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September 26, 2017<\/h3>\n
Senate Leadership announced today that they will not proceed with a vote on the most recent attempt to repeal and replace the Affordable Care Act (ACA), known as the \u2018Graham-Cassidy\u2019 proposal. This proposal would have reduced Federal funding to the Medicaid program by hundreds of billions of dollars, in addition to undermining key protections for those with pre-existing conditions. However, thanks yet again to the collective action of thousands of dedicated rare disease patients, family members, caregivers, and engaged members of the community, access to health insurance through Medicaid and private insurance markets has been spared. Read the full statement from NORD here. NORD joined a coalition of 16 patient advocacy organizations in a statement once again outlining our opposition to the Graham-Cassidy proposal which was being considered by the Senate Finance Committee on this day. Read more.<\/a><\/p>\n NORD issues a statement\u00a0opposing the \u201cGraham-Cassidy\u201d plan to repeal and replace the Affordable Care Act (ACA). Read more.<\/a><\/p>\n NORD joined a coalition of 16 patient advocacy organizations in opposition of the Graham\/Cassidy Bill, the latest proposal to repeal the Affordable Care Act (ACA). We are urging senators to oppose this legislation as it, if enacted, will endanger access to quality and affordable healthcare for the patients that our organizations represent. Learn more in the joint statement here<\/a>\u00a0and stay tuned this week for important advocacy opportunities to make your voice heard by following NORD on social media and signing up for policy alerts here.<\/a><\/p>\n In order to continue correspondence with Congress in regards to healthcare reform, NORD sent a letter up to the Hill this afternoon outlining short-term stabilization proposals to improve the Affordable Care Act. Click here (https:\/\/bit.ly\/2i78yHT<\/a>) to see what proposals were included in today’s letter.<\/p>\n NORD signs on to coalition letter outlining how the Affordable Care Act can be strengthened by focusing on critical issues. Learn more.<\/p>\n NORD releases statement regarding the latest efforts to repeal and replace the Affordable Care Act. Learn more<\/a>.<\/p>\n Yesterday, the Senate voted 51 to 50 to move forward with debate on repealing and replacing the Affordable Care Act (ACA). This is concerning because every proposal put forward publicly so far does not adhere to our\u00a0Principles for Health Coverage Reform<\/a>.<\/p>\n<\/div>\n Following this vote to move forward, the Senate considered a version of the Better Care Reconciliation Act (BCRA), which failed by a 57 to 43 margin. As you remember, this bill would lower Medicaid funding by nearly $800 billion over the next ten years, rollback critically important protections for individuals with pre-existing conditions, and result in 22 million fewer individuals with health insurance by 2026. We thank the 57 Senators who chose to vote against this proposal.<\/p>\n Today, the Senate will continue considering alternatives to repeal the ACA. One of those alternatives is a bill to repeal the ACA without replacing it, a proposal that we are opposed to. This legislation would result in 32 million fewer individuals insured by 2026, and would abruptly end Medicaid expansion and exchange subsidies two years from enactment when the bill would take effect. The vote on this bill is not expected to succeed.<\/p>\n Another rumored alternative from Senate leadership is a \u201cskinny repeal\u201d that would be voted on by the end of the week. This bill would purportedly repeal only a handful of provisions within the ACA, most notably the individual mandate and employer mandate.<\/p>\n This proposal also does not adhere to our principles. Without an incentive for healthy individuals to sign up for health insurance, the private marketplaces will only attract those with complex and expensive medical conditions, causing premiums to rise drastically and potentially igniting an insurance \u201cdeath spiral\u201d that collapses the market.<\/p>\n These are the proposals on the table that we are aware of as of early this afternoon, and each would be harmful to the rare disease community.<\/p>\n This is why we need you to keep\u00a0calling<\/a>, tweeting, posting on Facebook, or however you best\u00a0communicate<\/a>\u00a0with your Senator. Your Senator will decide exactly what to support or oppose in the next few days, and they need to hear your voice.<\/p>\n<\/div>\n NORD signs on to coalition statement opposing straight repeal of the Affordable Care Act. More.<\/a><\/p>\n NORD signs on to a coalition letter expressing concern about the Cruz Amendment to the BCRA. More.<\/a><\/p>\n Over the next two weeks, NORD will provide daily advocacy opportunities for patients and families to make their voices heard while Senators deliberate on whether or not to support billions of dollars of cuts to Medicaid and an erosion of critical patient protections. The campaign will urge Senators to protect lifesaving healthcare for the millions of children and adults with rare diseases. Learn More.<\/a><\/strong><\/p>\n NORD Issues Statement on Today’s Passage of the American Health Care Act. More.<\/a><\/p>\n NORD Issues Statement Opposing ‘MacArthur Amendment’ the latest version of the American Health Care Act. More.<\/a><\/p>\n NORD joins coalition of leading patient advocacy groups to oppose the American Health Care Act. More.<\/a><\/p>\n<\/div>\n Update (4:40 p.m.): \u00a0Thank you to everyone who called their members of Congress today! \u00a0We made our voices heard by asking our elected officials to vote \u201cno\u201d on the AHCA because of the negative impact it would have on the 30 million Americans with rare diseases.\u00a0 As the health care system continues to evolve, NORD will be there to continue our work with legislators and patient advocates to stand up for the health care coverage of our patients.<\/p>\n Urgent Call to Action (12:25 p.m.): \u00a0We need your help today!\u00a0 The latest version of the American Health Care Act, the proposed replacement for Obamacare, removes protections against lifetime limits and annual caps.\u00a0This would be devastating for individuals with rare diseases<\/strong>; medically necessary prescription drugs and medical care would go uncovered and patients could be denied coverage altogether.<\/p>\n The House is scheduled to vote TODAY.\u00a0\u00a0Please take a minute to phone your congressperson and ask him or her to vote no! (click)<\/a>.\u00a0<\/strong><\/p>\n As background, last night, Congressional Republicans agreed to move forward with an amendment to the AHCA that would turn the determination of Essential Health Benefits over to the states. The Affordable Care Act eliminated annual and lifetime caps, but only for services that fell in the ten EHB categories. These categories are comprehensive and effectively eliminate these caps for medically necessary care.<\/p>\n If the EHBs are turned over to states, states could choose to allow insurers to once again set annual and lifetime caps on medically necessary services for rare disease patients by only mandating coverage of certain EHBs. We strongly oppose this measure as it is unacceptable to once again expose rare disease patients to these draconian caps.<\/p>\n <\/p>\n<\/div>\n<\/div>\n NORD’s policy team took to Facebook Live\u00a0to answer questions from the rare disease community on the Affordable Care Act and its proposed replacement, the American Health Care Act, in the context of NORD’s principles for health coverage reform.<\/p>\n Watch the archived video here.<\/a><\/strong><\/p>\n CALL TO ACTION: \u00a0Take a minute to phone your legislators and tell Congress to protect our care! \u00a0\u00a0The American Health Care Act, the proposed replacement for Obamacare, includes several provisions that may jeopardize care for rare disease patients. The bill weakens Medicaid by capping Federal contributions to states, likely leading to limits on care and coverage for Medicaid beneficiaries. The bill halts new sign ups for Medicaid expansion in 2020, and rolls back Federal Medicaid assistance for skilled care at home.<\/p>\n In addition, the bill replaces key incentives for the healthy to buy insurance with methods that could punish people for going uninsured for any reason, as well as dramatically limits financial assistance for low-income individuals looking to buy insurance.<\/p>\n Please take a minute to phone your legislators! (click)<\/a><\/b><\/p>\n<\/div>\n In advance of today’s hearings on the American Health Care Act (AHCA), NORD issued a statement in which we said, “We wish to emphasize our commitment to assisting Congress and the Administration as they navigate ACA repeal and replacement. We do not support the American Health Care Act at this time, but with continued dialogue and collaboration, we hope to be able to support legislation that improves the lives and wellbeing of rare disease patients.” \u00a0Read NORD’s full statement here<\/a>.<\/p>\n <\/p>\n<\/div>\n Yesterday evening, House Republicans released the American Health Care Act, their proposed replacement to the Affordable Care Act. NORD is in the process of analyzing the bill and assessing its effects on rare disease patients using our Principles for Healthcare Reform<\/a> that we published last week. Our analysis and position statement will be released later this week.<\/p>\n<\/div>\n As Congress begins debate on how to improve the nation’s health care system, NORD joined a coalition of major patient groups and outlined key elements believed to be necessary to provide affordable, accessible and adequate coverage for all Americans. We were proud to join these patient advocacy groups in outlining these overarching positions on health care reform. \u00a0Learn more here<\/a>.<\/p>\n To ensure that any ACA replacement plan will not harm rare disease patients,\u00a0NORD has developed a\u00a0principles document<\/a>\u00a0that outlines what the plan must do to protect the healthcare coverage of rare disease patients.<\/p>\n We will use the principles document to help educate legislators and in our meetings on Capitol Hill and hope fellow advocates will find the document useful. \u00a0We look forward to training advocates on these principles in Washington, D.C. this week for Rare Disease Day.<\/p>\n<\/div>\n In efforts to protect the\u00a0healthcare coverage of rare disease patients, NORD submitted a letter to Congress emphasizing the importance of rare disease patient insurance protections found in the Affordable Care Act. Read the full letter here<\/a>.<\/p>\n Annual and lifetime limits on coverage can deeply affect the rare disease community. Under the Affordable Care Act, health plans are prohibited from placing such limits on benefits. We at NORD are working to protect your coverage, and in doing so we would like to know more about the impact annual and lifetime limits had on your lives before the ACA was enacted.<\/p>\n
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\nSeptember 25, 2017<\/h3>\n
![\"paul-swapna-liz-protectpatientsnow\"](\"https:\/\/rarediseases.org\/wp-content\/uploads\/2017\/09\/paul-swapna-liz-protectpatientsnow-300x239.png\")
NORD joined a coalition of 16 patient advocacy organizations during a #ProtectPatientsNow press conference in an effort to send a message loud and clear to Congress that the Graham-Cassidy bill would hurt millions of patients across the nation who rely on Medicaid and pre-existing conditions protections. Watch the event here.<\/a>\u00a0NORD was joined by two patient advocates in representation of the rare disease community.<\/p>\n<\/h3>\n
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\nSeptember 25, 2017<\/h3>\n
\nSeptember 19, 2017<\/h3>\n
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\nJune 27, 2017<\/h3>\n
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\n<\/div>\nJune 19, 2017<\/h3>\n
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\nFebruary 28, 2017<\/h3>\n
\nFebruary 9, 2017<\/h3>\n
\nJanuary 30, 2017<\/h3>\n