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Submitted by PatientsEngage on 12 December 2020
Universal health coverage day: Health for all, protect everyone, together, we can

The theme for UHC2020 ‘Health for All. Protect Everyone. We explore what this means, especially in light of the Covid-19 pandemic and bring together views of patient advocates and disability advocates. 

According to WHO, Universal Health Coverage means that all people have access to the health services they need, when and where they need them, without financial hardship. It includes the full range of essential health services, from health promotion to prevention, treatment, rehabilitation, and palliative care.

The pandemic has exposed the limitations in our healthcare system, the level of readiness, the lack of standardization and coordinated responses and the challenges of public health communication
Each time a person is taken ill, it takes a few people to help the family navigate the illness. And it’s the same for someone with chronic illnesses. They are constantly having to figure out how to access and navigate the care options available. Covid with its need for isolation, distancing and travel limitations has amplified the challenges. 

Care options like therapy and rehabilitation which allow persons with chronic conditions to maintain a good quality of life were impacted. The elderly who are especially vulnerable in this pandemic, were further isolated and disempowered. 

While mental health has been talked about a lot, more can be done to reduce financial hardships, one of the significant causes of stress, anxiety and mental health issues. Prevention and early detection were compromised, the impact of these is yet to be measured.

While there are a lot of challenges, the future is not bleak. The pandemic has seen patient groups step forward, there has been a willingness to explore new and innovative ways of using technology. More can be done but it really should be done keeping keeping needs of patients and persons with disabilities at the heart of it.   

We are joined by patient advocates and disability advocates who share the experiences of the communities they represent and what they would like to see going forward.   

Kirtida Oza, Founder Sjogren's India, Patient Counsellor and Educator

The theme for UHC2020 s “Health for all: Protect everyone”. However even now most of 450 Rare diseases as yet identified in India (out of 7000 Rare Diseases) and over a 100 Rheumatic chronic conditions are not included in the list of conditions requiring special attention in the Indian Health Policy. These unrecognized conditions desperately need to be given special support for faster diagnosis, making arrangements for the necessary medication and special needs, recognition of the disabilities (often invisible) under the RPWD Act and much needed financial support. 

The Covid19 pandemic further emphasized the urgent need to recognize and protect these unseen sufferers when health conditions regressed with unavailability of timely medical support, rehabilitation services and even access to life saving special dietary supplements and medication. Greater public awareness and better integration in society is the need of the hour.

Vandana Gupta, Founder V Care Foundation, Cancer Survivor 

Universal health coverage means that all people have access to the health services they need (prevention, promotion, treatment, rehabilitation and palliative care) without any fear of financial hardship. It should be a joint vision for healthy lives ,service delivery, health financing and governance.

During the Pandemic many new adjustments and changes had to be incorporated. Unfortunately the awareness and screening programs for cancer came to a stand still. 

The positive was the role that teleconsultation played and the development of small treating centres with the guidance of big Doctors and centres. The physicians were conscious of the hardships of patients. We incorporated video calls to our support group program. Everybody collaborated to ensure that the needs of the patients were met to the maximum possible.

Nupur Lalvani, diabetes advocate, certified diabetes educator and and founder Blue Circle Foundation

The pandemic has made us realise that India must on an urgent priority, invest in health systems so that we can handle global challenges better in the future and build back better. The right to  health is a universal right for all and UHC is even more important and relevant in low and middle income countries such as our which are leaders in diabetes. India has over 77 million persons with diabetes which is a dangerous co-morbidity in the light of Covid-19

Smitha Sadasivan, MSSI Chennai, Self advocate, Disabiity Rights Advocate

The pandemic taught us that the community support structure should be stronger and interlinked with people. Local health centres to be sensitised on the needs of diverse groups of populations. Disaggregate data must be  made available with local structures for any emergency and public services. 

Gopinath Ramakrishnan, Managing Trustee, Special Child Assistance Network (SCAN), a support group for families of special needs children

The COVID-19 pandemic has shown the world the importance of healthcare for everyone. It has become clear that healthcare infrastructure built based on affordability and population density will simply not work.

For the disability community in India, the impact has been more pronounced. Availing healthcare facilities has always been a challenge due to lack of accessible clinics and hospitals; most places do not have ramps, tactile flooring, braille signs or design for sensory comfort. With the country-wide lockdown, even home-based care, especially therapy, became unavailable.

For those with intellectual and developmental disabilities, the pandemic and resultant lockdown exacerbated the social, cognitive and communication challenges that many of them face. Some have been unable to fully comprehend the reasons for the abrupt change in routine and come to terms with staying at home for such a long period. This has resulted in emotional and behavioural turmoil - bouts of depression, anger, violence, etc. - as well as physiological disorders such as gastric issues and seizures, which further aggravate the behavioural issues. In short life during the pandemic has been difficult for persons with disability and for their parents and caregivers.

What I Wish For

  • A holistic approach to healthcare following the principle of “a healthy mind in a healthy body” and more attention to emotional and psychological wellbeing along with physical health.
  • We need an integrated approach that recognizes the fact that Persons with Disability have a diverse set of healthcare and other needs that need to be addressed. Specifically, for healthcare, this would mean that the needs of the disability sector feature in the planning and implementation of healthcare initiatives from the start, and not as an afterthought.

Sunita Harkar Shalla, CEO Child Heart Foundation

Congenital Heart Diseases (CHD)s are one of the most common birth defects. The disease burden is more in developing countries. In India 1 in every 100 new born has heart disease. There are more than 180000 to 200000 children born with one or more types of CHD. Only 15000 get treated, rest don’t survive or are added to pool of waitlisted patients. Most of the congenital heart patients require treatment in first year of their life, poor parents find it impossible to raise funds for treatment which can run into lakhs. They end up losing their children 

What we want on UHC Day:

  • Training pediatricians in echocardiography for early screening. 
  • Creating community awareness regarding the disease 
  • Built more Government hospitals for free/ subsidized treatment 
  • Insurance cover for the diseases 
  • Pulmonary hypertension medicines to be made available free and linked to aadhaar  

Dr. Maria Barretto, CEO Parkinsons Disease and Movement Disorders Society  

The pandemic has taught us that though life may be challenging, it does not mean that we have to restrict ourselves from exploring new ways to stay connected and learn new things. The Parkinson’s Disease and Movement Disorder Society has adapted and initiated many free-of-cost resources and services to online platforms to reach people with Parkinsons and their families across India during the pandemic.

On behalf of the Parkinson’s community I wish for peace of mind and physical wellbeing to all. Don’t lose hope we’re all in this together

Akila Vaidyanathan, Founder Amaze Trust, Autism Mom, Autism Advocate

The global pandemic has pushed the question of health and wellness to the forefront of all priorities, above even economic robustness or survival .For those with disability, the main issue has been access to good health care in terms of physical access, social access. 

Another issue is lack of options for health insurance coverage in India. Even though the IRDA has given directives to Insurance providers to create schemes for the health coverage of the disabled, this is yet to be implemented .

During the pandemic, the hospitals are the last place anyone wants to go to.  People are postponing regular health check ups, tests, procedures and consultations.  This by itself is a big hazard to preventive care.

The disabled  communities have been really pushed further to the edge … as the facilities - right from access to support-  has been inadequate .There are no specialized Covid wards for the disabled , no protocols in place in case they or a family member or caregiver is affected ..so many gaping holes are there in the system ..if one can call it a system at all  .

The mental health of persons with disability and their caregivers has also been a great concern . Many are not able to access their regular therapies, schools and work places  .Besides the economic burden , the burden of caregiving has increased and so has the isolation of the families. There really needs to be a comprehensive way of supporting persons with disability and their caregivers for their mental well being .

While we all eagerly await the vaccines and other interventions for Covid which hopefully help the world hobble back to a semblance of “normalcy”  I believe the time is right to review the systems for  both preventive health care , mental health support and medical care for the disabled community  and set up some best practices and implement them on the ground .

The silver lining has been that people are focusing more on about  lifelong practices that promote overall health  and reviewing and adopting better lifestyle choices for food, exercise and even looking for  positive engagement and work that does not burn one out . So my wish is for more of this focus to continue even post pandemic times ..for all.