Washington, D.C., July 13, 2017—The National Organization for Rare Disorders (NORD), the leading independent nonprofit organization representing the 30 million Americans with rare diseases, issued the following statement regarding the release of a revised draft of the Senate Leadership’s Better Care Reconciliation Act of 2017:
"Senate Leadership today released a revised draft of the Better Care Reconciliation Act of 2017 (BCRA), an amended version of the American Health Care Act (AHCA) that passed the House of Representatives in May.
We at NORD evaluated this revised draft in the same way that we evaluated all other preceding proposals, by comparing it to our Principles for Health Coverage Reform published in February.
In doing so we determined that this revised draft does nothing to ameliorate our concerns with the initial version of the BCRA, if anything it compounds our concerns. Therefore we will maintain our opposition to this legislation. Our concerns remain as follows:
First, this legislation fails to meet several of our principles by allowing the sale of health plans that do not adhere to the patient protections required under current law. Permitting insurers to offer plans that do not comply with patient protections alongside ones that do will create an insurance market that inherently discriminates against those with pre-existing conditions. The result will be a de-facto high risk pool with insufficient funding to prevent individuals from losing access to quality and affordable healthcare coverage. Premiums for those that are healthy and do not require comprehensive coverage will fall, while premiums for those with pre-existing conditions requiring plans with critical patient protections will rise exorbitantly; leading to insolvency, market instability, and irreparable harm.
Second, this revised BCRA draft will still cut hundreds of billions of dollars of Federal funding from the Medicaid program by instituting per capita caps and optional block grants. Medicaid is a critical lifeline to millions of individuals with rare diseases across the United States. 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.
Third, this BCRA draft fails to meet our principle on “maintain(ing) long-term coverage for rare disease patients in states that chose to expand eligibility under the ACA-funded Medicaid expansion.” This revised version of the BCRA would still phase out Medicaid expansion starting in 2020 and concluding in 2024, likely leaving many individuals with rare diseases without health insurance.
Finally, this revised BCRA does not adhere to our principles relating to prohibiting discrimination against individuals with pre-existing conditions. This draft would still bring back annual and lifetime limits, limitless out-of-pocket costs, and wholly inadequate coverage, by allowing states to determine their own Essential Health Benefits (EHB) through section 1332 waivers.
As the voice for the 30 million Americans with rare diseases, we are ready to work with Congress to address the issues outlined above. However, with the bill in its current form, we will continue to lead the rare disease community in opposition to enactment of the legislation as enactment would very likely result in millions of individuals with rare diseases losing healthcare coverage, access to orphan therapies and specialists, and protections against discriminatory insurance practices.
We urge both Republican and Democratic Senators to stand up for the rare disease community and reject the BCRA as written.”
In 2015 almost a dozen HSP Patient Advocacy Organizations from all over the world met in Madrid Spain to join forces to establish an international connection and resource to make sure a first rate, well established and impeccable HSP Patient Registry is set up. This will allow our next Clinical Trials to go forward smoothly and effectively. Good communication channels have also been established so as to allow for a smooth flow of information among scientists and organizations such as The Spastic Paraplegia Foundation.
When Clinical Trials begin in 2017 it may require as many people as possible for the Clinical Trial to be effective. If you have HSP or PLS, please add your information to our data base so we can keep you informed. We are missing a lot people's email address, so if you just want to add your email address. just enter your name, address and email and we'll add it. That way, we will be able to reach you quickly at a lower cost. Your privacy is very important to us. We will never share any of your information with any individual or company without your permission.
93 cents of every dollar you donate goes into our mission of research and service. 4 cents goes to fundraising and 3 cents goes to data management and general expenses. Our all volunteer Scientific Advisory Board makes sure that we are supporting only the very best research projects on the planet. The Spastic Paraplegia Foundation is an all volunteer run foundation. Our highly skilled staff, Scientific Advisory Board, Medical Advisors, CPA, Attorney, President, Board Members - all of us are working hard every day probono because we strongly believe in this cause. We know a cure is right within reach and we ask you to please join us in reaching by making a tax deductible donation.