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Dear President Trump: Please Fight for Those With Lyme Disease

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Dear President Trump,

My name is Ina and I have chronic/late stage Lyme disease. For me and many of my friends, the new healthcare bill is scary – just as scary as the last three years have been while trying to treat this disease. See, Lyme disease isn’t recognized by many doctors in my city (Miami). Most “don’t believe it exists,” and let’s not get started on insurance. If I’m able to get insurance to cover one thing, it’s a miracle. And I pay over $500 a month just for my own insurance, which again, covers basically nothing.

Many Lyme patients are in serious debt. Many have lost their jobs, homes and even family and friends have turned away. Forget student loans… Imagine having student loan debt and then falling so ill that you physically can’t work and then having to go into medical debt as well. This is the United States of America. This should not be happening. I’m outraged and disappointed, but mostly I am scared.

I know it’s difficult to imagine this, but I ask you to please try.

Imagine that your child fell very ill all of a sudden. With no answers, no accurate testing and doctors saying he’s just looking for attention. I’m sure you would go to great lengths to find the right doctors to help him. But imagine you couldn’t afford to. Imagine having to quit your job because you are now his full time caretaker. He can’t walk, drive, make meals or even take a shower alone. He needs you, so you drop everything to be there with him. But the money starts getting tight eventually, spending $800+ out of pocket for lab tests that “aren’t covered by insurance.” Meeting with doctors that charge $500-$1000 just for a 20-minute appointment.

Imagine spending so much, you actually end up in debt. Major debt. Life-altering debt.

You don’t know what to do, the doctors aren’t helping and your son is just getting sicker by the day.

You finally decide to travel across the country to meet with a specialist, who, of course, isn’t covered by insurance. But you finally get some answers. It’s Lyme disease, and it’s late stage/chronic. You feel relief at having an answer but quickly realize that this is quite possibly one of the worst case scenarios. Especially now that money is obsolete and you can’t even pay your bills on time.

This is Lyme disease. There is no cure. There is no set treatment. There is no plan.

Lyme disease patients must be their own biggest advocate. We must do the research, plan out our treatment, filter through doctors until we find a Lyme-literate one…all for the hope of remission.

The last thing we should have to worry about is being in debt from medical expenses.

While this issue has been going on for way longer than you’ve been president, and I don’t place any of the blame of previous years on you or your administration (that just wouldn’t be fair), you have the ability to help now. You have the ability to transform the life of every single person in our beautiful country who is struggling with this disease. Over 329,000 people per year are diagnosed with Lyme disease. That’s not including the ones who are misdiagnosed due to lack of research and education.

I plead with you to please revise this bill. And I beg you to please, please fight for Lyme rights.

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Originally published: June 27, 2017
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