Voiceless but not speechless

Voiceless but not speechless

TBI Blogs: This Small-Scale Farmer Bravely Fought Cancer and Is Now Helping Others Fight Tobacco Addiction

Meet Durgaiah, a farmer and a cancer survivor who not only won the battle against throat cancer, but is now using his second chance at life to train, counsel, and inspire. Dr. Pragati Hebbar explores further.

Settled in a quaint village called Hunsemaradoddi off Kanakpura in Karnataka resides Durgaiah, a small-scale farmer who used to grow ragi, a millet. Very early in life, he got hooked to tobacco use in the form of beedi. Exposed to the habit in his school days, he recalls how common it was for young boys to experiment with tobacco products. The first puff soon turned to a couple of beedis a day, to almost two bundles – with roughly 20-24 beedis in each bundle – a day.

By the time he was in his early forties, Durgaiah’s lungs could no longer take the burden of this excessive addiction, and he was advised by his doctors to give up the habit. This prompted him to reduce, but he couldn’t give it up entirely, and in fact started using chewing tobacco to distract himself from smoking beedis, assuming it was a safer alternative.

The long-standing exposure to such carcinogenic products finally showed their effect around six years ago, when he observed a change in his voice texture, which sounded hoarse. Over the span of a few months, he could barely speak, and finally found it difficult to breathe. This is when he panicked and rushed to Bangalore to understand what was causing this difficulty.

He was referred from one hospital to another, and finally met an oncosurgeon who broke the news to him about voice-box cancer, but at the same time gave him hope that he would be able to speak again.

 

Durgaiah underwent the surgery and radiotherapy, and was cured of the cancer. He loved to speak and was engaged in local theater and drama, and had never felt as handicapped as he did when he lost his voice. Additionally, he’d have to pay an additional ₹30,000 for a prosthesis, to get his voice back.

An elderly gentleman in the same hospital was suffering from a similar condition, and had ordered for an imported prosthesis which had arrived, but unfortunately he didn’t survive the surgery. His spouse graciously offered to donate the voice prosthesis to Durgaiah.

After the surgery, the day he received the voice prosthesis, Durgaiah spoke the whole day, as excited as a young infant who had spoken his first word. He vowed to spread the word on cancer and prevent other people undergoing the suffering and hardship he did.

He laments how an innocent-seeming habit nearly cost him his life and wiped out his hard-earned savings.

Tobacco use claims a million lives each year in India. Durgaiah shudders at the fact that he could have been part of this statistic if he hadn’t received timely intervention. In his neighborhood, he leaves no stone unturned to convince people—especially the youth—addicted to tobacco to give up. He has volunteered to speak at various fora with the Institute of Public Health. There, he sensitizes children, law enforcers, policy makers, and anyone else who doesn’t realize the hazards of tobacco use.

Taking his own example, he strongly believes that awareness on the dangerous and addictive nature of these products is lacking. For example, he strongly believes that the previous warnings of the tobacco packets barely conveyed any message. He is an avid supporter of the large new tobacco package warnings containing photographs of actual cancer patients.

He greatly appreciates this step which makes India one of the leaders globally in this preventive tobacco control measure.

What doesn’t kill you makes you stronger. This phrase perfectly defines Durgaiah’s journey from a small-scale farmer, to a forceful health advocate-cum-motivational speaker.

(The author is a Faculty Member working with the Institute of Public Health, Bengaluru (IPH)).

Help IPH strengthen Indian health systems by contributing to research, training, and policy support initiatives here.

Disclaimer: This post originally appeared in the Better India on March 21, 2017.

TBI Blogs: This 70-Year-Old Lost Her Voice Box to Throat Cancer, but Continues to Inspire Hundreds

TBI Blogs: This 70-Year-Old Lost Her Voice Box to Throat Cancer, but Continues to Inspire Hundreds

Meet Nalini Satyanarayan, a 70-year-old cancer survivor who is now championing the cause of cancer prevention.

Diagnosed with vocal chord cancer in early 2010, Nalini Satyanarayan underwent a surgery successfully in April 2010 and took radiation therapy subsequently. But due to the location of the cancer, they had to remove her voice box, and she was fitted with a provox prosthesis during surgery. The prosthesis is a valve between the food pipe and the wind pipe. It helps one to speak by modulation of air. The international varieties of the prosthesis cost anywhere between ₹20,000 – 30,000. Currently Nalini uses the AUM prosthesis developed by an Indian oncologist, costing only ₹50.

Nalini’s husband was a heavy smoker (making her an inadvertent passive smoker) who passed away due to cardiac ailments before her cancer was diagnosed. Despite the harrowing experience of conquering cancer, she very soon bounced back to a new normal life with confidence and determination.

Fortunately enough, her son, daughter, and grandchildren stood by her in this difficult time and are supportive till date, encouraging her each step of the way.

Tobacco use kills around 6 million people globally each year, of which almost 1 million people are from our country alone. In India, the economic burden of tobacco-related diseases was ₹1,40,500 crore for the year 2011-12, which is about 1.16 % of our GDP, and 12 % more than the combined State and Central Government expenditure on health in the same year.

It is unfortunate that innocent family members are subjected to the harms of tobacco apart from the user, who might or might not make an informed choice. Second-hand smoke is the combined mix of the smoke that comes from burning tobacco products such as cigarettes, beedis, cigars etc., and the smoke exhaled by the smoker. Studies have found this second-hand to contain more than 7,000 chemicals, of which 250 are harmful, and at least 69 are carcinogenic. Globally, about 6,00,000 deaths are due to exposure to second-hand smoke.

This smoke leads to a variety of ailments including cancers, heart and respiratory diseases, strokes, etc.

The above statistics do not convey the emotional suffering caused by tobacco use. Apart from the economic and financial impacts, tobacco cultivation also has significant environmental impacts, leading to large amounts of deforestation. Curing a kilogram of tobacco leaves requires 7-8 kg. of wood, and causes nutrient depletion in the soil.

Since her recovery, Nalini has reached out to as many individuals as possible, spreading the word on cancer prevention. She volunteers for trainings conducted on tobacco control for children, law enforcers, and other relevant audiences. She also counsels patients recovering from surgeries similar to hers who have lost voices and are learning to speak again.

Nalini helps them navigate this crucial time by instilling confidence in them and being a true role model.

Nalini is a proud member of the Voice of Tobacco Victims, and the Pink Hope Support Group in HCG Global. Able to reach out to fellow survivors, she helps cancer patients lead a life of hope after the treatment. She is also a member of the University Women’s Association. She runs two hostels for girls and women from rural areas who come to the city to study or work.

Very few victims of tobacco-related illnesses come back to mainstream society after undergoing disfiguring surgeries. Life has given Nalini a second chance, and she has grabbed it with both hands, becoming an inspiration for many. The Institute of Public Health is proud to associate with volunteers like her. These volunteers lend themselves to the cause of cancer prevention, protecting lakhs of young productive lives from this deadly addiction.

Cooking, cleaning, gardening, using public transport, inspiring children, sensitizing officials, or addressing the media—Nalini does it all with flair. She truly lives up to her motto, “Learn from yesterday, live for today, and hope for tomorrow!”

(The author is a Faculty Member working with the Institute of Public Health, Bengaluru (IPH)).

Help IPH strengthen Indian health systems by contributing to research, training, and policy support initiatives here.

Disclaimer: This post originally appeared in the Better India on February 21, 2017.

Gender in Global Health – Where are the Men?

Gender in Global Health – Where are the Men?

Manoj Kumar, staff at IPH published an article in International Health Policies

 

 

I write this blog based on reflections from a global health conference I attended recently, but the issue of gender (in)equality has also been weighing on my mind for some time now.
Gender equality and equity – we refer you to some literature for the intricacies of the terms – can enable us to create a society wherein each individual enjoys equal opportunities, rights and obligations. And early on in this blog, I would like to clarify that for the sake of this blog post I am referring to gender within the binaries of male and female.

Gender equality is intrinsically linked to sustainable development and vital to the realization of human rights for all. Gender inequities, as one report tells us, can for example damage the physical and mental health of girls and women.  Many of us working in global health and social development are familiar with the literature and discourse on gender and its role in the wellbeing of entire populations. And yet, attending some sessions on gender at the Fourth Global Symposium on Health Systems Research in Vancouver (HSR 2016)  got me [as a male participant] thinking – where are the men?

To read more: Click here

 

Manoj Kumar, staff at IPH published an article in International Health Policies

Manoj Kumar, staff at IPH published an article in International Health Policies

India and the world in 2016: a challenging present, an uncertain future

Google’s “See what the world searched for in 2016” says it all: how has the year 2016 been so far for all of us? Four out of five of the top most trending global news searches relate to disasters – until we started talking about the Rio Olympics. I like the quote there, though, “love is out there”, and on a personal note I’d like to add, “Where hope is lost” and if not lost, speedily fading away.

My country is not alien to this context and process. Of late, when the whole world just focused on a single election and individual, predicting “not so happy” consequences and a whole lot of uncertainties, we Indians were not so startled. Yes, being a stable yet very peculiar economy in our region, sensitive to foreign investment, the Indian rupee, market equities, and trade did slide for a moment following the incredible (unexpected) US electoral results. However, we were not as surprised as many others, perhaps because we had other things to be surprised at. ……(Coincidentally the US election results and the demonetization announcement in India happened on the same day)……   I guess, collectively we are now adjusted to ‘uncertainties’- although with positive hopes.

 

To read more: Click here

 

HSG Speaks: Interview with Wim Van Damme by Manoj Kumar Pati

HSG Speaks: Interview with Wim Van Damme by Manoj Kumar Pati

The ev4gh is an innovative multi-partner blended training program for young, promising and emerging health policy & systems researchers, decision makers and other health system professionals. 
 
This program gives an ideal platform for these young minds to voice their views and understanding on global health issues while being rooted in their local/regional realities. The program entails a distance coaching phase followed by a face to face training phase, the later being usually organised preceding the global symposium on health systems research bi-annually.  
  
Manoj was fortunate to be part of this program as an EV 2016.  Additionally being the official correspondent for the symposium this time,he took the opportunity to interview the man who started this innovative training program six years back- founding father of ev4gh initiative- Prof Wim Van Damme from the Institute of Tropical Medicine, Belgium. 
Here is the to watch that interview link!
For those want to know further on ev4gh, here is the website.