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

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