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Protecting Your Healthcare Coverage

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The new administration and Congress are re-examining the United States health insurance system with the goal of repealing the Affordable Care Act, and replacing it with a new system.

Before the Affordable Care Act was enacted in 2010, rare disease patients faced discriminatory insurance practices due to their pre-existing condition. Patients were denied coverage to vital therapies and specialists, and were often denied coverage altogether. Even when they could find coverage, insurers often put annual or lifetime benefit caps on their coverage, essentially removing all coverage once they hit a particular cost ceiling.
The Affordable Care Act banned these practices by forbidding insurers from discriminating against individuals with pre-existing conditions, outlawing annual and lifetime caps, and putting in place many other patient protections.
NORD is coordinating with rare disease patient organization partners on strategy, and conducting meetings on the Hill to ensure coverage protections for rare disease patients remain. Thank you for sharing your experience with us so that we can be best suited to advocate on your behalf.

September 26, 2017

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 ‘Graham-Cassidy’ 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.

September 25, 2017

Paul-swapna-liz-protectpatientsnowNORD 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. NORD was joined by two patient advocates in representation of the rare disease community.

September 25, 2017

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.

September 19, 2017

NORD issues a statement opposing the “Graham-Cassidy” plan to repeal and replace the Affordable Care Act (ACA). Read more.

September 18, 2017

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 and 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.

August 16, 2017

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 ( to see what proposals were included in today’s letter.

August 10, 2017

NORD signs on to coalition letter outlining how the Affordable Care Act can be strengthened by focusing on critical issues. Learn more.

July 28, 2017

NORD releases statement regarding the latest efforts to repeal and replace the Affordable Care Act. Learn more.

July 26, 2017

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 Principles for Health Coverage Reform.

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.

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.

Another rumored alternative from Senate leadership is a “skinny repeal” 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.

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 “death spiral” that collapses the market.

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.

This is why we need you to keep calling, tweeting, posting on Facebook, or however you best communicate with your Senator. Your Senator will decide exactly what to support or oppose in the next few days, and they need to hear your voice.

July 18, 2017

NORD signs on to coalition statement opposing straight repeal of the Affordable Care Act. More.

July 13, 2017

NORD Issues a Statement on Revised Draft of the BCRA. After reviewing the draft, we remain opposed to the legislation. More.

July 13, 2017

NORD signs on to coalition statement opposing revised draft of the BCRA. More.

July 12, 2017

NORD signs on to a coalition letter expressing concern about the Cruz Amendment to the BCRA. More.

June 27, 2017

NORD Issues Statement in Response to Delay in Consideration of the Senate Better Care Reconciliation Act. More.

June 22, 2017

NORD Issues Statement on Release of the Better Care Reconciliation Act, the revised version of the House Bill, American Health Care Act. More.

June 19, 2017

NORD has launched a nationwide campaign to urge the U.S. Senate to protect lifesaving health care for the millions of children and adults with rare diseases by opposing any legislation that would harm rare disease patients, including the American Health Care Act (AHCA). The campaign is titled “Days of Action to Protect Your Healthcare Coverage.”

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.

May 4, 2017

NORD Issues Statement on Today’s Passage of the American Health Care Act. More.

May 1, 2017

NORD Issues Statement Opposing ‘MacArthur Amendment’ the latest version of the American Health Care Act. More.

May 1, 2017

NORD joins coalition of leading patient advocacy groups to oppose the American Health Care Act. More.

March 24, 2017

Update (4:40 p.m.):  Thank you to everyone who called their members of Congress today!  We made our voices heard by asking our elected officials to vote “no” on the AHCA because of the negative impact it would have on the 30 million Americans with rare diseases.  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.

Urgent Call to Action (12:25 p.m.):  We need your help today!  The latest version of the American Health Care Act, the proposed replacement for Obamacare, removes protections against lifetime limits and annual caps. This would be devastating for individuals with rare diseases; medically necessary prescription drugs and medical care would go uncovered and patients could be denied coverage altogether.

The House is scheduled to vote TODAY.  Please take a minute to phone your congressperson and ask him or her to vote no! (click)

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.

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.


March 16, 2017

NORD’s policy team took to Facebook Live to 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.

Watch the archived video here.

March 14, 2017

CALL TO ACTION:  Take a minute to phone your legislators and tell Congress to protect our care!   The 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.

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.

Please take a minute to phone your legislators! (click)

March 8, 2017

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.”  Read NORD’s full statement here.


March 7, 2017

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 that we published last week. Our analysis and position statement will be released later this week.

March 6, 2017

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.  Learn more here.

February 28, 2017

To ensure that any ACA replacement plan will not harm rare disease patients, NORD has developed a principles document that outlines what the plan must do to protect the healthcare coverage of rare disease patients.

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.  We look forward to training advocates on these principles in Washington, D.C. this week for Rare Disease Day.

February 9, 2017

In efforts to protect the healthcare 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.

January 30, 2017

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.

Have you or someone you know been affected by annual or lifetime limits? If so, we ask that you please share these stories with us, so that we can better protect your coverage. Click here to share your experience with NORD.

January 10, 2017

Speaker of the House Paul Ryan has offered up high risk pools as a way to increase health coverage for individuals with pre-existing conditions.

Prior to the Affordable Care Act, 35 states utilized high risk pools as a way to provide subsidized health insurance to those who had otherwise been denied affordable coverage in the non-employer based market due to a pre-existing condition. Additionally, the federal government ran its own version of a high risk pool while the ACA was being implemented, known as the Pre-existing Condition Insurance Program (PCIP).

We are currently working to assess the impact of high risk pools, and determine the effect they might have on the rare disease community, but we need your help. Have you or someone you know had an experience with high risk pools? If so, please share it with us. We want to know how high risk pools have impacted your lives so that we in turn can be best suited to advocate on your behalf.