NORD is pleased to support the Patients’ Access to Treatments Act (PATA). This important bipartisan legislation introduced in the House of Representatives this week by Reps. David B. McKinley (R-WV) and Lois Capps (D-CA), will limit cost-sharing requirements for medications placed in a specialty tier and make innovative and necessary medications more accessible by reducing excessive out-of-pocket expenses.
Peter L. Saltonstall, President and CEO of NORD, said: “NORD supports legislation that would limit the cost-sharing of drugs placed on specialty tiers. Specialty tiers frequently adversely affect patients with rare diseases, as orphan products are often much more expensive than drugs that are more widely used.
“We have seen many cases where specialty tiers prices have limited patient access to medically necessary drugs and biologics. Untreated diseases not only affect patients directly and sometimes tragically, they also can be an expensive burden to the health care system. We look forward to working in support of this important legislative effort.” read more >
The final 2015 State House Event took place yesterday. Now that all of the numbers are in, take a look at (and share!) this year’s highlight reel & recap:Together, we planned and hosted 32 State House Events in capitol buildings across the U.S., up from last year’s 12 State House Events
With all of our efforts, Rare Disease Day continues to grow! Thank you to everyone who planned and attended events, joined the social media campaign, changed their profile photos, shared infographics, and got involved. As the official U.S. sponsor of Rare Disease Day, NORD thanks everyone who came together to support this truly community and group effort. Together, we are strong!
Keep the Momentum Going read more >
FDA Advances Medical Product Innovation
By: Margaret A. Hamburg, M.D.
As posted on March 17, 2015 by FDA Voice
On March 10, I had the pleasure of appearing with my colleague Dr. Francis Collins before the Senate Committee on Health, Education, Labor and Pensions to testify at a hearing on the subject of “Continuing America’s Leadership in Medical Innovation for Patients.” I thought the broader public health community would be interested in my oral testimony, and so I am sharing it here:
“Thank you, Mr. Chairman and Members of the Committee. I’m very pleased to be here today to discuss our shared goal of speeding innovative treatments to patients. FDA looks forward to working with you on this important effort.
As you have noted, this will be my last appearance before the Committee, as I am stepping down, but I want to thank you for your support over the years, and our constructive engagement with this committee to advance FDA’s public health mission.
I came to the Agency at a time of considerable uncertainty and change in the biomedical product industry; a time when dramatic advances in science and technology, some that my colleague Dr. Collins just outlined, demanded new models and approaches.
In turn, we took a very serious look at our role in advancing biomedical product innovation to ensure that we would be a gateway, not a barrier, to the delivery of better, safer and more effective treatments and cures. read more >
NORD’s Assistant Director of Public Policy, Paul Melmeyer, authored this great piece (below) in the March 2015 issue of the NCC Collaborator, the monthly publication from the National Coordinating Center for the Genetic Service Collaboratives (NCC). NCC focuses on bringing quality genetic and newborn screening services to local communities, and building bridges between public health, primary care/ Medical Home, geneticists and other specialists, and families and consumers. You can read the piece and March issue online here.
Since the passage of the Affordable Care Act in 2010 and the subsequent Supreme Court decision allowing states to decide whether to expand their Medicaid programs, decisions about healthcare coverage and quality standards for patients with rare diseases are increasingly being made at the state level. From public health initiatives, such as newborn screening programs, to insurance plan structure and coverage regulations, state governments play an integral role in facilitating the access of quality, affordable care for individuals with rare diseases.
For 31 years, the National Organization for Rare Disorders (NORD) has served as America’s leading patient advocacy organization for patients with rare diseases. Following the passage of the Orphan Drug Act in 1983, NORD has been involved in numerous Federal policy initiatives, including the Rare Diseases Act of 2002, the Affordable Care Act, and the Food and Drug Administration Safety and Innovation Act (FDASIA), among others.
Beyond our policy efforts, NORD represents over 220 organizations for individuals with rare diseases and provides education and coordination services for patients and their families. read more >
RareDisease Dialog is the official blog for the National Organization for Rare Disorders (NORD). NORD’s staff and friends will share information of interest to the entire rare disease community.
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