The biggest myth related to breastfeeding is that the mother is solely responsible for breastfeeding the child. Even though challenging, the antenatal phase of pregnancy is probably not the only difficult phase in a mother&#39;s life. To nurture an infant comes with its challenges, and breastfeeding is one of them, especially for an inexperienced mother with no social support.

What are the difficulties faced by women while breastfeeding?

Breastfeeding is a deeply emotional journey for many mothers, a perspective that we often overlook. It&#39;s <a href="https://www.frontiersin.org/articles/10.3389/fped.2020.00199/full">not always</a> a smooth ride; most women encounter challenges during this period, be it physical or emotional.

Fear, sadness, anger, and concern are typical emotional stages a feeding mother experiences. Poor milk production, a <a href="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8710095/">commonly</a> reported problem, often results in a loss of confidence and self-doubt, further reducing breast milk production.

This experience is often different from what one would have expected. <a href="https://bmcwomenshealth.biomedcentral.com/articles/10.1186/s12905-020-00947-1">Prenatal counselling</a> helps in demystifying breastfeeding but does <a href="https://internationalbreastfeedingjournal.biomedcentral.com/articles/10.1186/1746-4358-3-5">not always</a> lead to improved knowledge and a better breastfeeding experience.

Sore nipples, inadequate milk production, breast engorgement and infection of the breasts are some of the common <a href="https://www.nhs.uk/conditions/baby/breastfeeding-and-bottle-feeding/breastfeeding-problems/common-problems/">physical problems</a> associated with breastfeeding. Addressing both physical and mental difficulties is highly important, as these often lead to <a href="https://www.frontiersin.org/articles/10.3389/fped.2020.00199/full">mothers stopping exclusive breastfeeding</a> and beginning formula.

The scandalous formula feeds

The scandalous history of formula feeds is well-known. <a href="https://www.theguardian.com/sustainable-business/nestle-baby-milk-scandal-food-industry-standards">Nestle</a> risked the lives of millions of children for profit. Poor people&#39;s desire to Westernize helped companies get mothers from third-world countries hooked on formula feeds. The company linked formula feeds to the most desirable but unrealistic outcomes. Initially, free samples of this unhealthy and expensive &#39;baby-killer&#39; were distributed.&nbsp;

As it was expensive, poor mothers often diluted it with water before feeding the child. Doing this not only deprives the children of essential nutrients but also puts them at a higher risk of developing infections. This product, which Nestle advertised as being better than breast milk, soon gained popularity but led to the death of millions of children.&nbsp;

Formula-feed companies continue to <a href="https://www.who.int/news/item/28-04-2022-who-reveals-shocking-extent-of-exploitative-formula-milk-marketing">mislead</a> mothers and fill them with self-doubt. They use powerful marketing techniques to reach millions of people and fool them into believing formula feeding is better for their children. As breast milk production involves a <a href="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3298672/">complex neurological pathway</a>, the emotions of fear, concern, and guilt affect it. These emotions further <a href="https://www.jognn.org/article/S0884-2175(15)31026-1/fulltext">reduce milk production</a>, which forms a vicious cycle and pushes mothers toward artificial feeds.&nbsp;

Breastfeeding vs formula feeds

Whether breast milk is better than formula feed has been an age-old discussion. Breast milk is better for the child, which is &#39;nature&#39;s perfect food&#39;. Breastfeeding is beneficial not only for the child but also for the mother.&nbsp;

It protects the child from diseases like <a href="https://diabetesjournals.org/care/article/40/7/920/30107/Infant-Feeding-and-Risk-of-Type-1-Diabetes-in-Two">type 1 diabetes</a>, <a href="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3508512/">ear infections, obesity</a>, <a href="https://www.webmd.com/parenting/baby/news/20040513/breastfeeding-cuts-adult-cholesterol">high cholesterol</a>, <a href="https://bmcmedicine.biomedcentral.com/articles/10.1186/s12916-021-01950-5">cancer</a>(leukaemia, lymphoma), and diarrhoea. It is free and easily accessible and <a href="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4810341/#:~:text=Breastfeeding%20improves%20cognitive%20development%20and,infancy%20to%20adolescence%20(10).">makes your child smarter</a> by promoting brain development (the secret of &lsquo;Sharma ji ka beta&rsquo;). It also <a href="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3508512/">protects</a> the mother from breast and ovarian cancer, heart disease, and diabetes.

Some mothers, however, choose formula feed as it is more convenient than breast milk. Formula feeding allows time flexibility and enables the partner to feed the child. But is formula feeding healthy for the child?

Use of formula feeds in early infancy has a 2.5 times higher risk of making the child <a href="https://www.frontiersin.org/articles/10.3389/fpubh.2020.492596/full">unhealthy and malnourished</a>. An early switch to formula feeding increases a child&#39;s risk of developing severe health conditions like <a href="https://www.nature.com/articles/pr2012125">necrotizing enterocolitis</a>(a life-threatening disease of the intestines). It is also associated with a higher risk of developing chronic conditions like diabetes and asthma.

Investment in breastfeeding is significantly low in India. In India, only 50% of newborns get breast milk within the first hour of birth, and only 55% get exclusive breastfeeding for the first six months of life.&nbsp;

Formula feeds are not only expensive but also result in <a href="https://pubmed.ncbi.nlm.nih.gov/19759351/">more kids getting hospitalized</a> due to related complications. Poor breastfeeding practices lead to child deaths and cognitive losses, which result in an <a href="https://timesofindia.indiatimes.com/india/india-ranks-low-on-breastfeeding-practices-study/articleshow/59890663.cms">economic loss</a> of $14 billion per year!! India currently spends only Rs 10 per child to maintain adherence to good breastfeeding practices. Promoting good breastfeeding practices would thus result in direct and indirect economic gains for the country.

Formula feed, even though known to be worse than breast milk, is indicated in <a href="https://www.ncbi.nlm.nih.gov/books/NBK148964/">certain health conditions</a> related to the mother and the child. Infants suffering from specific genetic disorders (like galactosemia and MSUD) can not tolerate breast milk and, therefore, require specific artificial feeds. Infants with low birth weight require additional nutrition besides breast milk, given through formula feeds. In certain maternal conditions like active herpes infection, consumption of <a href="https://www.cdc.gov/breastfeeding/breastfeeding-special-circumstances/vaccinations-medications-drugs/index.html">certain drugs</a> or severe illness that prevents the mother from breastfeeding, one can give formula feeds.

Setting up breast milk banks could be argued to be a possible solution. However, ethical malpractice becomes a cause for concern. More than 80 non-profit breast milk banks are in the country, but the recently approved <a href="https://timesofindia.indiatimes.com/home/sunday-times/sale-of-breast-milk-raises-eyebrows/articleshow/92623732.cms">sale of breast milk for profit</a> has raised many eyebrows. It opens up a window for exploitation and could lead to a <a href="https://www.tandfonline.com/doi/full/10.1080/09692290.2020.1864757">scandalous blast from the past</a>.

Breastfeeding in public: a challenge for all mothers

One advantage of formula feeding is that one can feed babies in public. According to a <a href="https://www.thehindu.com/sci-tech/health/only-6-mothers-in-india-are-okay-with-public-breastfeeding-places-says-survey/article29037650.ece#:~:text=Breastfeeding%20in%20public%20is%20still,India%20survey%20by%20Momspresso.com">survey</a> in India, only 6% of mothers could find designated public areas to nurse their children. Due to the lack of designated places, 81% of the surveyed women felt uncomfortable breastfeeding in public, the most significant barriers being hygiene and awkward stares.

Social stigma is a pervasive issue, not just in India but globally. Women <a href="https://www.vogue.in/wellness/content/breastfeeding-in-public-world-breastfeeding-week#:~:text=A%202014%20study%20conducted%20by,they%20may%20be%20subjected%20to%E2%80%9D">from all corners of the world</a> have expressed feelings of embarrassment when breastfeeding in public, often feeling judged by others. These adverse experiences are mainly due to the sexualization of breasts in our society, overshadowing their primary role as a child&#39;s source of nourishment.&nbsp;

Even though many countries have addressed this issue and made attempts to reduce the social stigma associated with breastfeeding, a lot of work still needs to be done, especially in India. A breastfeeding room, which should be part of the construction plan of public places and buildings, is not currently included in the National Building Code of India (NBC) 2016, a comprehensive building code.&nbsp;

Impact of social support on breastfeeding

<a href="https://journals.plos.org/plosone/article?id=10.1371/journal.pone.0249538">Postpartum depression decreases milk production</a> and affects the nourishment of the child. Due to cultural and personal inexperience, mothers usually find themselves alone in such scenarios. Studies have shown that social support not only helps in fighting depression but also <a href="https://journals.plos.org/plosone/article?id=10.1371/journal.pone.0249538">improve</a>s breastfeeding practices and even breastmilk production. A <a href="https://cdn1.sph.harvard.edu/wp-content/uploads/sites/112/2020/11/IntJMedHealthDev25257-5400332_150003.pdf">study showed</a> that support from the mother, father and husband was associated with early initiation of breastfeeding and prevented pre-lacteal feeds(any food except mother&#39;s milk provided to a newborn before initiating breastfeeding, a practice harmful to the baby).

A study done in Thailand found that training mothers and grandmothers helped improve breastfeeding practices. Informational, instrumental, and emotional support is necessary to promote good breastfeeding practices. Breastfeeding knowledge still needs to improve in our community, with only <a href="http://jmscr.igmpublication.org/home/index.php/archive/155-volume-06-issue-10-october-2018/6038-knowledge-attitude-practices-and-role-of-social-support-in-breastfeeding-among-women-a-cross-sectional-study">half the women</a> aware of good breastfeeding practices. This study highlights the supportive role of the community in breastfeeding. Contrary to belief, breastfeeding is not a mother&#39;s responsibility alone.

Is traditional support better than online support?

The COVID pandemic has significantly increased the acceptability of remotely provided care, even breastfeeding support. Some consider online support <a href="https://pubmed.ncbi.nlm.nih.gov/31299699/">more accessible</a> than real-life support. Not only can it be accessed at convenient times, but it also helps maintain anonymity for those affected by the social stigma. But does online support have the same impact as traditional in-person support?

A <a href="https://onlinelibrary.wiley.com/doi/full/10.1111/mcn.13296">study</a> showed that online support groups affect breastfeeding practices similarly to traditional support. It is better than no support at all. Therefore, one should opt for online support when no other option exists. This study, however, did not compare the impact of online vs. traditional support on women&#39;s mental health and satisfaction.

To conclude, poor breastfeeding practices are a substantial public health problem in India. We need to enable breastfeeding by empowering women with knowledge and social support. As a supportive community, we can improve the acceptance of healthy breastfeeding practices, leading India to a healthier tomorrow.

<hr />
Edited by Christianez Ratna Kiruba

Image by Janvi Bokoliya

An article talking about difficulties faced by women in India while breastfeeding and how to overcome them.

breastfeeding troubles

Step Up For Breastfeeding: Educate And Support

India is NOT &ldquo;resource-limited&rdquo; if there are people in the country who can spend 5000 crores over a few days and still be left with 99.5% of their wealth. In a country where 60% of the rural population lives on less than 35 rupees per day and 10% lives below 15 rupees per day, everyone should ideally feel frustrated after this outrageous display of wealth.

For those like me who can not even imagine 5000 crore rupees, here is a short list of things that could have been possible to do using that money:&nbsp;

<ol>
	<li>Run AIIMS Delhi for 1 year, PGI Chandigarh for 2.5 years, Safdarjung Hospital for 2.7 years, JIPMER for 3.5 years, NIMHANS for 6 years, and Kalawati Saran Children&rsquo;s Hospital Delhi for 28 years.&nbsp; 
	(Source of annual allocated budget for each hospital: <a href="https://www.indiabudget.gov.in/doc/eb/sbe46.pdf">Health Budget 2024-25</a>)</li>
	<li>Deliver food baskets daily to the homes of nearly 70 lakh tuberculosis patients for 6 months (duration of drug-sensitive TB treatment) and make TB elimination from India a possible reality.&nbsp; 
	(Cost of food basket containing 1200 kcal, 52 grams of protein per day with micronutrients = Rs 40/day. Source: <a href="https://www.thelancet.com/journals/langlo/article/PIIS2214-109X(23)00324-8/fulltext">RATIONS trial</a>)</li>
	<li>Fund Rajasthan&rsquo;s 2023-24 annual health budget for the Medical and Health Department. 
	(Annual budget for 2023-24 = Rs 5186 crores. Source: <a href="https://accountabilityindia.in/wp-content/uploads/2023/02/Rajasthan-Budget-2023-24.pdf">Rajasthan budget 2023-34</a>)</li>
	<li>Conduct Census 2021 and update the National Population Registry which has been delayed due to &ldquo;lack of funds&rdquo;. 
	(Only 1227.80 crores have been allotted in the 2024-25 interim budget to conduct the Census. Source: <a href="https://economictimes.indiatimes.com/news/economy/policy/census-npr-unlikely-in-2024-too-as-only-rs-1277-cr-allocated-in-budget/articleshow/107328914.cms?from=mdr">Times of India</a>)&nbsp;</li>
	<li>Resolve debt of 6.75 lakh households of farmers. Debt continues to be the leading cause of farmer suicides in India. In 2022, it was estimated that one farmer died by suicide every hour in India.&nbsp; 
	(Average outstanding loan per household at Rs 74,121 in 2018. Source: <a href="https://www.pib.gov.in/PressReleasePage.aspx?PRID=1753856">NSO survey 2018</a>)</li>
	<li>Fund the education budget of Arunachal Pradesh for 2 years. 
	(Source: <a href="https://ecostatistics.arunachal.gov.in/State%20Publications/Budget%20in%20Brief-%202023-2024.pdf">Arunachal Pradesh Budget 2023-24</a>)</li>
	<li>Run the Mission Shakti scheme&mdash;aimed at women&rsquo;s safety and empowerment&mdash; for the next 3 years. 
	(Budget for 2024-25: Rs 1471 crores. Source: <a href="https://www.livemint.com/budget/news/budget-2024-saksham-anganwadi-and-poshan-2-0-scheme-gets-21-200-crore-11706779627070.html">Mint</a>)</li>
	<li>Increase the salary of each ASHA in the country by Rs 4000 per month for a year. Currently, the ASHAs are paid roughly in the range of <a href="https://timesofindia.indiatimes.com/city/delhi/asha-workers-on-stir-over-working-conditions-pay/articleshow/103456079.cms">Rs 6000 to Rs 11000 per month</a>.&nbsp; 
	(Source for the number of ASHAs in India: <a href="https://nhsrcindia.org/asha-map-table">NHSRC</a>)</li>
	<li>Provide the 14 lakh severely malnourished children in India with three meals per day (costing Rs 50 per day) for two years. Currently, under the <a href="https://wcd.nic.in/sites/default/files/Final%20Saksham%20Guidelines%20with%20covering%20letter%20%281%29_0.pdf">POSHAN 2.0</a>, only Rs 12 is allotted for food per day per severely malnourished child. 
	(Source of number of severely malnourished children in India: <a href="https://www.hindustantimes.com/india-news/over-14-lakh-children-severely-malnourished-in-india-govt-101680100159342.html">Hindustan Times</a>)</li>
	<li>Build three more Ram mandirs. (Special fact for Bhakts) 
	(Cost of building Ram mandir: 1800 crores. Source: <a href="https://www.thehindubusinessline.com/data-stories/data-focus/ayodhya-ram-mandir-the-cost-and-the-funding/article67748796.ece">The Hindu BL</a>)</li>
</ol>

Just a 2% wealth tax on India&rsquo;s 167 billionaires will raise <a href="https://www.businesstoday.in/union-budget/story/a-2-wealth-tax-would-raise-whats-pms-position-on-billionaire-tax-asks-jairam-ramesh-ahead-of-budget-436907-2024-07-12">1.5 lakh crores</a> every year. That is almost double the amount that India currently spends on health every year. A lot of you will say, &ldquo;Why do you care how anyone spends their money?&rdquo; Well if they <a href="https://www.ndtvprofit.com/business/mukesh-ambani-draws-nil-salary-for-second-year-in-row-3235105">pay taxes</a> like everyone else does, and adequately pay their employees without exploiting them or their consumers, I do not have a problem with how they spend their money. But till their money reeks of <a href="https://economictimes.indiatimes.com/industry/energy/oil-gas/delhi-hc-seeks-response-from-ril-on-govt-appeal-accusing-co-of-committing-fraud-of-over-1-7bn/videoshow/103672225.cms?from=mdr">corruption</a> and <a href="https://www.adaniwatch.org/adani_s_pelma_coal_projects_displace_and_impoverish_tribal_people#:~:text=A%20nearby%20coal%2Dpower%20station,consequences%20of%20this%20polluting%20industry.">exploitation</a> while millions are oppressed and live a life of suffering, I will care.

Ask yourself, how much tax did you pay in the last financial year? After paying all the taxes - direct and indirect - are you sure you will get good quality affordable health care if you were to face a serious illness? Why are the rich not getting taxed in India?

It&rsquo;s time to break the silence and ask questions to those in power.

In India a farmer dies of suicide every hour due to debt.

What can 5000 crore rupees do?

Countless meetings have happened in famous destinations across the world. Countless goals have been made. Ambitious targets have been set. Health for all has been promised. But how can we achieve health without making any efforts to tackle the hate that surrounds us?

Hate has become more and more prominent over the years. Certain groups have borne the brunt in which religion, skin color, and caste have been the most crucial deciding factors. Recent events around the globe have made one thing obvious - keeping people healthy is not possible if hate is not addressed first.&nbsp;&nbsp;

Enough evidence exists to show that skin color, caste, gender, ethnicity, and religion dictate not just a person&rsquo;s access to healthcare but also the quality of healthcare one receives. These factors ultimately decide who gets to live and who &lsquo;deserves&rsquo; to die. But what if these factors become the reason why one person falls sick or suffers in the first place?&nbsp;

Recent wars around the world have proved that the value of life is different from religion to religion, country to country, and color to color. International help poured in when Russia invaded Ukraine. Leaders from all over the world visited the war-torn country putting their personal safety at risk to show their support for the impacted nation. The United Nations organized multiple meetings to pass resolutions and restrict relations with Russia. Various other (failed) attempts have been made to stop the war which started on 24th February 2022 and is still on.

However, the response has been (un)surprisingly different in the Gaza crisis. The United States of America, the land of Avengers and Justice League,&nbsp;<a href="https://news.un.org/en/story/2023/10/1142507">vetoed</a> a resolution for a HUMANITARIAN PAUSE (!!) to deliver life-saving aid to millions in Gaza. Yes, a PAUSE, it wasn&rsquo;t even a resolution to end the war. The United Kingdom and Russia decided to abstain. Various other moves have been vetoed since then. Hospitals have been bombed, and children have been murdered but global leaders have held their silence and ignored all war crimes.

Unfortunately, we don&rsquo;t have to look beyond India in search of hate. Countless events over the past decade have highlighted the toxicity of hate and how it is destroying the social fabric of the country. With all this in mind, all the research, and scientific advancements seem pointless to me. What is the point of all that we do if hate still wins and continues to multiply itself? One does not have to be in Palestine or Ukraine or Manipur to be affected by this hate. It is all around us and thanks to social media it is closer than ever.&nbsp;

As Manipur still burns, I wonder who all are covered under &lsquo;ALL&rsquo; when they say &lsquo;Health for all&rsquo;. Is there a tiny asterixis above &lsquo;all&rsquo; that I have failed to notice?&nbsp;

Good health can not exist without abolishing hate.

Health For All – A Global Lie

&ldquo;I have generalized itching,&rdquo; said Kamlesh (name changed), a 35-year-old lady from Delhi. &ldquo;I am not able to sleep all night. It itches a lot. I got treatment from here last time. The itching improved slightly but since February it has become worse.&rdquo;

Being the body mechanic that I am expected to be, I asked her the regular questions - is there a lesion where it itches? Are the axilla and groin affected? Does it worsen in summer? She answered, &ldquo;Yes!&rdquo; to all the questions. This is obviously Tinea (a fungal infection), I thought to myself. But why should she have the tinea infection? She had no usual risk factors- she was not a diabetic, and said she maintained proper hygiene. She was overweight but not morbidly obese.&nbsp;

Her next complaint pointed me in another direction. She added that she also feels tired all the time, and gets breathless when she walks some distance. On further queries, she told me that she also had low bleeding during her menstrual cycles. &ldquo;Do you feel sad without any reason?&rdquo; I asked. I could see the pain in her eyes as she quietly nodded. &ldquo;ANEMIA!&rdquo; my brain exclaimed. Anemia can be associated with recurrent infections, low bleeding during menstrual cycles, and low mood. I was nearing the answer to my favorite question - why should somebody have a disease?

I put my body-mechanic brain to work and asked more questions - do you have a craving for mud or ice? Do you get a tingling sensation in your legs and the urge to keep moving them? She answered yes to both questions. I had the eureka moment - &ldquo;IRON DEFICIENCY ANEMIA!&rdquo;&nbsp;&nbsp;

The picture was nearing completion - or so I thought. She had iron deficiency, which led to anemia, impacting her immunity and thus causing a recurrent fungal infection which was not resolving- since nobody was treating the underlying cause of iron deficiency. I gave myself an imaginary pat on the back and then returned to ask my last set of questions to figure out why she was having iron deficiency.

&ldquo;How many children do you have?&rdquo; I asked next. Having seen a lot of mothers who delivered multiple children at home without antenatal care (Yes! Even now!) with anemia, this is usually my first question.

&ldquo;I am not married.&rdquo;

She had been looking quite distressed all this while. I assumed it was due to the itch and the disturbed sleep that it was causing. I put my body-mechanic hat down and took a different approach to treating her.&nbsp;

&ldquo;My mother is bedbound. She is 65 years old and has paralysis,&rdquo; she said. &ldquo;Her weight is more than 100 kg and she has cataracts in both eyes. She can not even see the food she eats. I have to do everything for her, right from bathing and feeding her to cleaning her when she soils the bed. I have to be next to her all day so she doesn&rsquo;t fall off the bed. Today I asked my brother to stay with her for a while so I could come to get medicine for myself. I feel very tired.&rdquo; I sat quietly as she tried to hide her tears.&nbsp;

&ldquo;I want to work and get a job but I can not leave my mother alone. I am dependent on my brother for everything. My sister-in-law wants to move out and live separately.&rdquo; She let her guard down and started to cry. I guess she felt she could trust me now. How long she had contained her emotions, I wondered.

&ldquo;I was married at 16 years of age. My husband was an unemployed alcoholic. I divorced him after 6 months of marriage. My mother got a paralysis attack because of the shock of my marriage ending. I have been fighting the court case of the divorce ever since. He (ex-husband) passed away this February.&rdquo;&nbsp;

The iron deficiency anemia was a possible explanation for her illness. But the mental, physical, and social stress she was going through was staring me in the face. Psychological stress makes a person <a href="https://www.sciencedirect.com/science/article/pii/S0889159123003768#:~:text=Stress%20can%20also%20affect%20the,dermatitis%2C%20acne%2C%20and%20urticaria.">more prone</a> to skin diseases. The stress of her personal life and the caregiver fatigue she was going through were the root causes of her illness. There is <a href="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4804270/">ample evidence</a> to show that most caregivers are women and more women sacrifice their needs and wants to take care of others. Women are also known to tolerate illnesses till they become unbearable. Couple these two and one will find why Kamlesh&rsquo;s disease was not under control.&nbsp;

She was not able to get proper treatment for the disease and was struggling with the fatigue and stress of taking care of a bed-bound mother alone with no social support. &ldquo;Who takes care of you?&rdquo; I asked her, partly knowing her answer already.&nbsp;

I put my body mechanic hat back on, but only partially this time. Could I possibly cure her? I repeated the words of my mentor in my head - &ldquo;There is a reason it is called healthCARE.&rdquo;&nbsp; As doctors, are we blinded by our quest to search for a cure for our patient&rsquo;s diseases? How often do we see the person who is suffering and not the &ldquo;case&rdquo; of the disease? We might understand our diseases really well but do we make the effort to understand the person suffering from them?&nbsp;

As early as our undergraduate days, medical practitioners are often advised to practice clinical detachment, to look at our patients and their complaints through a sterilized perspective. It helps us stay objective and professional in the face of abject human suffering, which is often beyond our control. Suffering has several dimensions, and all roads- poverty, sexism, casteism, lack of access- lead back to health. However, can we really cure any disease without alleviating the several precipitating factors, which lurk beyond the reach of our OPDs and wards? In the absence of a complete cure, what is stopping us from at least caring?

Besides writing the most evidence-backed prescription for her, I also prescribed her my phone number. Was I making a mistake? After all, doctors are not supposed to emotionally connect with their patients. But the smile she had on her face while leaving the clinic said otherwise.

Edited by Radhikaa Sharma.

Image by Janvi Bokoliya.

&nbsp;

Is the role of a doctor only to cure diseases?

How To Treat A Disease That Has No Cure

Around <a href="https://www.prisonstudies.org/sites/default/files/resources/downloads/world_prison_population_list_13th_edition.pdf">11.5 million</a> people were in custody worldwide as of 31st December 2021 with India having 488,511&nbsp; <a href="https://www.prisonstudies.org/country/india">people in prison</a>. This included people who were awaiting trial and had not been proven guilty yet. In India, 35 of every 1 lakh people were in jail in 2021.&nbsp;

There are 1306 prisons in India with an occupancy ratio of 118% which means on average a prison in India has 18% extra prisoners than it can accommodate. This, however, varied from <a href="https://www.indiatoday.in/diu/story/coronavirus-prisoners-india-jails-inmates-data-1658001-2020-03-20">state to state</a>. Uttar Pradesh and Delhi had prison occupancy of 174% and 154%, respectively. Only 18 states and union territories had fewer inmates than they could accommodate. But, how does an overpopulated prison threaten public health?

Prisons as disease epicenters

In 1862, an illness rapidly spread among the inmates of the Agra Central Prison. Dr C Plank, the administrator of the prison, identified it as a cholera outbreak but was helpless despite his best efforts as the treatment available during those days for cholera was ineffective. He tried &lsquo;isolating&rsquo; prisoners in a crowded prison, and restricting interaction between different prison work gangs as it was believed back then that cholera spread through the air.

Fifteen years later, in 1877, another cholera outbreak in a crowded <a href="https://histecon.fas.harvard.edu/climate-loss/akyab/index.html">prison in Myanmar</a> (then, Burma), killed nearly 80 inmates. Lack of adequate space and clean drinking water made cholera lethal which led to a fourfold increase in deaths as compared to the previous year. 
 
India under the Britishers saw many more deaths due to disease outbreaks in prisons. Instead of reforming public health and prison standards, the Britishers blamed the prisoners&rsquo; habits for their increased risk of disease and death. Prisoners, however, were used as study subjects to understand cholera better.&nbsp;

&lsquo;The inmates of a large prison, such as the one under notice, are so placed as to offer peculiar advantages in the study of epidemic disease,&rsquo; wrote&nbsp; Dr C Plank, Administrator of the Agra Central Prison in his report.

Nearly 150 years later, in 2020, Uttar Pradesh saw a steep rise in COVID-19 cases. The prison which was running at nearly double its capacity was an ideal place for a disease like COVID to spread. Cases and deaths were rising and so the Supreme Court of India directed the state government to release prisoners awaiting trial. Unsuccessful efforts from the government however led to even <a href="https://www.himalmag.com/from-cholera-to-coronavirus-the-pandemic-issue-2020/">further overcrowding</a> of the prison. During the second wave in 2021, nearly <a href="https://www.humanrightsinitiative.org/content/stateut-wise-prisons-response-to-covid-19-pandemic-in-india">30,000 inmates</a> and prison staff tested positive and reportedly 25 succumbed to the illness.&nbsp;

COVID-19-related increased deaths in prisons were noticed <a href="https://journals.plos.org/plosone/article?id=10.1371/journal.pone.0268866">worldwide</a> and not just in India. With prison not being looked at as a place for reformation but as punishment, is it justified to strip off the rights of people when they are imprisoned?&nbsp;&nbsp;

Do prisoners have the right to health?

The Supreme Court of India in its landmark judgment in Parmanand Katara vs Union of India (1989) and others ruled that the state has an obligation to preserve life whether the person is innocent or a criminal liable to punishment under the law.

&lsquo;Social laws do not contemplate death by negligence to tantamount to legal punishment.&rsquo; - Supreme Court Judgment in 1989.

The Prisons Act, 1984, gives each prisoner in India the Right to Health. It is the duty of the jailer to get the prisoner medical attention without delay if any prisoner desires it, for physical or mental health issues, and effectively follow the instructions of the medical personnel. The law also directs that each prison should have a hospital or a similar facility to take care of sick inmates.

Role of prison health in public health

It is important to maintain the health of the prisoners mainly for two reasons. Firstly, the prison population is at high risk of contracting serious infections like tuberculosis (TB), HIV, and hepatitis, to name a few. Sooner or later, when these prisoners are released they become a threat to public health as they can spread these untreated diseases and increase the disease burden in the community. Thus, treating such diseases early and effectively in prison is imperative.

Secondly, prison health plays an important role in social justice. As most prisoners come from underprivileged backgrounds, prison health helps in reducing health inequalities to some extent.&nbsp;

Indian prisons have been criticized <a href="https://bioethics.hms.harvard.edu/journal/prisoner-rights">globally</a>. From unhygienic conditions to barely edible food, prisoners are at risk of a plethora of conditions, ranging from communicable diseases to mental health disorders. In a country that is fighting a constant battle against tuberculosis, overcrowded and undernourished prisoners living in unhygienic conditions are at the highest risk of developing the disease and going undiagnosed and untreated. A <a href="https://www.ijidonline.com/article/S1201-9712(17)30038-3/fulltext">study</a> done in India in 2017 found that 19% of the inmates screened had TB symptoms and nearly 8% were diagnosed with TB on microscopy.

Should we decongest our prisons?

As of 2021, three in four prisoners were under trial or awaiting trial, meaning that only one-fourth of the entire Indian prison population had been proven guilty of a punishable offense. Most of these accused inmates, who were often just waiting for years for a hearing date, were <a href="https://www.indiatoday.in/india/story/undertrial-prisoners-indian-jails-ncrb-report-prison-statistics-supreme-court-1618588-2019-11-15">found</a> to be young, barely literate, accused of minor violations, and too poor to afford the bail fee.&nbsp;

Prisoners can&rsquo;t fend for themselves and their health is the responsibility of the state. Considering the state of public health and the rate at which it is improving in the country, expecting prison health to improve anytime soon is impractical. With a majority of prisons overcrowded with possibly innocent people, it is important either to speed up the legal process or release the ones who were imprisoned for minor violations.&nbsp;

The past and the present have taught us the same lesson, prisoners&rsquo; health is a major component of public health. It will be impossible to control any pandemic if prison health is not improved, not just in India but worldwide. Pandemics are said to shape the human race. I hope the recent pandemic leads us to a better and healthier future.

Edited by Radhikaa&nbsp;Sharma.

This article was first published in August 2022.

Photo by <a href="https://unsplash.com/@yejinghan?utm_content=creditCopyText&amp;utm_medium=referral&amp;utm_source=unsplash">Ye Jinghan</a> on <a href="https://unsplash.com/photos/a-shadow-of-a-person-behind-bars-in-a-jail-cell-T5roX1jajzU?utm_content=creditCopyText&amp;utm_medium=referral&amp;utm_source=unsplash">Unsplash</a>

What is the status of health in a prison in India and why is it important to talk about it?

It Is Time To Decongest Our Prisons - A Message From The Past And Present

My day at the outpatient clinic was interrupted by a sudden change of plans. &ldquo;Doctor, you will have to go for the Viksit Bharat Sankalp Yatra,&rdquo; said the medical officer in charge of the center where I was posted. Leaving a line of patients waiting to see me, I picked up a BP apparatus and got in a rickshaw to reach the location of the health camp.&nbsp;

Arrangements were made for our medical team to examine patients. People from the post office were also present there to make Aadhar cards and an official from the Ujjwala Yojana (a scheme which provides free cooking gas cylinders to below poverty line families) was also there to facilitate service provision. The Viksit Bharat Sankalp Yatra aims to reach out to as many people as possible and enroll the eligible ones into the government schemes that have been included in this yatra. The schemes have been <a href="https://viksitbharatsankalp.gov.in/flagship">listed</a> for urban, rural, and tribal populations and active measures are being taken to reach saturation of coverage for these schemes.

The responsibility of the medical team was to screen people for diabetes and hypertension, identify people with a prolonged cough and refer them to get tested for tuberculosis, and provide primary care to others coming to the camp. The camp started with a photo session. Photos with the banner were clicked from multiple angles. Finally, after an hour of waiting, a person came to the camp seeking care.&nbsp;

&ldquo;My back and legs hurt. They have been hurting for more than 6 months now,&rdquo; told Sanjay, a 60-year-old gentleman who sold eggs on the street for a living. A thorough history and examination did not reveal any physical illness.&nbsp;

I was taught that people visit a health center only for two reasons - either their pain is unbearable or their anxiety and stress. Having made sure that there was no physical cause for pain and that it was not really unbearable, I moved on to evaluate for the other reason that I was told often brings people to a healthcare center.

&ldquo;How is everything at home?&rdquo; I asked Sanjay.&nbsp;

&ldquo;I have been struggling to earn enough money to make ends meet. My son moved out with his wife. My wife and I now live with our younger son who tries to make ends meet by doing menial jobs.&rdquo; The reason for his feeling unwell suddenly became evident. It wasn&rsquo;t a disease I had a cure for. Psychological stress and depression often present as physical symptoms, the most common one being pain. I prescribed some pain relief to him along with some other drugs knowing that I wasn&rsquo;t treating the root cause of the problem. Soon the nodal officer of the area arrived and we rose to take another set of photographs.

Two young men walked in shortly after I had finished posing with the banner. &ldquo;My chest burns,&rdquo; said Md Ali, a 30-year-old papaya seller. When I asked him if he ate too much spicy food, he told me that most of his meals consisted of the papaya he sold. That is all that he could afford. After ruling out a heart problem clinically and all external causes of heartburn I moved on to my next question - &ldquo;How is everything at home?&rdquo; &ldquo;I have three kids to take care of. My monthly house rent is 5000 rupees. I start my work at 8 am and finish at 11 pm. I am still not able to make ends meet.&rdquo;&nbsp;

It is well known that psychological stress can induce gastritis and gastric reflux. I prescribed antacids to him knowing that his symptoms would recur as soon as he stopped taking the medication. Did I just add to his financial woes by prescribing a tablet that will make him feel better only while he is on it?&nbsp;

Before I could give more thought to the social evils that made people sick, we were asked to pose for the next set of pictures, this time with a local politician. As we all stood in a row to take the sankalp (pledge), I wondered if the words of the pledge really meant anything to anyone.&nbsp;

After ensuring that the moment had been fully captured in at least five cameras from five different angles, we resumed our work.

I saw Ali&rsquo;s friend next. Prem, a 35-year-old vendor. &ldquo;He is like my brother. We work all day together,&rdquo; said Prem while looking at Ali, smiling. I smiled back at them, feeling like I had time-traveled back to the India I grew up in.&nbsp; Prem complained of pain in his entire body, tiredness, and increased sensitivity to spicy food. I noticed his stained teeth and asked him to pull out the tobacco pouches from his pocket. I was still looking for a reason behind his entire body aching. My pet question this time received an unexpected response. Without saying a word, Prem burst into tears.

&ldquo;My son passed away 6 months ago. He was 10 years old. He had a high fever and all hospitals were full. He died before he could receive treatment,&rdquo; said Prem who was now being consoled by his friend Ali. &ldquo;My son used to come every morning with me and help me set up the stall. He had started supporting my work. He is gone.&rdquo;

The diagnosis was clear. The treatment, however, was not easy. I counseled him to quit tobacco as his mouth was showing very early signs of oral cancer. Ali assured me that he would make sure Prem quit tobacco. Understanding the harmful effects of the legal revenue-generating poison, Prem handed his tobacco pouches to Ali and asked him to discard them.&nbsp;

Prem then rushed home to bring his wife to the health camp. She had been suffering from psoriasis, a skin disease, and had tried all possible treatment options. Her disease had flared up over the past few months. &ldquo;He comes home and fights with me. With the little money he gives me I have to run the house and raise our younger son,&rdquo; said Rekha as tears rolled down her face.&nbsp;

What played a bigger role in the flare-up of her disease, winter, or the emotional stress, I was not sure. With a feeling of helplessness, I prescribed her some tablets for symptomatic relief.&nbsp;

As we started packing up our bags to leave, the medical officer in charge of the camp arrived. We took the final set of pictures, this time being extra careful to not include the inebriated man, who had passed out on a chair in the camp, in the frame.

Even though the above-mentioned people presented with different complaints to the camp, they were all suffering from a common disease - poverty. Of course, there is no quick solution to the underlying troubles these people faced every single day. They may benefit from government schemes and subsidies, but how far do these schemes go? How do we combat increasing unemployment, lack of welfare schemes for the elderly, and a hundred other social injustices that push people into sickness and ultimately extreme poverty, forming a vicious cycle?

The Viksit Bharat Sankalp Yatra website mentions that 19.5 crore (195 million) people have participated in the drive so far. How many have been left viksit (developed) after this yatra (drive)? Will taking a pledge and countless pictures be enough to solve all the problems of the people in this country?&nbsp;

At the risk of sounding cynical, this yatra feels worse than a stop-gap bandaid on a gaping wound of unmet targets. How much will it really help in the absence of real solutions for real-life problems? While the intention of the drive might be to do some good, our leaders need to ponder over and find solutions to more basic questions surrounding livelihood, poverty, and healthcare to make this country truly viksit.

&nbsp;

This is the first article in a series that will critically look at the Vikasit Bharat Sankalp Yatra.

Edited by Radhikaa Sharma.

India has witnessed multiple yatras with political intentions over the past months. How is Viksit Bharat Sankalp Yatra different?

Viksit Bharat Sankalp Yatra

Will Yatras Solve India’s Problems?

A <a href="https://apps.who.int/iris/rest/bitstreams/1415591/retrieve">report</a> by the World Health Organization estimated that 55 million (5.5 crore) Indians fall below the poverty line every year due to health expenditure. It is safe to assume that the private healthcare provision plays a significant role in this. But will providing entirely government-funded healthcare solve this problem? Will converting all hospitals to government hospitals make seeking healthcare free?

Over the past few days interacting with a lot of patients at a tertiary care public hospital in Delhi has made me realize how financially challenging seeking healthcare is for the majority. How often have you heard people say, &ldquo;If they can not afford private care they should visit a government hospital where treatment is free. Nobody is forcing them to go to a private hospital to seek care&rdquo;? Let&rsquo;s keep aside the argument around the waiting times, systemic violence, and quality of care provided in government and private hospitals, and only try to answer one question - is seeking healthcare in government hospitals really free?

&ldquo;I had to borrow 100 rupees from my neighbor today to come for my appointment,&rdquo; said Mr Ramesh (name changed), a 45-year-old cab driver receiving radiation therapy for oral cancer. &ldquo;I earn 200-300 rupees per day. Due to my cancer treatment, I haven&rsquo;t been able to work regularly for the past few months. I am the sole earner of the family and I have two kids. I live 25km away and there are days when I do not have money to even buy the bus ticket,&rdquo; Ramesh said, as he broke down into tears.&nbsp;

This is known as out-of-pocket expenditure (OOPE) - that is, the money people spend from their pocket to seek health care. When spent directly on seeking healthcare it is known as direct OOPE. Direct OOPE can be either due to medical expenses like doctor&rsquo;s consultation fees, and the cost of drugs and medical procedures or non-medical expenses like the cost of travel, accommodation, and food for people relocating to larger cities for treatment.&nbsp; When the source of income or productive hours are lost due to absence from work for treatment, it is known as indirect OOPE. As healthcare providers, we often think of expenditure on health as the money spent on direct medical care. Since this is free in government hospitals, it is easy to assume that seeking healthcare is free in these hospitals.

However, direct non-medical expenses - money spent on travel, accommodation, and food - and indirect expenses - loss of day&rsquo;s wages or productive hours due to leave from work - contribute significantly to the financial burden, which is often neglected. Therefore, the farther the hospital is from the person&rsquo;s house, the more the out-of-pocket expenditure to seek healthcare, even if the drugs and consultation fees are free. As treatment for cancer is mostly localized to major cities in India, cancer patients have to spend large amounts to seek care, even in government hospitals.

Even though tertiary care government hospitals are often equipped with state-of-the-art laboratories, patients still have to get investigations done from private laboratories. &ldquo;The blood collection time is 9 am to 11 am and it takes 1 week to get the report. We therefore advise (cancer) patients to get tests done outside to avoid delays in treatment,&rdquo; told a healthcare worker from a leading tertiary public health center in north India. This, however, is not feasible for a majority of the patients seeking treatment in government facilities.&nbsp;

Mr Mohan (name changed), a 60-year-old who traveled nearly 400 km to seek care, said, &ldquo;I manage to earn only Rs 1500 per month. I am living in a temple here. I can not afford to get these tests done outside.&rdquo; He looked distressed as he was worried that his cancer would progress if he delayed the tests. However, he was helpless. According to a healthcare worker in the same facility, the tests cost &ldquo;only 300 rupees&rdquo; in a private laboratory outside. However, the fact that the supposedly small amount was equal to one-fifth of Mohan&rsquo;s monthly earnings was unknown to the healthcare providers looking after him.

A week&rsquo;s waiting time to receive reports for blood investigations was reported to be &ldquo;usual&rdquo; by few people at the center. However, this waiting period was often more than 3 months for CT scans and MRI scans. Nine out of ten patients I spoke with had had these scans done in private centers, which cost them around five to ten thousand rupees. &ldquo;I was worried my cancer would grow further and so I borrowed money to get the tests done quickly,&rdquo; told Mr Shyam (name changed), a 45-year-old farmer from Uttar Pradesh who was suffering from cancer of the tongue.

Even though medicines are dispensed free of cost in government hospitals, under-stocked pharmacies force people to spend from their pocket to purchase drugs from private pharmacies. &ldquo;His pain is unbearable. There are times when he begs me to kill him to relieve him of the pain,&rdquo; said Mr Raman (name changed), the son of a 55-year-old man who was diagnosed with late-stage oral cancer. &ldquo;We were prescribed medications for pain but those medicines were not available in the hospital pharmacy. They are too expensive to be purchased from outside,&rdquo; Raman said as he tried to comfort his father who was crying in pain.&nbsp;

&ldquo;I had 500 rupees to come here. I spent 200 rupees to travel to the hospital. I was asked to buy a medicine that was not available in the pharmacy here, so I had to spend 200 more to purchase it from the shop outside the hospital. Now I have only 100 rupees left. How will I go back home now?,&rdquo; asked Ms Afreen (name changed) who was traveling from a village nearly 50 kilometres away with her sister for her treatment.

Not just patients with cancer but their caretakers also lose their jobs when seeking care in a different city. This is nearly always the case for 70% of our population that resides in rural India, where cancer care is close to non-existent.&nbsp; &ldquo;I used to work as a mechanic in my village. I have been in Delhi for the past 2 years for my wife&rsquo;s treatment. Some days I earn some money by doing menial jobs. Most days I have to struggle to even feed my family. I have a 3-year-old daughter I also need to look after,&rdquo; said Asif (name changed) as he tried to not break down in front of his wife. Loss of livelihood leads to poor compliance with treatment, as families have to return to their native places to arrange for some money in order to return to treatment.&nbsp;

Is providing good quality, accessible, and affordable care that does not push people into poverty an unrealistic dream? Dr Ravi Kannan from Cachar Cancer Hospital and Research Center in Assam has proved that providing such care is possible. His center provides not only free treatment to patients but also provides free lodging and food to people traveling long distances for treatment. To further reduce the financial toxicity of cancer treatment, the center also provides ad hoc employment to caregivers of patients. For the patients who can not travel to the center, Dr. Kannan&rsquo;s center provides home-based care.&nbsp;

During my undergraduate training I was told, &ldquo;To treat Ramu, you should know Ramu.&rdquo; But do we really know the patients we are treating? Do we know their struggles? Is the treatment that we are providing in government hospitals really free? Are we trying our best to make healthcare as accessible and affordable for our people as possible? Are we treating just the disease or the person with the disease? Can the model of care provided by Cachar Cancer Hospital be replicated in other parts of the country? As we move closer to 2030 with the aim of achieving universal health coverage, it is vital we try to answer these questions.&nbsp;

Is Seeking Cancer Care in Government Hospitals Really Free

Is Seeking Cancer Care in Government Hospitals Really Free?

For the past six months, I have been talking to patients with oral cancer, trying to understand why in our country oral cancer is diagnosed mostly at an advanced stage. Oral cancer is the second leading cancer in India and the leading cause of cancer in Indian men. In the early stages, its treatment is not only cheaper and shorter but also has a better outcome. However, nearly 2 in every 3 oral cancers is diagnosed at a locally advanced stage.

I have heard countless stories of struggles from patients and their relatives. However, today&rsquo;s story highlighted a struggle that I have never heard or seen anyone experience.

A 65-year-old man, Mr Singh, walked into the OPD to see the doctor to get clearance for his next dose of chemotherapy. Mr Singh was suffering from stage 4 oral cancer. His wife, a 60-year-old frail woman, was accompanying him. They had traveled one hour by bus to get to the hospital. &ldquo;My ticket is free on the bus but his ticket costs 50 rupees for one way,&rdquo; Mrs Singh told me as I began to understand their struggles.

Mr and Mrs Singh had two sons. However, both sons had cut contact with the parents. While one son lived in Rajasthan, Mrs Singh had no idea where the second son lived as they had not spoken in years. Lack of support from their sons intensified their struggles. &ldquo;My husband was a driver and was very active. He used to earn 15 to 18 thousand rupees per month. We were living a good life till 6 months ago when he was diagnosed with cancer. For the past 6 months he has not been able to work,&rdquo; told Mrs Singh.

With a debt of 250,000 rupees to pay, the old couple struggled even to get enough food to eat. &ldquo;Our neighbors help us and give us money to come to the hospital. An NGO gives us some ration every month. Occasionally he gets hungry while waiting in the hospital and I have to buy juice for him as he can&rsquo;t eat anything. Sometimes I don&rsquo;t have the money to buy that either.&rdquo; - Mrs Singh.

These stories of struggle were similar to what I had heard from others suffering from the same disease. Lack of money, no family support, and old age often make living with cancer worse than it should be. Most people who get diagnosed with oral cancer are poor to begin with, but the financial impact of seeking cancer treatment makes even getting a meal per day challenging.&nbsp;

When Mr Singh visited the hospital the first time, the disease was at stage 2.&nbsp; However, now, 4 months later, it had progressed to stage 4. Despite receiving multiple treatment dates, Mr Singh was not able to start his treatment due to his native house getting destroyed due to Rajasthan&rsquo;s Biparjoy cyclone. However, while I was going through his file, another reason for the delay caught my attention.&nbsp;

&ldquo;The patient was not willing to get admitted and so did not receive all the chemotherapy drugs that were planned,&rdquo; read the doctor&rsquo;s note.&nbsp;

I thought to myself, why would they not get admitted, why would they further delay appropriate treatment even after reaching the center, even after knowing that the cancer is progressing? Fighting the instinct to blame the patient for non-compliance, I decided to investigate instead.

&ldquo;The door of our house is broken and we can not lock it from the outside,&rdquo; said Mrs.Singh, further confusing me. &ldquo;They sell liquor on the street where we live. When we leave the house to go to the hospital, drunk people break into our house and steal our stuff. I have asked my neighbor to look after the house for now. If he gets admitted, both of us will be in the hospital. During that time all our stuff might get stolen.&rdquo; she continued, and clarity finally dawned on me. &ldquo; But we have no option now,&rdquo; she sighed. &ldquo;He is in too much discomfort. We will ask the doctor for a date for admission for his treatment.&rdquo;&nbsp;

An open unlockable door - a triviality most healthcare workers and researchers would not have even thought about, stands in the way of lifesaving treatment for Mr.Singh. Just chemotherapy did not hold the answer to his good health. Poverty and social isolation, as always, tipped the scale even when free treatment was available.&nbsp;

I consider the innumerable open doors that stand unconsidered, blocking access to healthcare for too many people, and wonder if universal access to healthcare is a dream too far away to be realized.&nbsp;

&nbsp;

Edited by Christianez Ratna Kiruba.

Image by Janvi Bokoliya.

India aims to achieve universal access to healthcare by 2030. What challenges lie in the way?

An Open Door Blocking Access to Healthcare

Parth Sharma&nbsp;is a physician, researcher, writer and founding editor of Nivarana.

Parth Sharma is a physician, researcher, writer and founding editor of Nivarana.

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Parth Sharma

Parth Sharma

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