Think of it. To an insurance company, I look like a huge liability. Sure, I don’t have cancer right now, but an 87 percent chance of developing it does not make me a wanted bet. They know eventually they’re going to have to pay up big, and now that my genetics are in my file, I cannot hide that I am very likely to get very sick someday.
Right now, there is a 2008 law on the books called the Genetic Information Nondiscrimination Act (GINA). It protects family history and DNA tests and genetic indicators from health coverage discrimination. But only until you start developing symptoms.
Let me give you an example of what this means. Last year, I was doing cancer screenings every six months. I did a mammogram, a transvaginal ultrasound, and an MRI every year. So long as these tests came back negative, they were covered 100 percent. Then one day I had an MRI come back positive for some sort of tumor. On top of the very real scare that I now did have the cancer I’m supposed to get, that test, and all others after it, changed from “preventative screenings” to “diagnostics.” Under the insurance I held at the time, I still had 80 percent coverage. But if I’d had to switch to new insurance (which I have now had to do, just months later), it would have been considered a pre-existing condition, and the new insurance company would have been off the hook. And I would have been left to fend off my intraductal papilloma out of pocket.
Now, take that real-life example and pretend it had been cancer instead of a benign cyst. I would have been done for. Once you develop any symptoms at all, your genetic makeup becomes fair game for discrimination under the new administration’s healthcare ideas.
GINA also does not protect life insurance, disability, or long-term care, and we have already seen genetic testing being used in those areas to deny coverage.
BRCA is not the only thing we have to worry about. There are thousands of genetic conditions people carry around with them, and we now have the science to see them. Twenty states are challenging the ACA protections that allow patients to continue to be covered after they develop symptoms, and the Trump administration agrees with those challenges. This means that as soon as 2019, we could see insurance companies dropping coverage of people with pre-existing conditions or charging them higher premiums by far, if they even offer coverage at all.
To me, all of this meant that I had to get surgery immediately. I can’t have a pre-existing condition if I get rid of the parts of me that could get cancer before they do. It’s drastic. And it’s completely necessary. Otherwise, who knew how much coverage would be offered in the future? I couldn’t take the chance because I know we couldn’t pay out of pocket. I made the leap.
Without the marketplace, without the Obamacare staples in place, with each new attack of the Republican administration, my entire family will be left out to dry. Uninsured because we can’t afford it. Uninsurable because our genes have been marked as sick.
I say “we” and “our” because of my two girls. The insurance industry knows I have a BRCA mutation. They know it’s genetic and they know my girls have a 50 percent chance of having it. When the twins turn 18, will they have to be tested for their pre-existing condition? Will they be denied care even as teenagers?
As my twins grow up and have to navigate the world, I worry about their ability to receive medical care. I worry about them being sorted into the sick pools that are already forming, even though they aren’t technically sick. I worry the screenings and preventative care available to me may be too expensive for them as our insurance system unravels.
Imagine a life in which I have taken these preventative measures, and, because of this, I live cancer-free. Next, imagine that the insurance rules change and the system crumbles, and my children are not afforded the opportunity for preventative care. A future with fewer choices, not more. A future where people like my children may end up with a deadly disease I was able to prevent in myself.
Trumpcare forced me to chop my boobs off for my own safety. And Trumpcare may prevent my children from being able to do so.
In response to the current situation, ten Republican senators have just introduced a bill to preserve coverage of pre-existing conditions, should the courts side with the 20 states that are challenging the ACA this very month. Their hands were forced after the administration chose to rest on the side of profit over people. These senators introduced the “Ensuring Coverage for Patients with Pre-Existing Conditions Act” knowing the American people disapprove of getting rid of the protections by a margin of 36-64 percent. They know their jobs are on the line.
The best thing we can do about it as citizens and residents of this great country is to start calling them about it. We are still in a place where we can do something about the dehumanizing legislation coming down the pike. Let’s do it. It’s a whole lot easier than major invasive surgery, and it would make a much bigger difference to many more people.
Darlena Cunha is a freelance writer who frequently contributes to TIME, the Washington Post, and the Atlantic. She is also an adjunct professor at the University of Florida, where she teaches journalism.