Published by Morning Consult

Six years ago, I and many others who have made our careers in health care policy cheered the Affordable Care Act being enacted into law. Though the ACA has proven to be a highly partisan issue, one important part of the law has consistently received wide support across the aisle — ending the practice of excluding a person’s “pre-existing condition” from health coverage.

I also celebrated the ACA because like 1 in 7 Americans, I have kidney disease. Almost half a million Americans who develop kidney failure — or End Stage Renal Disease — are dependent on dialysis to survive. Until the ACA’s passage, ESRD patients had few options for health coverage. Most had to avail themselves of a 1972 law making ESRD patients eligible for Medicare regardless of age or income and/or turned to Medicaid.

The ACA empowered our most vulnerable patients, including those with ESRD, to purchase private plans through the health insurance marketplace. This gives them a coverage option that many never had before — one with a modernized benefit structure, including a maximum out-of-pocket limit. Unfortunately, it now appears that the ACA’s benefits for ESRD patients may be short-lived for those who need support from charitable organizations to afford their coverage.

That the ACA could go off-limits to thousands of America’s sickest and most vulnerable, precisely because they can’t afford it without help, seems perverse on its face. But the law’s overseer, the U.S. Centers for Medicare and Medicaid Services, appears rapidly headed in that direction. In August, it requested public comment on the issue, strongly suggesting that patients would be better off in Medicare or Medicaid.

As the chief executive of Dialysis Patient Citizens, representing nearly 30,000 dialysis patients, I know that our members will always be grateful to have Medicare as an option, but many prefer to retain their private insurance because they face real disadvantages in Medicare. First, there is no coordination of care in fee-for-service Medicare, and ESRD patients are not permitted to enroll in Medicare Advantage managed care plans, which often offer such services. Second, Medicare’s 1965-vintage benefit structure, which pays approximately 80 percent of expenses, was designed for episodic acute care but leaves considerable out-of-pocket costs for those with chronic conditions such as ESRD. Worse still, ESRD patients under age 65 aren’t permitted in half the states to purchase supplemental Medigap insurance to cover the costs that traditional Medicare doesn’t.

Surveys of dialysis patients confirm a preference for private insurance plans. In July 2015, Dialysis Patient Citizens asked our members several questions from the federal Consumer Assessment of Healthcare Providers and Systems survey to gauge relative satisfaction with their coverage. We found that commercially-insured patients are more likely than Medicare beneficiaries to rate their coverage as the “best health insurance plan possible;” Medicare beneficiaries are more than twice as likely as private health plan members to report having trouble getting healthcare that they wanted or needed; and Medicare beneficiaries are more likely than private health plan members to report problems in getting their medication, difficulties in reaching someone on the phone to answer questions, and delays in receiving care or treatment.

The fact is that private coverage can be better than Medicare for ESRD patients, and we want patients to retain that choice. But, dialysis is so debilitating and time-consuming that many patients are unable to continue working — and they can’t afford a private plan without charitable premium support. Terminating their private plans would not only jeopardize the quality of their coverage and care — it would give insurers a disincentive to provide early intervention, transplantation and other services to kidney disease patients that they will soon unload into Medicare. That is why Congress, in 1981, mandated private coverage for dialysis for a minimum of 30 months.

The Obama administration is under enormous pressure to respond to the exit of some large insurers from the exchanges. A natural incentive is to improve the risk pool by removing chronically ill patients from exchange plans. But dropping sick patients is not the answer, and it goes against the bedrock reason the ACA was enacted — to protect against insurance discrimination based on pre-existing conditions.

We need to work together to ensure the exchanges are sustainable and attractive to insurers as well as to all consumers. Doing so will give kidney disease patients like me access to early detection and prevention that could slow the progression of the disease.

Hrant Jamgocian is CEO of Dialysis Patient Citizens, a Washington-based nationwide, nonprofit, patient-led organization with membership open only to dialysis and pre-dialysis patients and their families.

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