this was not fulfilled, an unprecedented shift as the infection itself. Hospital facilities were being managed through regular staff and trainees. Everyone was charged up, to follow the extra-mile serving against an invisible enemy and insurmountable odds. Our health system was not ready to manage a plethora of sick. There was significant pressure from the top but these doctors and para-medics delivered. Majority turned up to work on all 7 days a week and proved that given an opportunity with proper logistical support, they can do wonders. Thanks to them the health system is alive and the army is doing what they best do. The crisis has tested our potential and taught life-long lessons too.

We decided to step up and join the PHS functionaries’ mitigation efforts. Neither of us had an expertise nor essential resources for a healthy response. A match of the sense of thought to respond together as one, was our first win. A joint venture whose tenets were mutually decided and delivered. When we offered room to alter our list of support under COVID, the PHS Leads responded with unconditional approvals of our work. State Health Society, Bihar arranged 4 new ventilator support system for the district hospital – a first ever in its history. IIH will support these machines with advanced multi-parameter patient monitors, making it more effective. An additional 50 bed critical care unit at our sub-divisional block (Dalsinghsarai) has got centralised oxygen gas pipeline system allowing contactless oxygen support to patients on intensive care. Ownership for the unit will be transferred to the hospital authorities, so it may be used post-COVID as well. To augment testing for COVID suspects, IIH initiated a recruited, trained and deployed 5 lab technicians for a period of 6 months with the district testing facility. Together, these technicians conduct at least 300 tests a day during this crisis. This has boosted the examination of samples by almost 15% for the district. Besides, IIH personnel are working to support the district health authorities with fresh recruitments, technical support and intensive awareness campaigns on community level.

Moreover, our TB program which is operational even during lockdown has been reporting very healthy diagnosis levels as compared to pre-COVID period. Despite of a 90% drop-in field-based activities, we have ensured 81.4% case-finding over the last quarter. We tweaked our techniques to adapt as per the need, without compromising much on the quality. Not to forget, TB is a silent monster and as current public facilities get overwhelmed due to COVID, patients with TB are at the losing end. IIH has tried to plug-in the gap with employing telemedicine, sputum collection from clients’ door-step and arranging timely drugs delivery with fabric masks. Such feats will definitely place the district amongst the best performers in the state.

As part of advocacy, we get to meet several stakeholders often but it’s a challenge to convince everyone with our purpose. I struggle to re-collect the face of any individual, who denied engaging with me during this crisis. From guards to managers and medical officers to civil surgeon, everyone welcomed. Forget the door-step sputum collection and drug delivery, my colleagues have observed the value of a fabric mask, they shared with a TB patient during lockdown. Our ASHAs take pride in being associated with the IIH family, when suddenly multiple of her family members report COVID positive and she is looked down by her neighbours, while IIHers care for her and assure necessary help. Employees in PHS remember your name, dial back if you solicit help, hear you for a longer time, treat you as a friend and confidant over a phone call. If you visit them, you no longer wait but get priority over others, approvals are fast-tracked, your opinion on everything matters, physical files that concern you are shared with you directly so one could help oneself with any information. IIH has filled a huge void, that got created with the shifting out (due to lockdown) of the INGOs personnel that supported the district health system routinely.

Post-COVID, this strong rapport will help us collaborate and work better to realise other objectives. We shall be more confident of our actions during engagement. The coronised world has inflicted huge pain but has touched few positive chords as well, one that binds us closer and has taught to adapt.

[1] A person infected with COVID-19, is considered to have been coronised, matching with the sentiments of a colonised world.

Blog by: Homam Khan

Support to TB patients during the pandemic: Stories from rural Bihar

On the morning of 8th May 2020, Umesh* got a call from Sangeeta, a field staff working with Innovators In Health, regarding a certain sum of money (INR 1000) that had been transferred to his bank account. 28-year-old Umesh is currently undergoing treatment for TB. He quickly got up, brushed his teeth, took his bank passbook, and went to the bank, located 3kms away to withdraw the amount. Umesh had been buying essential food items on credit from the local kirana shop for the last two months. Due to his illness, he could only do some light work in the field for which he received a paltry sum. But the pandemic and eventually the nationwide lockdown made it difficult for him to find a job. This was a huge setback, as he was the sole earning member of his family of seven.

When the lockdown was announced in India during the last week of March, several people like Umesh were forced to be in a situation where they couldn’t arrange two square meals a day for themselves and their families. Moreover, he was already battling a disease that had adversely affected his health for months now. At Innovators In Health, we realized the gravity of the issue and wanted to help out the TB patients overcome these difficult times. We started an online fundraiser campaign on Milaap and reached out to the people in our network for donations. Within two months, we raised INR 4.2 lakhs, which we used to make direct cash transfers (and in some cases, nutritional support) to nearly 670 TB patients in Samastipur district of Bihar. Along with the amount fundraised, one of our current donors also supported our patients in these unforeseen times.

IIH team member Navneet, delivery ration to a TB patient’s house.

Our team located in different blocks helped us identify those patients who were in dire need of help. They coordinated with the patient or the ASHA to get the bank details of these patients. Initially, we had planned to provide nutritional packages to these people, but later we decided against it for a couple of reasons. Firstly, amidst the lockdown, it was a logistical nightmare to deliver food packets to people located in different villages. Secondly, and most importantly, we realized that in such times different families would have different needs. For some TB patients, who were unable to access their bank accounts, our dedicated team members delivered ration at their doorsteps. When we asked a team member Navneet on his thoughts about providing ration and the risks attached to the activity, he told us, “Our patients need our help. We can see the situation they are in. During telephonic conversations with them, they are unable to hide the distress. I think this is worth risking my life. Moreover, with proper precautions and safety measures, we can minimize the risk for ourselves and the patients.”

Last month when we spoke to some of the patients who received support in cash, we were glad that we gave them an untied fund instead of food packets. Each of them had used the money in different ways, suited to their family’s needs. While Parwati Devi* used the money to buy milk and eggs for herself and her husband, another patient Biro Das* cleared his debts with the local kirana shop and bought medicines for his unwell daughter. All the patients were glad that they received support from strangers during the pandemic. When we called Vimla Devi*, who was also undergoing TB treatment, she gave a beautiful message for the donors, and she said, “I can’t believe that strangers have helped me in such difficult times. My own family and relatives have refused to support me because I am already suffering from TB. Please tell those people that whenever they visit Bihar, they are welcome in my house.”

The pandemic has wreaked havoc in all our lives, yet some of us have been fortunate than others. Amidst the chaos and uncertainty, it’s heartening to see how the civil society has stepped up to support those less fortunate amongst us.

*Name changed to protect identity

Blogy by: Dyuti Sen

Woes of private Tuberculosis patients amid lockdown and COVID19 crisis

The nationwide lockdown in India had created an unprecedented vacuum in the domain of drug adherence of tuberculosis patients be it public or private patients. It has put forth challenges for patients in accessing care from both public and private health care providers. While some private clinics/nursing homes/hospitals had closed temporarily fearing further spread of coronavirus, others have been operating to tackle the rising cases of COVID19. We are a community-based organization working for the private as well as public tuberculosis patients right from case identification to monitoring patients till the completion of their treatment. In such crisis situations, our role as an NGO magnifies as people approach us in case of healthcare emergencies. It is obvious that they put that kind of trust on us in seeking guidance to share the different issues including shortage of medicines and/or inability to purchase medicines owing to poor financial condition.

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Through telephonic follow-ups, we have been in constant touch with our private patients amidst the lockdown and now during the unlock phase. During our telemonitoring of private patients we got to know many issues pertaining to the availability of the medicines with the patients. We found that nearly 14% of the private patients were on verge of defaulting their treatment. Most of them belonged to very poor families totally dependent on earning from the daily wages. But the lockdown has stopped their source of income and compelled them to choose food over medicine. In addition to this, unavailability of means of transportation pose another kind of challenge to them. A small fraction of patients were ready to save from their expenses on food and use this savings for the medicine but they were unable to purchase medicine as transport restrictions made it difficult for them to approach any other hospital or doctor further away from home.

In early April 2020 when we spoke to Ramdayal (name changed), one of the TB patients, he told us, “My right leg is swollen and I don’t know whether it is due to side effects or anything else. I am unable to walk and do other routine work. But right now, without a check-up or medicines, I find myself in an unseen risk.” Ramdayal’s woes did not end there. In one week, he wwas about to run out of his regular TB medicines. “If the lockdown is extended and I am not able to go and get more medicines, I don’t know what I will do,” said Ramdayal. This kind of narrative of side effects or health issues were found in the case of many patients.  We have approached the district health officials in this regard and they assured to do something for these patients. But the entire public health system is already overwhelmed with the COVID19 response, leaving little scope to focus on other health indicators.

In the last three months, we have provided medicines to most of the private TB patients in our catchment who could not access them either due to lack of money or transportation facility. We hope to continue doing this so that patients like Ramdayal do not default on their treatment. If the central as well as state governments do not resume case finding, diagnosis and treatment of TB patients with full force then it will affect millions of Indians in the months to come.

Cover photo: The Global Fund

Blog by: Pitamber Soren

Weaving Well-Being: Tailoring Technology & Training Community Cadres to Address Postpartum Depression

Unlocking Postpartum Depression in rural Bihar

Basanti Devi rests by her small thatched hut with a two-week old baby. For 19 year-old Basanti, this is her second unwanted child in consecutive years. Being anaemic, her child weighed merely 1950 gms as it was preterm birth. Post-delivery, she left early from the government health facility fearing squander of her savings, as she was asked to fetch an out of stock drug from market.

“When can I go to get grass?” a weary eyed Basanti asked Swetanjali (community health worker) as a neighbour arranged feed for her small ruminants. Her concern is genuine as her postpartum (post-pregnancy) recovery is delayed due to complications, sleep is compromised at night due to emotional distress, while elder daughter consumes her day’s peace. Basanti stays alone with her children, surviving through meagre remittances from husband, who works as a mason in a metropolis.

Several such women as Basanti, narrate the many indescribable changes to their life post pregnancy. Nearly half[1]of all adolescents are married early, thus leading to early conception, further compromising their agency and autonomy. Young girls with unmet needs of family planning struggle to live up with the collective social expectations. They are unable to confide in others, as network of old friends is lost and newer alliances cannot be formed due to restrictive social sanctions. Her coping mechanism gives in when faced with wide gamut of problems that she has no solutions to, not even an empathetic ear, forget an open heart and mind.

Such woman can slip into postpartum depression (PPD), when they start to lose sense of reality, feel irritated, find difficulty in associating events, are emotionally pained or possess thoughts of self-harm, within 4 weeks of giving birth or as late as 30 weeks. It disrupts their daily routine, impairs cognition and induces withdrawal. In certain cases, perinatal (pre-birth, during pregnancy) depression transforms to postpartum depression. Thus, an effective intervention design must consider building resilience amongst pregnant woman and preventing PPD in young mothers.

Setting Up Treatment at Home

An approach to treat PPD has been found in cognitive behaviour therapy (CBT). It has proven potential in resource-constrained settings, wherein local community health workers are trained to screen clients and deliver counselling sessions at clients’ home, when found positive for PPD. Selection of sessions for counselling and their chronology is derived from the relative risk factors (poor nutrition, complications during pregnancy & after birth, family estrangement, lack of personal care and rising distress) assessed during screening of client. Merely adjusting to clients’ time is significant for rapport-building and re-assuring that she is cared by one. Something very small but remained a distant dream otherwise.

All this requires consistent training of local community health workers (mostly ASHAs) but they are disenchanted with the health system for their long-pending entitlements. After facing the customary resistance, our concept impressed them when they could time travel back and realise that postpartum psychiatric disorders (that usually includes blues, occasionally transforms to depression and rarely into psychosis) had affected them in the past. Soon, it became a subject of poignant interest and surprisingly filled them (us too) with thrill to learn and engage with other community women.

Winning ASHAs confidence and interest, got our tough job a notch lighter and certainly joyful. We sieved out and deconstructed all relevant jargons employed in CBT techniques to local dialect for conceptual clarity, packed them up with illustrations, developed role-play exercises and ensured active participation. Simple single page forms were designed to document session learnings, challenges and techniques employed by counsellors. As training progressed, confusions mounted on usage of most appropriate techniques in certain situations. This called for more rigorous practice and our battery of counsellors undertook it all. By now, we were convinced that we could not have found a better resource than them and were good to go.

Follow up home-visits were scheduled fortnightly, wherein previous experience is reflected by the counsellor and counselee. The idea is to help the client find her strengths and make her believe in her decisions. For ease of acceptance, practice of including a family member / neighbour is encouraged as session’s progress. This not only ensures supportive supervision but also brings comfort and confidence amongst family members who felt skeptic about sessions.

Informative flyer for the mobile based intervention.

Besides, we tested the efficacy of mobile technology in combating PPD with similar content in form of audio dramas, which was never tried. The deep penetration of mobile phones in rural households was harnessed, for delivery of free audio content at fixed intervals. This mhealth intervention was conceptualised to assess, if clients reported early or better recovery when provided with another layered service, apart from receiving home-based counselling session.  Tapping onto the best technological resources nationally & pooling local strengths, we developed an audio platform with a dashboard, connected to a central server. Script-writing and recording was ensured by local team on a low-cost crate developed for sound-proofing. Post-edit on an open-access software, our episodes were good to publish.

The intervention was received with aplomb in the community, contrary to our fear of falling apart. Listeners were not just staying longer to listen a repeat of same content but were also sharing it to their peers and relatives in other geographies, something that we learnt later. The service clocked over 4000 calls in a span of 6 months with average listenership being around 5 min/call. This was an unprecedented feat for us on multiple ends. Women with no depression frequently used the mhealth intervention, their higher usage of the service prevented them from being mildly depressed. This received critical acclaim from several quarters, as it was made possible in a state that is highly under-resourced with mental healthcare professionals and facilities.

Our foot soldiers of CHWs and their locally developed tech interface prevented mothers from being depressed and build their resilience against PPD. In underserved communities as ours, this can be a boon if existing systems are strengthened and technology is used to augment efforts.

[1]National Family Health Survey-4 (2015-16) places Bihar amongst the top states that report early marriages in the country, while Samastipur district recorded 52.3% marriages <18years

Blog by: Homam

परंपरागत तरीके से चल रहे MNH परियोजना को नये तरीके से सोचने का मौका दे रहा COVID-19

मेरा नाम स्वेतंजलि झा है, और में IIH  में पंचायत कोऑर्डिनेटर (PC) के पद पर काम करती हूँ | PC के तौर पर मुझे 4 पंचायत संभालने का ज़िम्मा दिया गया है, जिसमे चल रहे TB और मातृ नवजात स्वास्थ्य परियोजना  (MNH) की सभी गतिविधियों को कोर्डिनेट करना होता है |

IIH एक समुदाय आधारित संस्था है , जिसका मतलब है सभी लाभार्थियों के साथ मिल कर काम करते हैं , और अपने काम का ज्यादातर समय समुदाय के बीच में रह कर बिताते हैं; जैसे TB परियोजना में संभावित TB रोगी खोजना , उनका सरकारी अस्पताल में जाँच और पुरे इलाज के दौरान उनकी मदद और काउन्सलिंग करना | मातृ और नवजात शिशु कार्यक्रम में हम सर्वे कर गर्भवती महिलाओं को खोजते है , हाई-रिस्क सभी गर्भवती की पहचान करना , नवजात बच्चे की देखभाल , इत्यादि तरीके से हमें फील्ड पे काम करना होता है | हमारा प्रमुख उद्देश्य है की समुदाय को गुणवत्ता पूर्ण सेवा प्रदान करना, और किसी भी लाभार्थी की अनिश्चित मृत्यु को रोकना |

Shwetanjali counseling a MNH beneficiary in Dalsinghsarai, before lockdown.

परन्तु, अब COVID -19  वैश्विक महामारी के चलते भारत भी अब लगभग 5 हफ्तों से लॉकडाउन पे है , जिसके तहत सभी नागरिकों को घर के अंदर  रहने की सलाह दी गई है, और केवल जरूरी सेवाएं चालू रहेंगी | लॉकडाउन के चलते सभी NGO को भी घर से काम करने की सलाह दी गयी है |

लॉकडाउन का सुनके  मेरा पहला विचार था कि हम जितना भी काम करते हैं , सब फील्ड मैं करते है , फ़ोन पर यह सब कैसे संभव होगा? क्या क्या कठिनाई आएगी? कैसे उनसे निपटा जायेगा? ऐसे में लॉकडाउन शुरू हुआ ही था की एक हाई -रिस्क गर्भवती को आपातकालीन सहायता की ज़रुरत पड़ी|

सुनीता* 9 महीने की गर्भवती महिला है, उसको सुबह से ही हलका हल्का  पेट में दर्द हो रहा था, लेकिन जब दर्द बरदाश्त के बाहर हो गया तो उन्होंने अंजू* जी को फ़ोन घुमाया | अंजू देवी पगडा में आशा के  पद पर काम करती है | लॉकडाउन के चलते ना एम्बुलेंस का इंतज़ाम हो पाया , और पैसों के अभाव के कारण न किसी प्राइवेट गाड़ी का , ऐसी स्तिथि  में सुनीता  के चाचा उसको ठेला पे बैठा के नज़दीकी सरकारी अस्पताल लेके गए| जब सुनीता को बिना जटिलता के डिलेवरी हो गया, बच्चे ओर मां दोनों सही सलामत घर आ गए, तब राहत मिली| आम दिनों में ऐसे सभी इमरजेंसी केस हम शारीरिक और मानसिक तौर पे लाभार्थी के साथ रह कर हैंडल किया करते थे, चाहें सुबह 9 बजे हो या रात के 1 बजे |

इन सभी चुनौतियों में कई तरह की सीख भी छुपी थी , या कह सकते है  सारगर्भित विचार छुपे थे; जैसे की तकनीकी तौर पे हम फ़ोन के इस्तेमाल से कैसे केस हैंडल कर सकते  है भविष्य में | सामुदायिक तौर पे हमें सभी लाभार्थियों के साथ और ज़्यादा मेल – जोल बढ़ाना और उनका पूर्ण विश्वास जीतना होगा, और ऐसे परिस्तिथि के लिए तैयार करना होगा | आस-पड़ोस की वह महिलायें जो नि:स्वार्थ समुदाय की मदद के लिए तैयार हैं , उनको चिन्हित कर ट्रेंन करना होगा , जिससे समुदाय का सशक्तिकारण  हो सके | कॉउंसलिंग के दौरान सभी लाभार्थियों को एम्बुलेंस के बारे में भी बताना होगा, प्राइवेट गाड़ियों के नंबर साझा कर उन्हें समझाना होगा की अपने स्वास्थ्य के लिए खुद से पहल कैसे करनी हैं |

स्थानीय स्वास्थ्य  प्रणाली जैसे की ANM , प्रभारी के साथ अपना रिश्ता और मजबूत करने की जरुरत है ताकि किसी भी लाभार्थी को प्राइवेट डॉक्टर के पास जा कर बहुत सा पैसा खर्च करना न पड़े |

कुछ चीज़ो को घर बैठे फ़ोन के माध्यम से भी करना संभव नहीं है, जैसे की नवजात बच्चे में हाई- रिस्क को पहचानना क्यूँकि वाट्सएप्प  वीडियो कॉल और ज़ूम कॉल जैसी सुविधाएँ अभी सभी गांव-घर में  नहीं पहुंची है | एक PC के तौर पर भले ही मेरे फील्ड में जाना कम हुआ हो लेकिन ज़िम्मेदारियाँ कम नहीं हुई | आज भी सुबह से शाम फ़ोन के माध्यम से किसी प्रकार की परियोजना को लेके कोआर्डिनेशन चलता रहता है | इसमें कोई दोराय नहीं की लॉकडाउन के चलते हमें नए ढंग से काम करने की सीख मिली और सोचने का मौका मिला की हमेशा से चलते आ रहे काम को एक NGO कैसे नये रूप से देख सकता है |

* Names have been changed to protect identities of people.

Blog by: Shwetanjali Jha

COVID- 19 के वजह से हुए लॉकडाउन के दौरान TB और HIV से प्रभावित व्यक्तियों की मुश्किलें

वैश्विक महामारी कोरोना वायरस (COVID -19) के संक्रमण को रोकने के लिए राष्ट्रव्यापी लॉकडाउन है, आसान शब्दों में कहें तो तालाबंदी। इस स्थिति में जैसे बीमारियों का भी ‘वर्गीकरण’ हो गया है, और बीमार व्यक्तियों को लोग दो तरीके से देख रहे हैं। एक जो कोरोना से प्रभावित हैं, दूसरे वो जो अन्य बीमारियों या संक्रमण से लड़ रहे हैं। स्वास्थ्य विभाग, मीडिया, सरकार और आम लोग कोरोना के संक्रमण को रोकने, और इससे प्रभावित व्यक्तियों के प्रति अधिक सजग और संवेदनशील हैं।

हालांकि, यह एक बहुत ही सकारात्मक बदलाव है, स्वास्थ्य जैसे विषय पर इस तरह की जागरूकता और संवेदनशीलता बहुत ही कम देखने को मिलती है, या शायद पहले कभी ऐसा नहीं हुआ था।  दूसरे वो जो कोरोना के अलावा अन्य बीमारियों और संक्रमण से लड़ रहे हैं। उनकी जान को भी खतरा है, उनसे भी संक्रमण फैलने की संभावना है, और वे भी मर रहे हैं। पहले जैसी स्थिति होती तो शायद उन्हें समय पर इलाज की सुविधा मिल जाती।

इन दिनों अन्य बीमारियों से प्रभावित लोगों को किन समस्याओं का सामना करना पड़ रहा है। इन तीन TB से प्रभावित व्यक्तियों ने हाल के दिनों में इसका अनुभव किया, उनमें से दो HIV पॉजिटिव हैं जबकि एक को मल्टी ड्रग रेसिस्टेंट (MDR) TB है। 

उनके नाम यहां बदल दिए गए हैं ताकि उनकी निजता का उल्लंघन न हो।

प्रमोद राम, वीणा देवी और रौशन कुमार गांव में रहते हैं और परिवार के भरण-पोषण के लिए मजदूरी पर निर्भर हैं। प्रमोद राम, 40 वर्ष, गाँव के चौक पर एक पेड़ के नीचे जूते-चप्पल सिलने का पुश्तैनी काम करते थे, वीणा देवी, 25 वर्ष,  गर्भवती हैं और उनके पति दिहाड़ी मजदूरी करते हैं , जबकि रोशन कुमार, 20 वर्ष, गाँव के अन्य युवाओं की तरह मजदूरी के लिए दूसरे राज्य में चले गए थे।

ये लम्बे समय से बीमार थे। मार्च के दूसरे सप्ताह में, उन्हें संभावित TB मरीज के रूप में स्क्रीनिंग किया गया और प्राथमिक स्वास्थ्य केंद्र में जांच के लिए भेजा गया, जहां प्रमोद राम और वीणा देवी को drug sensitive टीबी और रोशन कुमार को MDR टीबी होने की पुष्टि हुई। TB मरीजों को HIV जांच किया जाता है जिसमें वीणा देवी और प्रमोद राम को HIV पॉजिटिव होने की पुष्टि हुई। डायग्नोसिस प्रक्रिया को पूरा होने में लगभग एक सप्ताह बीत गया। TB+HIV पॉजिटिव और MDR मरीज आगे के उपचार के लिए जिला अस्पताल रेफर कर दिए जाते हैं।

20 – 23 मार्च के बीच तीनों लोग जिला अस्पताल गए थे मगर उस समय उन्हें TB और HIV से संबंधित उपचार, दवाइयां और अन्य सुविधाएं नहीं मिलीं, जबकि उनकी हालत बहुत गंभीर थी, उन्हें तुरंत चिकित्सा सुविधा मिलनी चाहिए थी।

मार्च के तीसरे सप्ताह से, स्वास्थ्य विभाग कोरोना वायरस के खिलाफ जंग के लिए तैयारी कर रहा था, इस वजह से इन तीनो को एक – दो दिनों के बाद आने को कहा गया। कोरोना वायरस के संक्रमण को फैलने से रोकने की तैयारी और कोरोना से प्रभावित व्यक्तियों की इलाज के लिए सरकार और सार्वजनिक स्वास्थ्य प्रणाली का प्रयास सराहनीय है। मगर TB और HIV की महामारी भी लोक स्वास्थ्य के लिए एक चुनौती है।

TB और HIV दोनों संक्रामक रोग हैं जो एक व्यक्ति से दूसरे व्यक्ति में फैलता है। UNAIDS के अनुसार, 2017 में भारत में HIV से संक्रमित लोगों की कुल संख्या लगभग 21 लाख थी, 88000 लोग newly infected थे और उस साल एड्स से जुड़ी बीमारी से 69000 लोगों की मृत्यु हुई थी। World Health Organisation (WHO) के अनुसार, 2018 में टीबी से संक्रमित लोगों की कुल संख्या 26.9 लाख थी, उनमें से 92000 लोग HIV और TB दोनों से संक्रमित थे और 1.3 लाख को MDR TB था। और 2018 में TB से लगभग 4.49 लाख लोगों की मौत हुई थी।

सार्वजनिक परिवहन की आवाजाही पर प्रतिबंध है इसलिए प्रमोद राम, वीणा देवी और रोशन कुमार के लिए जिला अस्पताल जाना संभव नहीं था। परिणाम स्वरूप उनकी हालत गंभीर होती जा रही थी, विशेषकर प्रमोद राम की।

Innovators In Health (IIH) के स्थानीय कार्यकर्ता फोन के माध्यम से तीनों के संपर्क में थे। लेकिन उनके पास इस समय ज्यादा विकल्प नहीं थे कि वे उन्हें कोई सहायता प्रदान कर सकें। 4 अप्रैल को IIH कार्यकर्ता की प्रमोद राम से फोन पर बात हुई , उन्होंने बताया कि वह बहुत कष्ट में हैं, दिन पर दिन स्थिति ख़राब होती जा रही है, मदद कीजिए अन्यथा अधिक दिनों तक जीवित रहने की संभावना नहीं है।

6 अप्रैल को प्रमोद राम, वीणा देवी और रोशन कुमार ने IIH के सहयोग से जिला अस्पताल से इलाज कराया। अब वे दवा ले रहे हैं , कुछ राहत मिली है। कोरोना महामारी के कारण उस दिन भी जिला अस्पताल में कुछ आवश्यक सेवाएं आंशिक रूप से प्रभावित थी। लेकिन वे बहुत खुश हैं कि उन्हें सरकारी अस्पताल से इलाज की सुविधा मिली। क्योंकि उनके लिए कोई दूसरा विकल्प नहीं था।

जिस मरीज की जीवन खतरे में है या जिनसे घातक संक्रमण फैलने की संभावना है, क्या उन्हें उचित चिकित्सा देखभाल समय पर मिलनी नहीं चाहिए? गंभीर महामारी की स्थिति में भी क्या उन्हें भी एम्बुलेंस सुविधा नहीं मिलनी चाहिए? क्या उनके लिए भी आवश्यक सेवाएं उपलब्ध नहीं होनी चाहिए?

न तो ये प्रश्न असाधारण हैं, न ही इन प्रश्नों का जवाब मुश्किल है। मगर प्रमोद राम, वीणा देवी और रौशन कुमार जैसे बहुत सारे लोग होंगे जिनके लिए शायद इन साधारण प्रश्नो के जवाब देना मुश्किल हो सकता है।

Blog by: Sunil Kumar

Cover photo by: Rohit Jain

Pedaling Towards ASHA Empowerment in Rural Bihar

Shashikala paces towards the PHC for ASHA day as soon as the clock strikes 11. Her ordeal to convince her son who is 16 to be home as soon as his tuitions get over by 10 AM was again unyielding. With no one in sight to chaperone, she is left with no other option but to walk 8 Kms of dust-filled roads and once again go through the humiliation of being late to work. Shashikala Devi lives in Shivajinagar Block of Samastipur District in Bihar. She is the ASHA (Accredited Social Health Activist) of Ward no 8 in Dahiyar Panchayat. Functioning as an interface between more than 1000 residents in her ward and the public health system she has to periodically travel to the Primary Health Centre (PHC).

Photo courtesy: indiarailinfo.com

Similarly, the only mode of transport connecting Rinku Devi and the Primary Health Centre in Hasanpur is a local train. She has to finish her chores by 8 AM to catch the “9 Bajiya” i.e. the 9 AM train to reach Hasanpur Railway station from where she will walk 2 km to get to the Primary Health Centre. The ordeal doesn’t end here, she must finish her work by 2 30 PM to catch the return train at 3 PM, which she often ends up missing and has to wait till 7 PM to catch the next, which is also the last one. 

ASHA is the first port of call for any health-related demands of deprived sections of the population, especially women and children. She also serves as a depot holder and supplier for Oral Rehydration Therapy (ORS), Iron Folic Acid Tablet (IFA), chloroquine, etc and performs several other duties that make her role peripatetic. Shashikala’s and Rinku’s stories aren’t an anomaly but a norm for more than 70 percent ASHAs working in Samastipur, Bihar. Some wait for their sons or husband to give them a ride to work or make peace with walking more than 15 km every day. Depending on roadways isn’t an option for many as the public transport network in rural Bihar is sparse and often delinquent. Even if the roadways are accessible to some it comes with multiple questions around the safety of women.

Constrained (daily) mobility bears a multifaceted impact upon the overarching aim of ASHA empowerment. Dependency on others for basic movement not only impacts the self-worth of these women but also dampens the quality of work and opportunities of growth associated with the same. Innovators in Health (IIH) works with ASHAs to strengthen the National TB Program. Being a close witness to the plight of ASHAs it became incumbent upon us to address these constraints of mobility to truly empower them. IIH is trying to establish freedom of mobility through training ASHAs to ride bicycles. Bicycles have been linked to the empowerment of women since their invention in the late 1800s. In rural Bihar, cycling is considered a man’s domain and the sight of a woman on a cycle is considered impractical. The Mukhyamantri Balika Cycle Yojana in Bihar played a significant part in the feminization of bicycles. Still, it is unprecedented to come across ASHAs being in the age group 25-45 and restricted by multiple social and cultural norms, using cycle as a mode of transport. 

Young girls from the community helping ASHAs with balancing.

There was initial scepticism when the idea of organizing cycle training for ASHAs was first discussed within the organization. But as we met a group of 15 ASHAs in Shivajinagar to share the idea all the mistrust in our minds evaporated. The enthusiasm and acceptance shown by the group were inconceivable. They didn’t perceive the idea as another half-hearted approach to strengthen the basic unit of the public health system but a chance at a new way of life. Girls who received bicycles from the government are facilitating these trainings as incentivised trainers in fields nearby these ASHAs.

IIH team member Ashish explaining basic functions of a cycle to ASHAs from Shivajinagar.

Although many colossal issues need to be addressed once these women take their bicycles out of the secluded training grounds to roads traversing the society. As of now our ASHAs look prepared to deal with some flat tires along the way. This training won’t change the plight of ASHAs or other women overnight but will serve as a conversation starter around a broader social change. We hope our initiative will act as a strong stepping stone on the path to untrammelled womanhood.

Blog by: Smriti

Prevalence of Anemia in Pregnant Women in Rural Bihar

It was the last week of July, 2018. Dalsinghsarai, a block in Samastipur district of Bihar was dealing with a critical issue of maternal and new born deaths. These deaths had instigated a series of investigations like social autopsy, analysis of existing events along with evaluation of the responses by various stakeholders. All this was being done to prevent such future instances by an organisation called Innovators in Health (IIH). It was the organisation’s third year working on Maternal and Newborn health in 48 most vulnerable wards of Dalsinghsarai. The shocking analysis had not disclosed something new but age-old practices prevalent in the region.

Here are some of those, combined with lack of institutional insulation in Dalsinghsarai:

Crisis of Institutionalized Myths and Patriarchy

The major cause of the two maternal deaths was Post-Partum Haemorrhage (PPH)*. Both the women had lost their lives on the way to the closest district governmental hospital in Samastipur. The fact that women have been bearing this fate has a number of reasons. One of the primary reasons is the high prevalence of anemia in the region. Haemoglobin at 9 g/dL points is considered to be a good level in this region when it should be around 13 g/dL. Most women here have an average weight ranging between 35-45 kg during pregnancy barring a handful of outliers touching the 50 kg mark. They have innumerable myths associated with the low haemoglobin and body-weight, like:

  1. The child will become heavy and huge in case pregnant women eat too much or too many times.
  2. The child will be thin and unhealthy (showing bones), if supplements are taken regularly.

Owing to the above myths, women eat only twice a day, once early morning and then late in the evening. They don’t even take the Iron and Folic acid tablets during their pregnancy. Consequently, in case of heavy bleeding after delivery, saving their lives is contestable. This is because due to heavy bleeding, the haemoglobin levels dip to even 4 g/dL points. It can also be attributed to a few patriarchal traditions, as follows:

  1. The women eat in the end, after feeding everybody. With little or no food, they satisfy their hunger.
  2. In case of excessive weakness, when women confess difficulties to their mothers-in-law, they are coerced to think of this as a generic issue around pregnancy for which they are not taken to the doctors.
  3. The practise of not eating salt, vegetables, or protein post-partum.

The belittling of such important issues is a product of long existing patriarchal beliefs where not just the men but even elderly women, knowingly and unknowingly, become the torch bearers of inequality. As Ani-Di-Franco rightly said,
“Patriarchy is like the elephant in the room that we don’t talk about, but how could it not affect the planet radically when it’s the superstructure of human society.”

Role of IIH in deinstitutionalising the patriarchal belief systems

At IIH we try to break these barriers through a two-pronged approach. The first amongst these is a door-to-door counselling model. Since, our team consists of people from these villages they have a rapport in their respective communities. Capitalising on this rapport, our team members work hard to convince and push people to identify and break the viciousness of these myths.

A Mahila Mandal where anemia, PPH and other high risk conditions in pregnant women are being discussed with the help of picture cards.

The second way by which we try to engage with these belief systems is by the way of our community meetings called Mahila Mandals. These monthly meetings are conducted in each village for our pregnant and lactating mothers. We use different elements like games, storytelling and nukkad nataks to attract and start a conversation at village levels with women of different age groups. These are targeted around all girls and women who fall in the reproductive age groups. Mother-in-laws are also included in these meetings owing to the power dynamics in the community. These meetings are facilitated by active women called community counsellors that have volunteered from these villages. Hence, with this behaviour change model IIH aims to empower communities from within.

Finally, since the community engagement models as mentioned above have a greater gestation period, there always are high risk cases that our team has to keep a tab upon. These cases where haemoglobin levels are extremely low, our team even helps with blood donation as the last resort since the sub-division does not have a blood bank facility. Since, anemia is just not a medical condition but has its roots in the prevailing social evils and it takes a while for the community to adopt new, healthier practices, the least that can be done is to have some activism around getting a blood-bank in the region to save mothers. With deepening advocacy with the government, we aim to insulate the system as a short term goal.

*PPH is a condition where the pregnant mother experiences excessive blood loss after delivering her child.

Blog by: Uttara

Cover Picture by: Amrit Vatsa

How Women in Rural Bihar are Saving Maternal Lives in their Community

It was September 2016 when Innovators in Health (IIH) decided to develop a cadre of women from the most vulnerable wards where we implemented a program on Maternal and Newborn Health (MNH). Without any organised agency, these women were motivated to help their fellow women in distress in the community. Their voluntary help was extremely precious when men in these communities who work as migrant labourers were not around and the women had no other social support. A few such community beacons were present in all vulnerable wards, who were ready to accompany a fellow lady when she was in labour at the middle of night, or someone in family was not well and needed emergency health care. These women provided emotional and social support to others in difficult situations. We named this cadre of women as Community Counsellors.

IIH gave these women a platform to learn scientific knowledge and practices, so that they could help their fellow women more effectively and efficiently. These women, despite being illiterate were keen on helping their community with their new knowledge and had eagerness to help the community in moving ahead from the age-old traditional maternal and childcare practices that had chances to become fatal.  Our search for community counsellors in our intervention areas helped us meet a few wonderful women in the community whose stories we planned to document.

Phulia Devi, the emergency lifesaving beacon of her neighbourhood…

45 years old Phulia Devi is married with Biro Paswan of Pagda Panchayat of Dalsinghsarai block in Samastipur district (Bihar) for the last 35 years. The couple comes from among the most vulnerable and economically poor scheduled caste, locally known as “Dusadh/Paswan”. They are illiterate and survived on their earnings as manual labourers. The only piece of land the family has, is their house having a thatched roof.

Husband Biro Paswan worked as a porter at Karnal grain mandi in Haryana since beginning of getting married, as local wages was not sufficient to run family expenditure. He visited home only during key festivals and major social occasions, while he kept supporting the family financially.  At home Phulia lived with her mother-in-law. As a guardian, husband Biro and mother-in-law were very supportive. In subsequent years Phulia and Biro had four children, two sons and two daughters. The sons studied till a few grades in the nearby government school. As they entered adolescent age, they joined their father to work in Karnaal. One daughter has been married, while the youngest is studying in 10th standard.

As IIH started maternal and new-born health (MNH) initiative in her ward in 2016 and started engaging women through Mahila Mandal (community engagement of women in reproductive age), the team learnt about Phulia’s selfless service to the women in her hamlet, especially those in the reproductive age. Around that time IIH started engaging with such selfless women from the intervention catchments through an initiative named “empowering community counsellors”.

IIH engaged Phulia Devi as a community counsellor since 2016 where she helped many lives by timely informing IIH about high-risk mothers and neonates. She also accompanied patients to the public health facilities for emergency healthcare. She accompanied every such women of her hamlet to the health facility, whose male members were in “pardesh” (other states) to earn livelihood, and the women were in dire need of support during pregnancy, labour onset or neonate care.  IIH did not pay any routine honorarium to Phulia or her likes, but only took care of their expenses on transportation and incidentals while helping a community member.

Phulia Devi with a women in her hamlet whom she helped during delivery.

There were dozens of women of her age in the hamlet, but the kind of dedication Phulia had to help fellow women, was rare in the community. For 25-year-old Savitri and her newborn, Phulia acted like a messiah during her pregnancy. Savitri developed labour pains and was bleeding profusely when Phulia, her neighbour took her to the PHC and eventually to the district hospital to ensure she has a safe delivery. Seeing the financial condition of Savitri’s family, she even arranged for nutritious food for the lactating mother. At the outset while it looked that Phulia was doing such an amazing social service due to requisite training and support from IIH, a closer conversation with her brought into picture another reality.

Phulia’s parents were well off as compared with her in-laws. Following traditions of early marriage, they married Phulia in 1980 when she was only 10 years old. Next seven years Phulia lived with her parents, and came to her in-laws for the first time at the age of 17 years in 1987, the year when the region faced the most devastating floods. In her maternal place, Phulia always had social support but she found these completely missing at her in-laws house. It was only her husband and her mother. After a few weeks when floods receded, her husband left to Karnal (Haryana) for work. Facing relative scarcity and lack of social support, Phulia was finding hard to negotiate with the same. She feared that in her husband’s absence if something unexpected happens to her health or of her mother-in-law, there would be no one to help them. Her parents lived around 60 miles away and it was generally unwelcoming to take parents support after marriage.

Phulia realised that the only way she could assure that her neighbours helped her in case of emergency, if she helped them unconditionally in hours of their need. She started attending them in emergency health needs. Initially when her mother-in-law and husband tried discouraging her for helping others by leaving behind her own household chores, Phulia reasoned with them that if any emergency would arise to her in Biro’s absence, how would she expect her neighbours or community to help her out.

Phulia believes that she is more confident and fearless in her approach to help her community due to the peer group learning and counsellor trainings. Initially she had inhibitions while visiting the public health facility and talking to the health providers, now she has much more confidence. She realises that her approach to help her community has empowered other women as well. Phulia hopes that young women and girls in her village are inspired by her and they start initiatives to support one another.

You can watch Phulia’s story here ; video by Databaaz.

Blog by: Manish Kumar