Imagine this: You're in your teens or 20s, there is a serious genetic condition that runs in your family, and you're worried that you may have it. You are currently healthy, but with this condition, serious symptoms can develop with little warning. Fortunately, you can find out if you're at risk with a few simple medical tests, including a genetic test. If the results are positive, your doctor will prescribe an inexpensive, effective drug that will drastically lower your chances of dying suddenly at a young age. Would you get tested?
In a society where a pre-existing condition doesn't make health insurance hopelessly unaffordable, most of us would answer yes—we'd get tested and possibly avoid major health problems. However, if the Republican-led Congress repeals the protections for people with pre-existing conditions that were put in place by the Obama-era Affordable Care Act, we will no longer live in such a society. That means that young, healthy people who are at risk for developing a treatable genetic disease will face an awful choice: Risk their health insurance to get a test that might save their life, or put off the test and hope that they don't get sick.
This scenario probably sounds extreme—unless something like Sudden Arrhythmia Death Syndromes runs in your family. SADS is a set of genetic heart conditions that can cause someone who appears healthy to literally drop dead, often in childhood or adolescence. While SADS are relatively rare in the general population, they account for a significant fraction of deaths in people under 35: 7 percent, according to one study. Those affected have abnormal heart rhythms that can lead to sudden cardiac arrest with few symptoms beforehand. Because SADS runs strongly in families, people who have a family history of the condition are encouraged to get tested. For those who test positive, there is good news: You can dramatically decrease your risk of death by taking safe and inexpensive drugs called beta-blockers.
To catch a genetic condition early and treat it before serious symptoms develop is a medical success story. It's something we'd like to see occur for more people and more diseases. But without insurance protections for pre-existing conditions, medical successes early in life set people up for trouble later. A person who receives preventative care to avoid a serious genetic disease is someone with a pre-existing condition, even if that person is otherwise healthy. Under current health-care law, this isn't a problem because insurers aren't allowed to charge people more for pre-existing conditions. But the current Republican health plan, passed in May by the House of Representatives, substantially weakens protections for those with pre-existing conditions. The plan allows states to opt out of the requirement that insurers not charge people different prices based on their health history. In those states, anyone with a pre-existing condition who doesn't maintain continuous coverage could be charged much higher rates for health insurance.
The Congressional Budget Office, in its newly published analysis of the House bill, estimates that more than one-third of Americans live in states that would probably opt out of at least some of the regulations protecting those with pre-existing conditions. People with pre-existing conditions who live in those states would "ultimately be unable to purchase comprehensive nongroup health insurance at premiums comparable to those under current law, if they could purchase it at all." Such people would have to go without insurance, or try to get into separate high-risk insurance pools that would also penalize people for pre-existing conditions.
The Republican plan will pressure many to make the unhealthy choice to delay crucial care, while also hindering medical progress.
You could argue that this isn't a big deal—people with pre-existing conditions should simply not let their health insurance lapse, and then they won't be charged more. But consider the future of a 20-year-old with a genetic heart condition. As she begins her career, she may not have an employer who offers health benefits; she's likely to switch jobs several times; and she may even be temporarily unemployed. Keeping continuous health insurance coverage in your early adult years is often challenging, and inevitably people with conditions like SADS will suffer—as they did before the Affordable Care Act's regulations on pre-existing conditions were implemented. One recent study found that people with SADS—and even their unaffected relatives—frequently faced higher premiums, or were rejected outright for insurance coverage. This is a strong incentive for people who are currently healthy, but also at risk for genetic disease, to put off any diagnosis as long as possible.
Such an incentive would not only harm people at risk for genetic disease, but would also hinder medical research. Right now, the list of genetic conditions like SADS—that is, conditions where at-risk individuals clearly benefit from early screening and treatment—is small, and consists mostly of rare hereditary cancer syndromes. But a major goal of medical research is to expand that list to include not only more genetic diseases, but also more common conditions. Researchers expect that genetic data, when combined with traditional medical information like family history and clinical tests, will greatly improve doctors' ability to identify and prevent disease in their patients. But without strong insurance protections for pre-existing conditions, this kind of genetics-based preventative approach to medicine would be harder to implement, and researchers developing new tests and treatments would struggle to recruit people for their studies. If you're currently healthy, why would you take part in a study that could leave you forever marked as someone with a pre-existing condition?
When it comes to genetic information alone, there are some legal protections not affected by the Republican repeal bill. GINA—the 2008 Genetic Information Nondiscrimination Act—prohibits insurers from using your genetic information or your family's medical history to deny or charge you more for health insurance. But in actual medical practice, GINA isn't enough because genetic information is always used in conjunction with other clinical tests. A positive genetic test for a congenital heart condition can't count as a pre-existing condition under GINA, but a genetic test followed by an abnormal EKG certainly could.
One of the main goals of biomedical research today is to use advances in genetics to make medical care more effective and less expensive. As that happens, a growing number of young, seemingly healthy people will discover that they have a genetic risk for a serious disease. Without strong insurance protections for pre-existing conditions, these people will have to weigh the benefits of early tests against the risk that they'll be priced out of the normal health insurance market—an outcome that undermines the advances in medical research that could help them. Republicans in Congress and the White House defend their health-care plan by arguing that healthy people shouldn't be burdened with the health-care costs of the seriously ill, especially those who are sick because they failed to make good choices about their health. But the Republican plan will pressure many to make the unhealthy choice to delay crucial care, while also burdening us all by hindering medical progress.