Rare Daily Staff

The National Organization for Rare Disorders issued a statement opposing the Graham-Cassidy Health Care Plan to repeal and replace the Affordable Care Act saying it has “the potential to jeopardize access to care for millions of individuals with rare diseases.”

NORD, which separately joined 16 patient organization in a call for a bipartisan approach to healthcare reform, said the bill contains some of the same concerning aspects of two earlier Republican efforts to scrap the landmark healthcare legislation while containing additional provisions that would further allow insurers to discriminate against individuals with pre-existing conditions.

The Graham-Cassidy plan, put forward by Republican Senators Lindsey Graham of South Carolina, Bill Cassidy of Louisiana, Dean Heller of Nevada, and Ron Johnson of Wisconsin, would allow states that participate in the plan to opt out of key insurance market protections for individuals with pre-existing conditions. By allowing states to opt out of the Essential Health Benefits requirements of the Affordable Care Act, NORD said the plan would bring back annual and lifetime limits, limitless out-of-pocket costs, and provide wholly inadequate coverage.

The Graham-Cassidy plan would also allow states to opt out of community rating requirements, which NORD said would permitting insurers to discriminate against individuals with pre-existing conditions. “By allowing insurers to charge premiums based upon health status,” NORD said, “Graham-Cassidy would effectively price individuals with a rare disease out of the private insurance market.”

NORD noted that the plan would cut billions of dollars of Federal funding from the Medicaid program by instituting per capita caps. “Medicaid is a critical lifeline to millions of individuals with rare diseases across the United States,” NORD said. “Rare disease patients of all ages will be devastated, as states will likely be forced to cut eligibility, coverage, and services across the entire Medicaid population to compensate for the lost funding.”

The plan would also implement block grant funding to states. Using caps and block grant funding would disincentivize states from covering high-cost patients, adding orphan drugs to state formularies, or covering costly but needed medical care, NORD said. It noted the block grant formula within Graham-Cassidy is particularly disadvantageous to individuals with rare diseases living in states that provide more comprehensive coverage to Medicaid enrollees. States in the Northeast and on the West Coast could experience a particularly impactful cut in Federal Medicaid and health spending assistance, it said.

In addition, NORD noted that Graham-Cassidy would phase out Medicaid expansion by 2024 beginning in 2020. That, it said, would likely leave many individuals with rare diseases without health insurance.

“Instead of pursuing this legislation, we urge Senators to support the bi-partisan efforts ongoing within the Senate Health, Education, Labor, and Pensions Committee,” NORD said. “This effort holds the promise of stabilizing the private insurance market and expanding insurance options for individuals with rare diseases.”

September 19, 2017

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