The ACA Repeal: What Ehlers-Danlos Patients Want You To Know

No country should be allowed to call itself an egalitarian, “first world” democracy in one breath, while blocking its most vulnerable citizens from such basic care in the next.

<strong>An American Flag blanket sewn by disability rights activists from the ADAPT group. The normal fifty stars are placed
An American Flag blanket sewn by disability rights activists from the ADAPT group. The normal fifty stars are placed in the shape of a person in a wheelchair.

For many people, the most immediate and terrifying part of a Trump presidency is the potential repeal of the Affordable Care Act, or ACA. As I have written elsewhere, those who will be most impacted by this repeal will be those already experiencing oppression based on factors like gender, race, religion, disability, and economic class.

As someone whose access to the ACA allows me to manage my diagnosis of Ehlers-Danlos Syndrome (EDS), an incurable, genetic collagen disorder, I wanted to know what the EDS community had to say about the potential repeal of the Affordable Care Act.

<strong>One common sign of EDS is skin hyperextensibility.  In this photo, a 16</strong>-<strong>year-old white male EDS pati
One common sign of EDS is skin hyperextensibility. In this photo, a 16-year-old white male EDS patient shows the stretchiness of his arm’s skin by pulling at it with his fingers.

Since collagen is found all throughout the body, EDS has the potential to wreak havoc on the joints, skin, muscles, organs, nervous system, heart, eyes, teeth, stomach, and more. EDS sufferers have a wide range of experiences and comorbid conditions. The medical treatment required is often complex and long-term, and the condition is very easily passed on to one’s children.

Yet what emerged from my discussions with EDS sufferers was not just a picture of EDS. It was a picture of what happens when people with any complex chronic illness face the prospect of losing healthcare. This picture was filled with diverse folks who deeply wished to be hardworking, stable members of society—not people callously living off the system, as many ideologues would have the public believe.

36-year-old Krishna Alexandra from New York City, who has Vascular EDS, explained that she is fighting to stay active as a professional in musical theater. “Without the ACA, I may never be able to get insurance again, unless I stop working and go onto disability,” she writes. “If I lose my insurance, I will probably die. It could be in the next couple of years [or] the next decade.”

Vascular EDS is considered the most severe type of the condition, with an average life expectancy of 48 years. A quarter of patients experience organ ruptures or other life-threatening conditions by the time they are twenty. Alexandra continues, “With proper medical care and new advancements in pharmaceuticals, I could live much longer...I have a lot of life left to live. I have a lot to contribute to the world. But without health insurance, my life will likely be cut short by an aneurysm or aortic dissection that could have been fixed with vascular surgery or new medications. I feel like I'm running out of time.”

Tina Majkowski from Brooklyn was an enthusiastic PhD student when she was diagnosed last year with EDS. The diagnosis and its accompanying injuries, dislocations, and severe pain sent the normally happy 31-year-old into the first depression of her life. Like many I spoke to, some of her biggest concerns revolved around being labeled with pre-existing conditions.

Majkowski explains, “A repeal of the ACA would be a clambering death sentence for me, as being placed in a pre-existing condition high risk pool would result in health insurance with deductibles and co-pays that would make the coverage accessible to me practically useless.” Learning to live with EDS was hard enough, but the bitter pill for her now is the potential loss of care. “I am consumed with panic…that I will never be able to access health insurance again, a panic that as my joints and muscles deteriorate, I will become a physical and financial burden to those I love…I don't think having EDS should mean that I deserve a death sentence when the only crime I have committed is having flawed genetics.”

<strong>Joint hypermobility is one of the major signs of most types of EDS. This diagram shows the motions of the Beighton Te
Joint hypermobility is one of the major signs of most types of EDS. This diagram shows the motions of the Beighton Test, which measures hypermobility in the knees, thumbs, little fingers, elbows, and back.

Several other people with EDS spoke to me anonymously about their fears. Many recognized the ACA’s imperfections and hoped for a better future system. But all repeatedly expressed they were at a loss for what to do without it. Here are a few of the things they wanted us to know:

“If I lost my health insurance because of this political proposal, I will actually die. I have a comorbid, systemic condition (Hypermobile EDS and Periodontal EDS) and I will not be able to eat soon because dental is not covered by insurance. I would have no screenings, tests, guidance, monitored medication oversight, or preventative treatment.”

“Basically, we are screwed if ACA is repealed and no coverage for pre-existing conditions is made available. We have three kids with EDS and POTS (Postural Orthostatic Tachycardia Syndrome). My husband worked full time until he was seriously injured in a hit and run accident...We are not able to afford his health plan if he is unable to go back to work soon. I work two part time jobs because we have to have flexibility in my schedule to take the kids to their many medical appointments.”

“One of the things that scares me most is losing eye care; EDS puts me at high risk for conditions like retinal detachments, which are treatable with fast care, but can cause blindness if untreated.”

“I'm in my early twenties and will likely be kicked off my mother's plan.”

“I was a small business owner with no insurance, paying out of pocket for a head injury, EDS, and narcolepsy. Getting Obamacare was like a miracle. It opened my life to do so much, freeing money up for life stuff instead of hundreds of dollars a month in medical bills.”

“I'm scared I won't be able to afford my cardiac medicine or get brain surgery I need. I'm scared that my children, one who is autistic and has an autoimmune disease, won't be able to stay in public school and get the type of care he needs there. I'm saddened I cannot get married because I'll lose my benefits.”

“I have EDS, and my pelvis and other joints were severely damaged during my last pregnancy and never healed after my child was born. I lost my place in my nurse practitioner master’s program because they wouldn't accommodate my need to use crutches or a wheelchair. So now our family is paying the student loans without the nurse practitioner salary. With my pre-existing condition, the ACA is what allows me to get insurance. Without health insurance, I wouldn't be able to afford migraine medication and physical therapy, much less things like an emergency room visits...I can be a better parent, spouse, and community member when my basic health needs are met. And don't just pity our family: If our goal as a society is to take care of everyone and save as much money as possible, then my being healthy enough to get back to school and finish my degree and be a practitioner and pay taxes on that level of income is what's best for the system.”

“[I’m concerned about] the loss of primary care and specialists, loss of preventative care that helps me keep ahead of the problems EDS causes, loss of pain medication management that keeps me functioning, and loss of continuity of care...”

“I remember I was still labelled as having preexisting conditions when I first started bleeding internally in a joint, then all the leukemia and hemophilia tests were done, then I had a surgery on my ankle to stop it from bleeding internally…my total medical bills in one year were $120K. I lost my life savings…After finally getting insurance through ACA I was able to finally see doctors and learn of my EDS diagnosis. If not for the ACA I still would not know. I would not know that I have several aneurysms in my internal carotid arteries [and] an aneurysm in my aorta…if I lose my ACA, I will have to stop all care and live a life with life threatening conditions and no medical care.”

“I'll lose everything…the unknown is awful. I have no idea where I'll be placed and what type of services I'll be able to receive.”

If you are as concerned about the repeal of the ACA as we are, please look up your elected officials here. Call and write them immediately. Encourage others to do the same. Raise awareness by writing letters to the editor and educating others. In your local communities, brainstorm ways to logistically and financially support those who will be most affected.

This is literally a question life and death. No country should be allowed to call itself an egalitarian, “first world” democracy in one breath while blocking its most vulnerable citizens from such basic care in the next.

All politicians who consider themselves humane and moral, regardless of party lines, must act now to ensure that the most vulnerable among us do not suffer and die because of ideology and money. As one anonymous EDS-er confided in me, imagining what they would say to politicians like Paul Ryan and Tom Price, “So, as you sit in your seat of power, and have your basic needs well taken care of, I want you to think very carefully about the citizens of this country as individuals, and consider the suffering you could inflict on many by simply trying to get an ideological agenda passed...We have entrusted you with the power to look out after all of us and we expect you to do that.”

<strong>People with a range of disabilities publicly protesting in front of a bus in the 1970s, before the Americans with Dis
People with a range of disabilities publicly protesting in front of a bus in the 1970s, before the Americans with Disabilities Act was passed. One man in a wheelchair has a sign that reads, “I can’t even get to the back of the bus.”
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