Patients sue HHS over right to appeal benefits denial
Medicare patients and consumer groups Tuesday filed suit against the Department of Health and Human Services, charging that the agency has denied them the right to appeal a decision by Medicare not to pay for a drug patients say is needed to treat their loss of sight.
"The issue here is that Medicare beneficiaries and beneficiary organizations should have a voice," said Grant Bagley, a former Health Care Financing Administration official who helped make Medicare coverage decisions under the Clinton administration.
Bagley now is a partner with Arnold & Porter, the law firm bringing the case against the government. The patients are suffering from occult age-related macular degeneration, a disease of the eye that eventually can lead to blindness.
They argue that the drug verteporfin is the standard of care for treatment for the disease. But Medicare decided not to pay for it and will not allow them to appeal-although Congress envisioned a coverage denial appeals process in a law known as the Benefits Improvement and Protection Act of 2000, setting a deadline of last fall for setting up the process. The patients have asked for relief from the courts to compel the agency to set up the appeals process.
"They ought to give these people at least a hearing … so they can save their sight," said Charles Crawford, executive director for the American Council of the Blind, a plaintiff in the case who spoke at a new conference announcing the case today.
Crawford said that while the risk of occult AMD is predictable, it could end up becoming a health crisis. The principle of the lawsuit, said Andrew Imparato, president and CEO of the American Association of People with Disabilities, is "not just for folks with macular degeneration, but for anyone who could benefit from new technology."
Imparato said Medicare may be looking at the short-term cost savings in denying coverage for the treatment, but urged the agency to look at the long-term implications for taxpayers when those struck by the disease can no longer work.
A Centers for Medicare and Medicaid Services spokesman indicated that a rulemaking to implement a coverage process is in the works, but nothing has been made public yet. "A lot of things in the statute need to be defined," the spokesman said. But Bagley questioned the need for a rule. "There are other mechanisms available," said Bagley.
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