Whether Repeal or Replace, Real People Are at the Center of the Policy Storm

For millions of Americans, the future of their health insurance is a matter of intense national debate. Whatever your position on the Affordable Care Act, what should be front and center is that real people will face real consequences in this policy debate — and people with pre-existing conditions are particularly vulnerable to shifts in insurability.

A warning bell has been sounding on this issue for the past several years. No longer able to redline people based on pre-existing conditions, insurers turned to a new tactic: refusing coverage to people who needed help in paying their premiums. In 2014, they tried (and failed) to drop HIV/AIDS patients who received charitable assistance through the Ryan White HIV/AIDS Program. More recently, they have targeted dialysis patients. What expensive condition is next? Cancer? Diabetes? Losing health insurance can be a death sentence for a patient with a chronic disease.

End-stage renal disease (ESRD, or kidney failure) often lands a substantial blow to a family’s income. Most ESRD patients cannot work or only work part-time. With high health care costs and diminished incomes, many ESRD patients must turn to charitable organizations for help, seeking assistance to pay for Medicare and Medigap premiums, as well as private commercial individual and group health plans.

Insurance companies have raised questions about whether or not low-income dialysis patients should be able to get private health insurance if they rely on charitable help to pay the bills. They put their lobbying muscle to work, and are playing a central role in deliberations about the future of the ACA. In a recent appearance before a Senate committee, the insurance industry’s chief lobbyist said low-income patients with costly conditions should not be able to choose private coverage if they are eligible for Medicare and Medicaid. Both programs are essential parts of the health care safety net, and the vast majority of dialysis patients are enrolled in one or the other. But not all ESRD patients are eligible for Medicare, and for some eligible patients, private insurance is a better option. It caps out-of-pocket costs, which Medicare does not, and more than 92,000 dialysis patients under the age of 65 live in states where insurers don’t have to offer Medigap insurance to cover those costs. Medicare covers only individuals, but many younger ESRD patients also need insurance for their family members.

Insurers have taken aggressive actions to drop ESRD patients who need help paying for their insurance. In December, at the insurance industry’s urging, the federal government issued a regulation that would have allowed insurers to deny coverage to low-income dialysis patients who receive charitable assistance. They wanted to make charitable assistance the new pre-existing condition.

Fortunately for dialysis patients, late last month a federal judge stood up for their right to choose the health insurance that best meets their needs — even if they need help paying their premiums. The court’s injunction prohibits the government from implementing the rule because it failed to follow proper regulatory procedures, and finds that “ESRD patients would also suffer irreparable injury” if the rule went into effect. The judge noted that some patients could lose access to their providers or lose their insurance coverage altogether, and said there are sound reasons that patients need access to private insurance.

Ultimately, whatever insurance plan comes out of the national debate, the challenges experienced by vulnerable populations with chronic diseases demand we keep firmly focused on the patients who desperately need help. Insurers will continue looking for loopholes to allow them to do what they did for many years — deny coverage to people with expensive pre-existing medical conditions and maximize their profits. We cannot let that happen.

The new Trump administration has indicated support for a ban on insurers refusing to cover people with pre-existing conditions. While the future of the ACA is still being settled, one way to keep that promise is to extend the same common-sense policy to all patients, including those who rely on charity to pay for their insurance. This will give low-income patients with chronic diseases the same choices other patients have and the peace of mind they deserve. We cannot be so wrapped up in policy, that we forget the people it is meant to serve.


LaVarne A. Burton is president and CEO of the American Kidney Fund, the nation’s leading nonprofit working on behalf of the 31 million Americans with kidney disease.

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