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.
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