Twenty-seven percent of people under 65 have a pre-existing condition that would make them uninsurable without the Affordable Care Act (the ACA, or “ObamaCare”) and they’ve been talking about it using the hashtag the27percent.

Not sure if you are one of those people? The Kaiser Family Foundation just released a partial list of conditions that used to make people uninsurable in the private individual market. They included cancer, diabetes, epilepsy, multiple sclerosis, paralysis, Parkinson’s disease, pregnancy, and sleep apnea.

The situation for people with pre-existing conditions was one of the most serious barriers in our pre-ACA health care system and was a major reason we needed health reform. New York had a state law before the ACA that prevented the most serious consequences, and that law will likely take effect again if the ACA is repealed. So New Yorkers don’t have to fear outright denials of coverage. However, our law allowed a year-long waiting period in which insurance companies could exclude coverage for any treatment related to pre-existing conditions. That means that if you had something like diabetes or even cancer, you would have to pay for that care on your own for an entire year, even when you had insurance.

There’s another problem with reverting back to our state law – it ended up undermining our individual market because it was not coupled with an individual mandate or other incentives for healthy people to buy insurance, such as premium subsidies and tax credits. It costs insurance companies more money to cover people with pre-existing conditions. They need something like the mandate or premium assistance to encourage enough healthy customers into their market.

Some of the people who are most opposed to the ACA have said that they’d like to keep the pre-existing condition protection as is and just remove some parts of the law. The parts slated for immediate repeal include the individual mandate and the subsidies that help people pay their premiums based on income. In New York, we know that won’t work.

So read people’s stories, and consider sharing yours. And don’t accept simplistic assurances on the pre-existing conditions issue. ACA-opponents have promised to immediately repeal the mandate and funding for things like premium subsidies that make the pre-existing condition protection feasible. Opponents have had years to come up with a strategy to address this issue that is different from the ACA, avoids major disruptions to the market, and does not place unfair burdens on people experiencing health problems. It’s past time for them to reveal some details.

While Congress was debating and drafting the ACA, HCFANY gathered stories about the hardships experienced by New Yorkers with no coverage at all or coverage that failed when it was most needed. Advocates in other states did the same, and those stories helped educate decision-makers about the need for health care reform.

We need to hear those stories again. HCFANY created a story form to help you tell yours. If you are unsure how the law has affected you, the story form lists some examples. One of the examples is having health insurance, which we know happened for millions of New Yorkers because of the ACA. Maybe you are a childless adult who became eligible for Medicaid for the first time. Maybe you could afford insurance again because you got a tax credit, or you were able to stay on your parents’ insurance for longer.

It is also likely that you have better insurance today than was commonly available before the ACA. Insurance companies are no longer allowed to charge you for check-ups or screenings that help people catch problems early on. They aren’t allowed to exclude pre-natal care or prescriptions, as they commonly did before the ACA. Insurance companies here in New York weren’t allowed to exclude you from purchasing a plan because of pre-existing conditions. But they were allowed to enforce waiting periods where you paid a premium but could not receive needed care for your pre-existing condition.

Tell us what this law has meant to you and your family. Going backwards to the days before the ACA should not be on the table – but it is. The best thing we can do right now is share our honest stories about why we passed the ACA in the first place.