We’re Doing Everything Right—and Still Can’t Afford to Stay Healthy

📣 Storytelling has and will always be a critical part of organizing; we can’t build community without it! Reproductive Freedom for All is building a team of storytellers—volunteers just like you—to amplify the message at the core of our work: that freedom is for everybody— and we want you with us.

For families with chronic conditions, the “freedom” to change insurance often means losing access to care altogether.

I’m Lottie, a proud volunteer with Reproductive Freedom for All. I live in California’s 39th District, and like too many others, my family is fighting to stay healthy in a system that keeps making it harder and more expensive.

I have a rare genetic disorder called Hypermobility Ehlers-Danlos Syndrome (EDS) and am married to a Type 1 diabetic who is in renal failure.

What we’re going through isn’t unique; families across the country are being priced out of basic care. And politicians threatening to cut health care funding would make it even worse.

Here’s what that looks like for us.

The Cost of Staying Alive

“These numbers aren’t luxuries or elective care. They’re what it takes for us to stay alive and live with dignity.”

When my husband was laid off in July, we lost our employer-sponsored health insurance. To keep coverage, we had to switch to COBRA—which costs us $1,830 every month—just to make sure we can continue to get the care we need until his new job and benefits start.

Even with insurance, our average monthly cost for prescriptions is $500, and specialist visits run about $403. Recently, my husband needed eye surgery to prevent blindness and the out-of-pocket cost, even with insurance, was over $1,000.

These numbers aren’t luxuries or elective care. They’re what it takes for us to stay alive and live with dignity. And this is what more and more families are facing as health care costs keep rising.

When Changing Insurance Isn’t an Option

Earlier this year, my husband became eligible for the kidney transplant list. To qualify, he needs to see multiple specialists and undergo extensive testing.

We explored switching to a more affordable insurance plan, but we were warned that changing plans could force him to restart all his authorizations, including approval for peritoneal dialysis, which he thankfully hasn’t needed yet.

For families with chronic conditions, the “freedom” to change insurance often means losing access to care altogether.

Living With Ehlers-Danlos Syndrome

“If the government continues to threaten health care cuts, millions more Americans will find themselves without the care they need, or even without a home.”

My condition, EDS, affects everything from my ligaments and tendons to my veins and organs. It causes joint instability, tissue fragility, poor healing, and organ prolapse.

There’s no cure, only management and treatment.

Finding doctors who understand EDS is a constant struggle. When new providers learn my diagnosis, many refuse to take EDS patients. Even doctors who once treated me have turned me away.

One of my biggest challenges has been finding an OB-GYN who knows how to care for EDS patients. Since my diagnosis in 2018, I haven’t been able to find a gynecologist who can perform my annual exams safely. That gap in care is frightening and unacceptable.

We’re Not Alone

My husband works hard. I worked up until my disability made it impossible, and together we’ve always tried to save for our future. But between medical costs and two layoffs in three years, our savings are gone.

We know we’re not the only ones. Friends, neighbors, and family are all facing impossible choices between paying bills and staying healthy.

If the government continues to threaten health care cuts, millions more Americans will find themselves without the care they need, or even without a home.

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Why We’re Speaking Out

Every family deserves affordable, reliable health care and no one should have to choose between survival and stability.

That’s why I’m sharing our story. This fight is about more than one family or one diagnosis —it’s about protecting everyone’s right to live healthy, dignified lives.

Take action with me and join the team here at Repro for All!