Saturday, September 7, 2019

Patient Champion Spotlight: Jyotsna Roy

August 2, 2019

During the 2019 World Health Assembly (WHA) in Geneva, Global Health Council provided several patient champions with the opportunity to share their stories, and contribute to discussions around universal health coverage (UHC). Following the Assembly, we sat down with each patient champion to get their thoughts on WHA. Hear from our patient champion Jyotsna Roy who volunteers with the Nada India Foundation. Nada India has been creating the spaces & nurturing diverse networks of community-based initiatives amongst the marginal and most at-risk populations in the urban and rural. Through its capacity building work Nada India has enabled the vulnerable adolescents & youth to make choices for healthy ways of living. Nada India has also included in its programmes senior citizens and women from the “urban villages”. Gender equity is a strategic objective of Nada India in its vision for a Gender Equal and Just society. Additionally, Nada India works under the framework of the Convention of the Rights of Children, CRC, with children, adolescents and PLWNCDs through the Young India Network for Good Health.

Tell us a little about yourself?

I am an Indian woman and my name is Jyotsna Roy. I have been diagnosed with rheumatoid arthritis, which has impacted on my mobility, motor flexibility and sometimes the acuity of my brain. However, on a positive note it has made me sharply aware of the signals my health conditions give me. I am prepared for the long haul of this disease and the consequent morbidity. I am also aware that the medical insurance that I have does not cover this disease. In spite of having a condition which requires close daily monitoring and self –management, I travel and work on international assignments and also in post conflict situations.

I advocate for general “good health and wellbeing” among women who have rheumatoid diseases, specifically focusing on youth with mental health and substance dependence including alcoholism. Nada India, the organization I volunteer with, works with youth groups and also does work through community-based mobilization.

Describe one of your favourite events or one-on-one conversations during WHA, and why?  

The gala evening [Heroines of Health] organized by Women in Global Health in which professionals delivering health services at different levels from specialty hospitals to the primary health care centres were acknowledged, thanked and felicitated.

The session on “accountability” at all levels and through the different stakeholders who are the rights holders and duty bearers. The targeted and transparent delivery of resources and accounting for it is key for efficient and effective service delivery of health services.

In the one-on- one with the fellow Patient Champions we agreed that the political will to reach the last person who needs support for ensuring health is critical and essential. The second is the availability of resources, technical and financial, through the public and private sectors’ participation and contribution was also discussed.

We know this was your first time at WHA. Did anything surprise you?

At WHA for the first time – yes! The availability of snacks and beverages after each event really surprised me, as in other such events these things just vanish.

On a more serious note the partnership of the twelve organizations that are working on the different “accelerators” for the Global Action Plan for Health and Well-being impressed me. The research and development, and the demographic research for the incidence, prevalence and surveillance of diseases as essential accelerators are critical for the Sustainable Development Goal (SDG) 3 and its targets. The accelerator on civil society role and engagement and its discussion and actions will interest me.

What were some of the main recommendations or insights that you provided on panels or discussions?

Wow I spoke from experience…

One of the important highlights was that health is hugely gendered and embedded in the socio-cultural and economic micro –and macrocosms.
Ill health costs livelihoods. This affects the workforce and even causes underemployment among the professional or white-collar workforce.
Non-communicable diseases (NCDs) are mostly not recognised and are a long-term financial burden. There is cause for anxiety and stress related to suffering an NCD because of the longevity in a morbid state and the risk of other comorbidities (NCDs) occurring along the way. Medical insurance does not cover NCDs, the medication, or the disabilities that follow.
There is need for more research on specific NCDs, in addition to the big five diseases. Patient testimonies will be of immense use. Patient empowerment through emotional support, information on holistic health traditions and variety will lessen the morbidity and make them productive.
Women’s health is not only reproductive health. I suspect that the prevalence of NCDs is high among women.
How do you plan to continue or relay these global conversations back home?

The WHA has created a flurry of activities here too, Delhi/India, and we had a youth roundtable on Health, a workshop on SDGs with 200 college students (youth again) as well as a one-day workshop for community health counselors after I returned. And everyone would like a byte and a blog, post event! Phew!

In addition, Nada India has a calendar of events and I am invited to participate and facilitate and contribute. The Young India Network for Good Health is an active network which works at the community level and in the campuses. They are completing a baseline survey on ‘Prevalence of NCDs among alcohol and drug users in Delhi/NCR (National Capital Region)” to understand the need for provision of health education on non-communicable diseases and its risk factors at rehabilitation centres for substances and alcohol dependents.

The members of this group are media savvy and use mass media for messaging on health. This group of young people self-finances their activities of research, awareness raising, community mobilization and action. For them to move to the next level in terms of outreach and engagement with issues and advocacy they need financial and technical support. A very senior journalist blogged about the efforts. I am on call for them as a Resource Person.

What are your top three takeaways from the week?


  1. Patient Empowerment and Patient Advocacy
  2. Get savvy in the use of social media
  3. Partnerships at all levels and geographical spread, to move the SDG 3 agenda and its asks for technical cooperation, effective financial mobilization and Accountability.
Copy rights are with Global Health Council 
Source courtesy:   https://globalhealth.org/patient-champion-spotlight-jyotsna-roy/

Friday, June 21, 2019

Peedith' or the Victim (Survivors) and ART FOR WELL BEING

Afilash Issac 
Keeping in view of Alcohol as well as the its addicted beneficiaries many portals as well as posters had been groomed up in our society so far.

On my personal level has attended many art exhibitions pertaining to many social issues or social evils. I once got an opportunity to interact with few artists from other states of our country who expressed their own inner feelings which inspires them to portray their inner imaginations on the white sheet which waits for the artist to get itself embedded with the human feelings which in one way or the other hold the capacity to heal if correctly discussed with or in a meaningful platform.
Caricature by Aflilash
Caricature by Aflilash  

Nada India Foundation the pioneer in many of the Health advocacy programmes which believes in well being of all which under the dynamic leadership of Mr Suneel Vatsyayan who is the Chairperson and keeps the capacity of opening up many blockades among the 'Peedith' or the Victim (Survivors) and the grave issues which they undergo.

During a conversation with Mr Suneelji also with the presence of Mrs Pallaviji and Mrs Pushpa who works as a Volunteer with NIF, many groundbreaking imaginations as well as naked realities came in my mind when Pushpaji was requested to put forward her story which once gave her a tornadic experience compelling her to end her life but was pushed back to life keeping her future associated with her children who didnt committed any mistake knowingly or unknowingly.

It was with a strong gesture she presented her all agonies with us. In the starting itself Suneelji suggested me to copy down the essential facts and to present it in an artistic impression. 

The encouragement and enthusiasm which i derived from him, especially in expressing all of my artistic imprints conveyed all most a jist of study towards this substance abuse. The meeting was very much alive which almost dealt with stigmas which every of our Indian lady carries on with her if one among the family is addicted with this substance called ALCOHOL.

Very sooner I was able to draw an artistic impression in relation with whatever she(Pushpa) narrated. One factor/reality which emerged out from that meeting and which also strikes me was......"Dar zaroori he" which lead me to quote "There is no GAIN without a PAIN".

But the fact is that why we should all wait for PAIN? Why can't we uproot this before it touch the person through various sources.

Thanks to Nada India who very bravely sents out its volunteers to study and to counsel the
addicted as well as who advocates such evils in the society.

I personally thank NIF and the unsung heroes who had taken such heroic steps for the welfare of the society and would like to extend my humble thanksgiving to Suneelji who gave me an opportunity to get associated with NIF as well as to use my art work which was once used to earn the bread but nowadays used to serve the society under the banner of ART FOR WELL BEING.

Thursday, June 6, 2019

“Health is highly gendered especially the NCDs...... Jyotsna Roy, Patient Champion Nada India

She added, “Health is highly gendered especially the NCDs. When I say, I have Rheumatoid Arthritis, the interest in my condition and the accompanying morbidity somehow lessened in the hierarchy of NCDs. And I see this among other female patients.” Instead of giving up, Jyotsna Roy is busy as a health advocate inspiring others who are victims of non communicable diseases to live bravely. And help others. Incidentally Jyotsna Roy attended on behalf of Nada India the 72nd World Health Assembly early this month in Geneva organized by the WHO.
Prof.T.K.Thomas 
The annual World No Tobacco Day was observed on 31st May. The day is observed by the World Health Organization [WHO] and global partners as an opportunity to raise awareness on the harmful and deadly effects of tobacco use and secondhand smoke exposure and to discourage the use of tobacco in any form. This year’s focus for the day was, “Tobacco and lung health”. Everyone knows how tobacco affects our lungs. The WHO release says, the campaign will increase awareness on, “the negative impact that tobacco has on people’s lung health, from cancer, to chronic respiratory diseases”.

There are frightening figures about the mortality attached to tobacco related diseases. A study by three Indian researchers in 2012 revealed that “tobacco is a leading preventable cause of death, killing nearly six million people worldwide each year. Reversing this entirely preventable man made epidemic should be our top priority. The global tobacco epidemic kills more people than tuberculosis, HIV/AIDS and malaria combined. India is the second largest consumer of tobacco globally and accounts for approximately one sixth of the world’s tobacco related deaths”.

Despite the above shocking figures, last Friday’s Anti Tobacco Day went off silently with hardly any major events or the media highlighting the critical importance of this major health problem. Such issues on our health and well being are not a priority for a highly commercialized media except when there are breakouts of epidemics or health disasters or emergencies.

It may be mentioned here that a new problem has emerged with the increasing use of what is known as ENDS [Electronic Nicotine Delivery System] or e-cigarettes and on World No Tobacco day last week the Indian Council of Medical Research [ICMR] released a White Paper recommending “a complete prohibition on e-cigarettes in India in the greater interest of protecting public health.” The White Paper further points out how the country has worked hard and succeeded in effecting a 6% decline in tobacco use. Hasn’t the spread of e-cigarettes as an addiction subtly promoted by commercial interests put a question mark on that success story of slowly winning the fight against the scourge of tobacco?

Addiction to alcoholism, smoking and abuse of designer drugs are lifestyle non communicable diseases unlike communicable diseases caused by germs, bacteria, viruses etc. There is increasing recognition of non communicable diseases as a major threat to health and well being. Mercifully health care issues now focus more on non communicable diseases.

One has come across a very interesting document by the NITI Aayog entitled “Strategy for New India@75”. The statistics on health given in the document are revealing. For example, of total current expenditure on health classified health care functions, preventive care accounts for 6.7 percent and the money spent on curing people on the other hand is 51% of the expenditure. India accounts for 18% of the global population [2016] but we account for 34%of the global tuberculosis burden and 26% of the premature mortality due to diarrhoea, lower respiratory and other common infectious diseases. 
 “At the same time non communicable diseases [NCDs], including cardiovascular conditions, chronic obstructive respiratory diseases, diabetes, rheumatic arthritis, mental health conditions and cancers are now the leading cause of health loss, with 55%of morbidity and premature mortality attributed to these conditions.”

There was this interesting brainstorming by Nada India on June 1st as a continuation of World No Tobacco Day and marked the launching of Young India Network for Good Health, a youth initiative. Spearheaded by its chairman Suneel Vatsyayan, an acclaimed substance abuse prevention veteran, the programme highlighted participation of youth in combating the rampant problem of non communicable diseases. Vatsyayan said that the WHO uses the hashtag #beatNCDs and called upon the youth to put that hashtag into action! 


The participants comprised a mix of experts, health advocates, people living with NCDs including, patient champions and young volunteers associated with the field. It was a learning experience to every stakeholder present and this piece is an attempt to highlight people living with NCDs and their caregivers. Such initiatives may be on a small scale but across the country we have such concerned small groups of youngsters creating awareness among ordinary folks.

 The presentations of three doctors at the event, Dr. Ajay Vats, chair person of Indian Association of Acupuncture Detoxification Specialists [IAADS], Dr, Arindam Sinha, NADA Acupuncture Detoxification specialist and
 Dr. Bharat Bhushan, vice president , Federation of NGOs for Drug Abuse Prevention [FINGODAP] facilitated the understanding of the young volunteers of the issues involved in non communicable diseases. As professionals dealing with alcohol and drug addiction prevention, they highlighted addiction as a major NCD. They stressed the need for detoxification, treatment and long term recovery programmes. 
Dr. Sinha emphasized the effect of NADA protocol on various NCDs such as diabetes, hypertension and insomnia.

There were ‘’patient champions” running peer led drug rehabilitation centers. Two such national award winning entrepreneurs Pradip Goyal, who runs Vikalp in Ghaziabad and Harish Bhutani who runs Nav Vikalp in Jaipur explained the challenges of working with patients who have, besides addiction, cross cutting NCDs like, Tuberculosis, diabetes, HIV/AIDS and mental health problems.
 The mental health Act of 2017, they said has made registration of de-addiction centers mandatory with standards of care prescribed and daily visits by a psychiatrist made compulsory. Addiction as a NCD is therefore acknowledged as a mental health issue. The question of smoking by inmates of deaddiction centers was raised in one session of the day long deliberations. Care providers agreed that smoking is a problem. It was pointed out by one of the experts that smoking in health care facilities is banned.

Dr. Sinha emphasized the effect of NADA protocol on various NCDs such as diabetes, hypertension and insomnia.

There was also Devendra Jyoti, a peer support activist, [himself suffering from NCDs] who works with homeless people in Delhi for Ashray Adhikar Abhiyan. As a Nada volunteer, he helps a self help group of homeless people. He pointed out the reality of the life of homeless people in Delhi and elsewhere. Most of them are victims of one or more NCDs.

The most talked about NCD is cancer. World Cancer Day is observed on February 4, 2019 and all the media come out with reports and special features. Cancer awareness programmes, need for early detection, success stories especially of celebrities, occupied front pages and prime time. People are mortally scared of the disease and cancer is one of the scourges mankind is yet to conquer. Cancer spares none. For example, a peer support counselor and recovering addict Dayanand died of cancer, not addiction, a few years back at the age of 36.

Yesterday, 2nd June, incidentally was observed in the United States as Cancer Survivors Day. Special events are organized in the U S to celebrate the lives of the survivors and acknowledge the dedicated service of caregivers. The U S President’s message on the occasion was for the 32nd annual Cancer Survivors’ Day. The Day was noticed by some of our channels also. At least there was the story of actress Lisa Ray, professionally active, living with Multiple Myeloma, a form of blood cancer. Her memoir “Close to the Bone” is considered inspirational by readers. “We should reflect on death at some point in life. It helps us to prepare better“, said Lisa Ray in a television interview on 2nd June. That is the spirit of a person living with a NCD.


 In the programme in Delhi on NCDs about which one has written had a presentation by a person living with NCD, Jyotsna Roy who narrated her story of living with rheumatic arthritis, a painful NCD that can have crippling effects. She said,
 “There are 5 million people like her who are Rheumatoid Arthritis Sufferer-Survivor [RASS]. It is a silent non communicable disease not talked about much and not listed as a major NCD. It mostly affects women leading to challenging mental states and responses”.
 She added, “health is highly gendered especially the NCDs. When I say, I have Rheumatoid Arthritis, the interest in my condition and the accompanying morbidity somehow lessened in the hierarchy of NCDs. And I see this among other female patients.”

Instead of giving up, Jyotsna Roy is busy as a health advocate inspiring others who are victims of non communicable diseases to live bravely. And help others. Incidentally Jyotsna Roy attended on behalf of Nada India the 72nd World Health Assembly early this month in Geneva organized by the WHO.
“Health is a hugely gendered question, which we have not talked about
nearly enough. I urge the GAP and all of its accelerators to adequately
account for the impact of gender on health.”
Jyotsna Roy, Patient Champion, Nada India Foundation 

It was heartening to see young volunteers coming together to work with people living with Non Communicable Diseases. Vindhya, a Nada India Young India network volunteer pointed out that,“with the growing young population in India, it becomes extremely important to involve youth and understand their needs at the policy level. This can help them to effectively deal with the cross cutting issues like linkages between alcoholism, tobacco use and tuberculosis. The government must make the political decision to put youth first to make the universal health coverage a reality.” Peace Gong volunteer coordinator, Arunesh Pathak concluded that, “we are motivated to work on NCDs like alcoholism increases domestic violence and as we work on nonviolence such activities assume more meaning.”
Source courtesy:  https://www.pennews.net/opinion/2019/06/04/inevitable-role-of-young-india

Saturday, March 30, 2019

I am, a woman, one of the 5 million persons, in India, who are Rheumatoid Arthritis Sufferer- Survivor (RASS)


Nobody dies of Rheumatoid Arthritis but of illnesses that are induced by Rheumatoid Arthritis through the compromised immunity of the body.  


It is a silent non communicable disease not talked about much and not listed as a major NCD.  It mostly afflicts women leading to challenging mental states and responses. 
I am, a woman, one of the 5 million persons, in India, who are Rheumatoid Arthritis Sufferer- Survivor (RASS).
I had just finished a huge project which contributed to the efficiency of one of the two National duties.  My team and I worked 18 hour days for five straight months. Even while working at the national scale I had a severe attack of Psoriasis on my hands and soles of my feet. The skin on my palms and sole was dry as caked clay and cracked. It was worrying, painful, and cosmetically ‘not nice’.  Once the Psoriasis cleared Rheumatoid Arthritis set in. All joints were affected but the hip joint. I was almost crippled, incapable of the most basic and simple mundane routine activities. I could not lift my head, my eyes hurt, body bloated and mind fogged. It was bewildering for me. 

I think that a  severe deep personal trauma, the long hours of work with indifferent diet and responsibilities were the triggers of the RA that must have been dormant in my system.

Fortunately I had and don’t have diabetes and hypertension in spite of the humongous task just accomplished and my condition. I visited different specialists and had different diagnostics conducted. But the condition kept getting worse. Finally the Senior Consultant of Internal Medicine advised a consultation with the Rheumatologist. Medication, regular follow up and temperature control put me on the path to recovery.  And I was travelling international for work after three months.  I was surprised that not having the courage to even think, leave alone attempt it, I walked up a hill to see the beautiful lake and another one to see a Dzong.  

So nothing is permanent. Everything changes. All we need to do is to be aware, make the effort and ask for help when needed. RA makes one extend the boundaries. Do things that seem impossible at certain times. So, what did I do to manage my condition to turn from sufferer to support provider? I did the following which I shared on Rheumatoid Arthritis Network- India, RAN-I,  FB page.

  • Make sure you work to reduce your stress...
  • Make sure you do some sort of workout/ exercise...
  • Make sure you reduce the 'whites' in your diet....
  • White flour sugar, common table salt, sugar, synthetic milk...
  • Instead have the greens, yellows, reds and browns
  • Nuts and crunchy leaves and seeds
  • The spices on your kitchen shelves
  • Cinnamon coriander cardamom cumin fennel oregano black pepper curry leaves basil leaves mint leaves...
  • Coconut water cucumber juice spinach juice
  • Lots of fluids...
  • Get fresh air
  • Be happy 
  • Try to chill even on a bad day
  • Watch a movie
  • Go out
  • Be informed about your treatment and medication
  • Talk to your treating physician
  • Remember there are more than one systems that can treat RA
  • A combination often works.
  • Keep warm and dry.
  • Switch on the A.C. 30 mins before you hit the bed
  • Switch it off when you hit the bed...
  • You will wake up with reduced stiffness.
  • Plan challenges that will make you work on reducing the pain and discomfort...
  • Meditate, walk in nature, make a small garden of few pots, do clay work ...all this will give you positive energy...
  • Get up....don't wait for someone to give you the glass of water
  • RA can be managed and it will not take over your life.
  • To all of you who like this page....
  • From a recovered cripple moving beyond boundaries. 
  • Much love.


THE OBJECTIVES of RAN-I are to connect for sharing of experiences, asking for suggestions, among those who are suffering, have survived and live with Rheumatoid Arthritis conditions and between RA affected and experts.
Who can join and are invited? Anyone who has the RA condition and or is caring for someone with it, nutrition advisors, skin care advisors, exercise and self management trainers, medical experts from all schools of medicine, mental health experts, and anyone else who empathizes.
This is not supported by any business interests and those with business interests are not welcome.
The reason we build this network is that in India there is no place to share and meet FOR THOSE WHO HAVE THE RA, WHICH IS PART OF an Individual's LIFE ONCE IT VISITS. The morbidity is high but unrecognized.
On February 2 2016, named as world RA day, a What’s App group called Aasha was started and has already a conversation going.
The promoter of this page and site is RA affected, who is making the best of the conditions. In the role of support provider and caring it is a prerequisite that I take care of my physical, emotional, mental and spiritual wellbeing. I am aware of my health, monitor the parameters regularly, aware of my diet, daily morning walk, gentle yoga, daily meditation, interact with friends,  regular work hours, reduced computer gazing and reduced stress and remove stressors. This has reduced morbidity and fogging and makes me available to support others who need only a compassionate ‘ear’,  or some advice for themselves or a parent and share information.
Join our Networks 
Nada India NCD prevention Network
Young India Network for Good Health 
visit www.nadaindia.info 
Mobile 9810594544 





Thursday, January 17, 2019

Meaningful involvement of People living With NCDs #PLWNCDs



The Healthy India Alliance (HIA) plans to develop a National Advocacy Agenda of People Living with NCDs based on the inputs of those who took part in the five community conversations (Nada organized one such  Community Conversation among alcohol and drug using population )held in the India. Nada India Team (Ms.Nidhi,Devender Joti peer educator (PLWNCD) ,Pushpa caregiver and Suneel Vatsyayan ) participated and contributed in the Healthy India Alliance Regional Consultancy Meeting for the Northern Region in Delhi on 28th August 2018. Nada India is also part of HIA core group on patient engagement. 

 Nidhi shared her experience and feedback
There's an old conventional way of convening corporate meetings but when we work on fronts of issues related to public at large then engagement of participants in the meeting requires breaking those barriers for formal conversation , cut off the veil and talk about the real things in a realistic way.

Mr.Suneel Vatsyayan has done the same , he shaken the participants in the meeting and tried to bring their attention on the fact that as we have to focus on meaningful engagement of people living with NCDs and it's risk factors like alcohol and drugs to do the same we hv you first meaningfully engage ourself in terms of language , personal real life experiences and real life experiences of people we are talking about.
The body language was intimate and words chosen were close to human beings ,that made most people relate as to talk more openly. 
Kept sticking to and time and again asked others to focus on the topic and reality. 
Perhaps Suneel Vatsyayan Chairperson Nada India was the only one who was more experienced than others in community work.
Very purposefully conveyed his msg. Also shook people to take off mask and talk freely as one time or another we all have to face same difficulties for the purpose we are here for discussions.
 Pushpa both as Nada community worker shared her experience well.
Also as care giver she shared her true feelings. Her wounds are fresh and she needs time to heal. But her spirits are high and ver courageous lady she is.


Devender Joti one of the peer educator of Nada India shared his personal experience and professional experience well in dealing with PLWD and NCDs.

As he has worked in social sector that is unorganized work sector ,he has worked in a free environment with less obligations to adhere to certain way of work and that is good also as we are not in any race for perfection and one should not be.
Its good we as People Living with NCDs got opportunity to express ourselves freely and also hv choice for work. Nidhi Nada India Team.
MEANINGFULLY INVOLVING
PEOPLE LIVING WITH NCDs
What is being done and why it matters
https://ncdalliance.org/sites/default...

Tahira Kashyap Khurana is a film maker & breast cancer survivor shared her life story

Pallavi briefed Tahira Kashyap Khurana about Nada India and Young India Network for Good Health .  Tahira Kashyap Khurana is a film make...