RDLA’s September Legislative Webinar and In-Person Meeting Wednesday, September 20th, 2017 12:00 – 1:00 pm ET 1. The Haystack Project: Bridging Innovation and Patient Access, Saira Sultan, President and CEO, Connect 4 Strategies 2. The Orphan Drug Tax Credit, Paul Melmeyer, Director of Federal Policy, National Organization for Rare Disorders (NORD) 3. The California EXPERRT […]
About Sabah Bhatnagar
This author has yet to write their bio.Meanwhile lets just say that we are proud Sabah Bhatnagar contributed a whooping 11 entries.
Entries by Sabah Bhatnagar
The Senate is currently considering an Affordable Care Act (ACA) replacement bill co-sponsored by Senators Bill Cassidy (R-LA) and Lindsey Graham (R-SC). The National Organization for Rare Disorders (NORD) is asking patient advocates to email or call their Senators to oppose this “Graham-Cassidy” bill. The organization has outlined how this legislation could be detrimental for […]
The EveryLife Foundation asks you to take action to support the Orphan Product Extensions Now, Accelerating Cures and Treatments (OPEN ACT, H.R. 1223 / S. 1509). The OPEN ACT could bring hundreds of safe, effective, and affordable medicines to rare disease patients within the next several years by incentivizing drug makers to repurpose therapies for […]
On September 13th, the Rare Disease Congressional Caucus will host a briefing on “Curing Rare Disease: Policy and Regulation Needed for Emerging Technology.” This event will brief Members of Congress and staff on the need for policy and regulation that does not only keep pace in this new era of innovation, but also ensures that patients benefit the application of new technologies to safe and effective treatments.
The Senate has passed the Food and Drug Administration Reauthorization Act (FDARA), a legislative package that supplements FDA funding by requiring manufactures to pay user fees when submitting medical products for review in exchange for a timely approval process.
When Congress replaced the Sustainable Growth Rate (SGR) formula for how clinicians got their annual raises and bonuses (and penalties), they replaced it with a system where clinicians had to meet certain quality measures, make improvements to their practices, use technology to aid the patient experience, etc. Now kicking off it’s second year of this […]
The Alliance for a Stronger FDA is encouraging patient advocates to ask their legislators to support robust funding for the Food and Drug Administration (FDA). The FDA plays a critical role for rare disease patients because: The Agency ensures access to safe and effective medical products and is key to preserving public health. FDA-regulated industries […]
After the narrow defeat of Affordable Care Act replacement plans in the Senate, Senators have left for August recess without voting on other proposals. Sen. Alexander (R-TN), HELP Committee Chairman, along with Sen. Murray (D-WA), Ranking Minority, must bridge the chasm between viewpoints on opposite ends of the spectrum.
Rare New England (RNE) asks Massachusetts residents to call or email state legislators to ask for their support for HB3714, “An Act to Create a Rare Disease Advisory Council.” RNE has been collaborating with MA State Representative Paul Heroux, who has championed HB3714, since 2015. To learn more about the bill, click here.
Hospitals are paid today according to an antiquated system set up in 1983, the same year the Orphan Drug Act was passed to incentivize the development of orphan disease treatments. We’ve come a long way in getting those treatments, but nothing about hospital reimbursement has changed in all that time. The more extremely rare a […]