Voices Across America

Too Young, Too Rare, Dismissed

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Manisha Gupta

State: Washington DC
Congressional District: DC01

Diseases

Bone / Muscle Disease, Chronic Pain, Ear / Nose / Throat Disease, Endocrine Disease, Gastrointestinal Disease, Immune Disease, Lung Disease, Migraine, Neurological Disease, Rare Disease

Issues and Challenges

Manisha Gupta has encountered: Access to Expert Providers, Access to Medicine, Copay Issues, Insurance Issues, Medicare / Medicaid Issues, Medical Records Access, Mental Health Access, Rare / Underserved Disease, Transportation, Disability, Discrimination (nonmedical), Financial Assistance, Gaslighting, Geography, Invisible Illness, Job Insecurity / Loss, Legal, Lodging, Medical Devices, Medical Discrimination, Premium Payments, Prior Authorization, Social Security Disability, Step-Therapy / Fail First, Transparency in Health Care, Underserved Community

My Story

I am a 39 year old WOC who has been unable to work steadily since the start of the pandemic due to the progressive nature of my chronic autoimmune, neurological and pain conditions.

My own academic background in psychology (including training in social, cognitive and neuropsychology) originally brought me to DC as an APA/AAAS S&T Policy Fellow. I’ve spent much of the past six years working to help address bias and barriers in healthcare, and in particular, help improve access to pain management services for women, BIPOC, and other populations whose chronic illness / disability / pain issues are disproportionately dismissed, ignored, and undertreated.

As a single income / household patient, I am incredibly grateful that DC has one of the few expanded Medicaid programs in the country that has allowed me to continue to get health coverage even when my conditions have prevented me from being able to maintain steady full-time employment. I'd love to be able to utilize my professional expertise and personal patient experiences to help improve healthcare and pain care access for vulnerable and underserved populations in the DMV area.

It has been my own research skills, training and persistence that has finally gotten me on the road to accurate diagnoses and treatment options after years of my symptoms being misdiagnosed and dismissed by medical professionals - often because they felt that I was too young, my conditions were too rare (read: underdiagnosed), or because my symptoms did not fit a textbook diagnosis - and it was easier to send me away than do a full workup for underlying physiological causes of my pain.

My medical conditions / disabilities prevent me from being able to write out a long story, but I'd be happy to share it via audio or alternative accessible formats with others who may be interested. I would love to find opportunities to collaborate and leverage the stories of other chronic illness / pain / disabled WOC, BIPOC, etc. in the DMV area and beyond.

My Motivation and Inspiration

As a single income / household patient, I am incredibly grateful that DC has one of the few expanded Medicaid programs in the country that has allowed me to continue to get health coverage even when my conditions have prevented me from being able to maintain steady full-time employment.

My own academic background in social / cognitive / neuro psych (with expertise in implicit bias) originally brought me to DC in 2015 as APA/AAAS S&T Policy Fellow, where I’ve spent much of these past six years working to help address bias and barriers in healthcare, and in particular, help improve access to pain management services for women, BIPOC, and other populations whose chronic illness / disability / pain issues are too often presumed to be primarily psychosomatic in nature.

I’d love to be able to utilize my privilege as someone with:

Higher medical literacy and knowledge of how to navigate the complexities of the medical system and insurance coverage for chronic illness

Relevant scientific expertise, policy, advocacy and consulting experience on best practices for: pain management, addressing implicit biases in the healthcare system, and improving doctor-patient communication and trust

To be able to partner / collaborate with interested healthcare professionals and advocates in the DC area more broadly to improve healthcare access and access to pain management treatments for some of DC’s most vulnerable and underserved populations.

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