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NORD Helps Improve the Lives of Rare Disease Patients

Posted by | 2:38pm on Friday, September 24, 2010

These legislative efforts will make a real difference in the lives of rare disease patients 

In a win for rare disease patients and families, the U.S. House of Representatives yesterday passed the Improving Access to Clinical Trials Act (I-ACT).  The bill, which passed the Senate August 5, goes now to the White House where President Obama is expected to sign it.

The National Organization for Rare Disorders (NORD) worked with the Cystic Fibrosis Foundation and other patient advocacy groups in support of this legislation. “This is a victory for the rare disease community,” said NORD President and CEO Peter L. Saltonstall.  “This legislation will support the development of new therapies by removing a barrier that might keep patients from participating in important research studies.”

The legislation changes the eligibility requirements for Social Security Supplemental Income (SSI) and Medicaid so that compensation of up to $2,000 for participating in clinical trials won’t be considered income in SSI and Medicaid determinations.

No More Lifetime Insurance Caps
Recently, NORD also successfully worked to end lifetime caps on insurance coverage. Many patients with rare diseases undergoing costly medical therapies hit the lifetime limits set by their insurers – which means their coverage goes away. Among the provisions of the new health law going into effect at the end of this month is a ban on lifetime limits in all health plans and insurance policies.

These legislative efforts will make a real difference in the lives of rare disease patients and families. It’s accomplishments like these that make me happy to donate my time to NORD’s board of directors. If you or anyone else you know is interested in helping out, send me an email. Rare Disease Day is just around the corner, on February 28, 2011.

(Image courtesy of Roberto_Ventre on Flickr)

About Wendy White

Since founding Siren Interactive in 1999, Wendy has been recognized as a thought leader at the intersection of niche pharma brands, patient empowerment and online marketing. Her vision for how the internet can facilitate interactions and provide crucial information that patients, caregivers and their healthcare providers previously struggled to find has propelled Siren to the forefront of relationship marketing for rare disorder therapies.

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