Advocacy Win! Disability Partnerships Make a Difference for People with ME

The National Institutes of Health (NIH) announced they will designate people with disabilities as a population with health disparities. This is a win that could have a large impact on people with ME and the millions of people with disabilities across the country. 

“This designation recognizes the importance and need for research advances to improve our understanding of the complexities leading to disparate health outcomes and multilevel interventions,” said Dr. Pérez-Stable. “Toward this effort,National Institutes on Minority Health and Health Disparities and other NIH institutes launched a new research program to better understand the health disparities faced by people with disabilities who are also part of other populations designated as having health disparities.”

We fought for this because the National Institutes on Minority Health and Health Disparities previously rejected the recommendation to recognize people with disabilities as a “health disparity population” within the NIH. 

The letter, co-authored by Dr. Bonnielin Swenor, Director of The Johns Hopkins Disability Health Research Center, and Dr. Jae Kennedy, Professor of Community and Behavioral Health, WSU College of Medicine, explained the value of this proposal:

“Designating people with disabilities as an NIH health disparity population is more than a semantic exercise – centers, offices, and institutes across the NIH use these categories to develop research concepts and FOAs, particularly in the domain of health disparities research. They are also used to target training support and development funds for NIH employees and extramural grantees. Including people with disabilities is therefore essential to the broader health equity goals of the NIH and the US Department of Health and Human Services.”

Many grants at NIH focus on “health disparities populations”. More than one disability researcher has met with a program officer at NIH to see if their research idea was eligible for a specific grant, only to be turned away because their research was on disability– until now.

HHS Secretary Xavier Becerra stated, “Research to understand the barriers and unmet needs faced by people with disabilities, and to develop effective interventions to address them, is needed. This designation will help to improve access to healthcare and health outcomes for all people.” For us, that means that the NIH will be faced with examining the barriers people with ME have faced for decades. 

#MEAction signed on to support this effort brought forth by disability rights groups. This type of win is why aligning with our broader disability community has a positive impact for all. 

Thank you for all of you who continue to support #MEAction, disability advocacy, and our broader chronic illness community. This gives us more power to fight for people with ME each and every day. 

Facebook
Twitter
WhatsApp
Email

Leave a Comment

Your email address will not be published. Required fields are marked *

Latest News

Graphic of yellow canary over black and white photo of a coal mine. Text reads "Canary Corps"

CANARY CORPS – Alison’s Story

Have you registered yet to join us this Wednesday, December 6th at 4pm ET / 1pm PT for a community presentation introducing the Canary Corps program? Ahead of Wednesday’s event we wanted to share with you Alison’s story. Alison Sbrana will be co-presenting this event, and much of the design of Canary Corps has been

Read More »
A rectangle image with a blueish/purple background. The words, "A Year of Exciting Medical Education Achievements" is in white font on the left hand side with the #MEAction logo underneath. On the righthand side is an image of Jaime Seltzer with a step and repeat and poster at the SDMI conference.

A Year of Exciting Medical Education Achievements

A year ago, we were proud to announce that #MEAction and Mayo Clinic Rochester had won a grant for diagnostic improvement, with Ravindra Ganesh, and Stephanie Grach, and I on the grant as co-investigators. Our project, Improving Diagnostic Accuracy of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Through Implementation of an Enhanced Education Protocol and Care Process Model

Read More »
a light orange rectangle with a burnt orange outline. in the box, there are orange flag garlands hanging in both top corners with orange confetti in the middle and at the top. in the bottom corners fall leaves. in the middle of the box the word, "OUR BOLDEST THANKS" in burnt orange. the #MEAction logo at the bottom.

#MEAction Shares Our Thanks for Your BOLD ACTIONS

During this time of thankfulness and gratitude, #MEAction staff wants to share what BOLD ACTIONS we are thankful our volunteers and community have taken throughout the year. We thought we could reflect together on all that we have accomplished this year and how every single one of us is important in this powerful community. A

Read More »