I am one of the millions of people across the country who have benefited from the Patient Protection and Affordable Care Act (ACA). I have significant medical costs as a result of living with a rare genetic neurometabolic disorder, a primary immunodeficiency disease, Postural Orthostatic Tachycardia Syndrome, and a genetic condition called Ehlers-Danlos Syndrome. My medical costs are significant; I take over a dozen medications, eat a specialized medical food, use a power assist wheelchair, and have visited with over 20 doctors in just the past three years.
I depend on accessible, equitable, and affordable medical care to live.
Prior to the passage of the ACA, I could be denied health coverage due to having pre-existing conditions or terminated from coverage due from reaching a lifetime limit despite doing everything in my life, as some legislators would say, “right.” I have a Master’s degree, work a full-time job, volunteer, follow all of the directions of my doctors, live a healthy lifestyle, and have professional experience in health policy that helps me make informed decisions about my health care and coverage.
The ACA allowed me to attend graduate school during the policy rollout and access medical care without filing for bankruptcy. Now, as a young adult, it ensures that I can afford the health care that allows me to work and contribute to my community. The ACA not only allows me to physically survive, but thrive while living with complex medical conditions.
Although the ACA has saved and changed the lives of millions of Americans, people across the political spectrum can agree that the bill is not the final answer to ensuring that every single U.S. resident has quality, affordable, and accessible health care. However, on Thursday, May 4, House Republicans approved the American Health Care Act (AHCA), which deceptively claims to improve the shortcomings of the ACA, but in reality will increase inequality in our healthcare system. In particular, the bill could have devastating consequences for the disabled and chronically ill communities. The bill would change the Medicaid funding structure and cut Medicaid spending, provide state waivers that could eliminate required coverage and deny or increase costs for people with pre-existing conditions, and impact tax credits for insurance premiums. Although many unknowns remain with the pending bill, I do know that it could leave me and countless others who have high medical costs either underinsured or uninsured.
I beg the Senate to vote NO on the AHCA. The AHCA would be a death sentence for disabled and chronically ill individuals. We are valuable. We contribute to our communities. We love our families and friends, and they love us. Without affordable, quality coverage, the lives we lead would be at stake.
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