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To the Senators Deciding On My Healthcare, From a Constituent With Rare Diseases


Dear Senators,

As someone living with an “invisible” chronic illness, I struggle daily to shower, buy food, and cook. Unable to work even part-time, I live in constant fear of no longer being able to manage on my own. Fortunately, I’m currently living abroad where a trip to the ER, along with ensuing hospitalization and including all necessary medications, procedures and other expenses, costs me only 10€/day, as opposed to nearly $1000 for just a few hours. But now it’s time to consider coming home, and I’ve been looking into what would await me.

I’ve been told that acquiring health insurance would no longer be an issue thanks to the Affordable Care Act. However, when I looked into it, I found the cheapest plan totaled nearly $10,000 per year for someone with zero income. I also discovered vital medications, not covered by health insurance and for which I currently pay less than 100€/month, would cost upward of $1200/month. Additionally, I’ve been informed the process for receiving disability for the type of rare diseases I have often takes several years to be approved, after multiple denials and despite legal representation.

Yet Article 25 of the Universal Declaration of Human Rights, “proclaimed by the United Nations General Assembly in Paris on 10 December 1948 as a common standard of achievements for all peoples and all nations” states:

Everyone has the right to a standard of living adequate for the health and well-being of himself and of his family, including food, clothing, housing and medical care and necessary social services, and the right to security in the event of unemployment, sickness, disability, widowhood, old age or other lack of livelihood in circumstances beyond his control.

In short, a system that continues to put the profits of the medical industry ahead of the health of its people is a violation of a universal human right. Additionally, because the resources exist, regardless of whether they’re obtainable or not, we don’t even have the option of applying for humanitarian aid abroad.

Although millions of American are still direly in need of truly accessible healthcare and social services, repealing the ACA without a competent alternative in place could strip millions of others of their coverage, while directly endangering the thousands who are alive today because of that coverage.

The “Patient Freedom Act,” proposing even higher deductibles and suggesting citizens finance their own medical expenses, is, in my opinion, most definitely not the way to go. As a country ranked last or near-last in nearly every measure of the quality of healthcare amongst industrialized nations, maybe it’s time we looked to some of our higher-ranking friends for advice.

I hope you understand and take these concerns seriously and will do everything in your power to ensure that your constituents, as well as all Americans, receive the vital care they need as quickly as possible.

Cordially,

Alésia Chevaleret

Editor’s note: This story reflects an individual’s experience and is not an endorsement from The Mighty. We believe in sharing a variety of perspectives from our community.

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Thinkstock photo by Ingram Publishing