SYS-CON MEDIA Authors: Elizabeth White, Yeshim Deniz, Glenn Rossman, Pat Romanski, Cynthia Dunlop

News Feed Item

Legislation Inspired by the "Boy in the Bubble" Passes Congress, Goes to President

WASHINGTON, Dec. 21, 2012 /PRNewswire-USNewswire/ -- The Immune Deficiency Foundation (IDF), the national patient organization dedicated to improving the lives of persons with primary immunodeficiency diseases (PIDD), is elated to announce that the Medicare IVIG Access Act (HR 1845) has passed in both the U.S. House of Representatives and Senate, allowing the legislation to be signed into law by the President.

In the U.S., there are approximately 250,000 people diagnosed with primary immunodeficiency disease, and thousands more go undetected. Primary immunodeficiency occurs in patients born with an immune system that either is absent or poorly functioning. There are more than 185 different types of PIDD, all caused by hereditary or genetic defects.

Current Medicare law contains a special provision for patients with primary immunodeficiency disease to receive home infusions of intravenous immunoglobulin (IVIG) under Medicare Part B. The Medicare IVIG Access Act, introduced by Representatives Kevin Brady (R-TX) and Doris Matsui (D-CA) in the House with companion legislation introduced by Senators John Kerry (D-MA) and Lamar Alexander (R-TN), responds to a quirk in the law whereby Medicare is only able to pay for the drug but not the costs associated with the infusion of IVIG in a patient at home, thus rendering the benefit useless and effectively denying IVIG home infusions. IDF believes that Medicare patients with PIDD should have the right to access all sites of care, including the right to be infused in the home setting when medically appropriate.

HR 1845 provides for a demonstration project to examine the benefits of providing coverage and payment for items and services necessary to administer IVIG in the home for patients with PIDD. Without treatment, everyday illnesses like the common cold can put these individuals at risk for infection and more serious complications. Fewer than 10,000 Medicare patients with PIDD receive immunoglobulin therapy on a regular basis to replace the antibodies that their bodies do not produce naturally, allowing most to live healthy lives. The Medicare IVIG Access Act was passed by a margin of 401-3 in the U.S. House of Representatives on Wednesday, December 19, 2012. HR 1845 then went to the Senate where it passed on Friday, December 21, 2012.

"We feel very strongly that this legislation is essential to ensure the ability of patients to access their lifesaving treatments in the most appropriate site of care," said Marcia Boyle, IDF President and Founder. "After so many years of working on this issue, finally Medicare beneficiaries with primary immunodeficiency diseases will receive appropriate treatment."

Congressman Brady, a member of House leadership who serves on the House Ways and Means Committee, has been an extraordinary leader in helping patients with PIDD by introducing four IVIG access bills over the past several years and raising the issues of the community throughout the legislative process. Mr. Brady pushed the legislation at the urging of Carole Ann Demaret, the mother of David Vetter, the young Shenandoah, Texas resident who passed away at age 12 after capturing the world's attention while living in a sterile environment at Texas Children's Hospital in Houston, becoming known around the world as the "boy in the bubble."

"I've been inspired by the courage of David Vetter and his mother, Carol Ann Demaret, who as a leader in the Immune Deficiency Foundation helped me understand how dangerous it is to send PIDD patients to hospitals and doctor's offices each month," said Congressman Brady, "For those most at risk, it's important that we continue to make healthcare more affordable and accessible. The bi-partisan support for this bill is a great example of what Congress can accomplish when the needs of patients are our first priority."

Congresswoman Matsui, a member of the House Energy and Commerce Committee, which is one of the key committees with jurisdiction over Medicare legislation, has been a leader on patient access to IVIG in the home for several years.

Senator Kerry holds a senior position in the Senate Finance Committee, the Senate Committee with jurisdiction over the Medicare IVIG Access Act. He has been the lead sponsor of Medicare IVIG Access legislation in the Senate for the past several years, and his leadership in the Senate has been unparalleled.   

Senator Alexander is a Member of the Senate Committee on Health, Education, Labor and Pensions and a Ranking Minority Member of the Senate Committee on Rules and Administration. He has been an advocate for the primary immunodeficiency community, introducing several bills to amend the Medicare IVIG Access issue.

For more information, visit http://primaryimmune.org/ivig-reimbursement. To see the video of Congressman Brady's remarks on the House Floor, go to http://primaryimmune.org/2012/12/medicare-ivig-access-act-introduced-on-the-u-s-house-of-representatives-floor

 

 

 

SOURCE Immune Deficiency Foundation

More Stories By PR Newswire

Copyright © 2007 PR Newswire. All rights reserved. Republication or redistribution of PRNewswire content is expressly prohibited without the prior written consent of PRNewswire. PRNewswire shall not be liable for any errors or delays in the content, or for any actions taken in reliance thereon.

@CloudExpo Stories
SYS-CON Events announced today that Verizon has been named "Gold Sponsor" of SYS-CON's 15th International Cloud Expo®, which will take place on November 4-6, 2014, at the Santa Clara Convention Center in Santa Clara, CA. Verizon Enterprise Solutions creates global connections that generate growth, drive business innovation and move society forward. With industry-specific solutions and a full range of global wholesale offerings provided over the company's secure mobility, cloud, strategic network...
SimpleECM is the only platform to offer a powerful combination of enterprise content management (ECM) services, capture solutions, and third-party business services providing simplified integrations and workflow development for solution providers. SimpleECM is opening the market to businesses of all sizes by reinventing the delivery of ECM services. Our APIs make the development of ECM services simple with the use of familiar technologies for a frictionless integration directly into web applicat...
Ixia develops amazing products so its customers can connect the world. Ixia helps its customers provide an always-on user experience through fast, secure delivery of dynamic connected technologies and services. Through actionable insights that accelerate and secure application and service delivery, Ixia's customers benefit from faster time to market, optimized application performance and higher-quality deployments.
Blue Box has closed a $10 million Series B financing. The round was led by a strategic investor and included participation from prior investors including Voyager Capital and Founders Collective, as well as the Blue Box executive team. This round follows a $4.3 million Series A closed in December of 2012 and led by Voyager Capital. In May of this year, the company announced general availability of its private cloud as a service offering, Blue Box Cloud. Since that release, the company has dem...
The only place to be June 9-11 is Cloud Expo & @ThingsExpo 2015 East at the Javits Center in New York City. Join us there as delegates from all over the world come to listen to and engage with speakers & sponsors from the leading Cloud Computing, IoT & Big Data companies. Cloud Expo & @ThingsExpo are the leading events covering the booming market of Cloud Computing, IoT & Big Data for the enterprise. Speakers from all over the world will be hand-picked for their ability to explore the economic...
Cloudwick, the leading big data DevOps service and solution provider to the Fortune 1000, announced Big Loop, its multi-vendor operations platform. Cloudwick Big Loop creates greater collaboration between Fortune 1000 IT staff, developers and their database management systems as well as big data vendors. This allows customers to comprehensively manage and oversee their entire infrastructure, which leads to more successful production cluster operations, and scale-out. Cloudwick Big Loop supports ...
To manage complex web services with lots of calls to the cloud, many businesses have invested in Application Performance Management (APM) and Network Performance Management (NPM) tools. Together APM and NPM tools are essential aids in improving a business’s infrastructure required to support an effective web experience… but they are missing a critical component – Internet visibility. Internet connectivity has always played a role in customer access to web presence, but in the past few years use...
SAP is delivering break-through innovation combined with fantastic user experience powered by the market-leading in-memory technology, SAP HANA. In his General Session at 15th Cloud Expo, Thorsten Leiduck, VP ISVs & Digital Commerce, SAP, will discuss how SAP and partners provide cloud and hybrid cloud solutions as well as real-time Big Data offerings that help companies of all sizes and industries run better. SAP launched an application challenge to award the most innovative SAP HANA and SAP ...
Software AG helps organizations transform into Digital Enterprises, so they can differentiate from competitors and better engage customers, partners and employees. Using the Software AG Suite, companies can close the gap between business and IT to create digital systems of differentiation that drive front-line agility. We offer four on-ramps to the Digital Enterprise: alignment through collaborative process analysis; transformation through portfolio management; agility through process automation...
What are the benefits of using an enterprise-grade orchestration platform? In their session at 15th Cloud Expo, Jeff Tegethoff, CEO of Appcore, and Kedar Poduri, Senior Director of Product Management at Citrix Systems, will take a closer look at the architectural design factors needed to support diverse workloads and how to run these workloads efficiently as a service provider. They will also discuss how to deploy private cloud environments in 15 minutes or less.
Headquartered in Santa Monica, California, Bitium was founded by Kriz and Erik Gustavson. The 1,500 cloud-based application using Bitium’s analytics, app management, and single sign-on services include bug trackers, customer service dashboards, Google Apps, and social networks. The firm states website administrators can do multiple tasks online without revealing passwords. Bitium’s advisors include Microsoft’s former CMO and the former senior vice president of strategy, the founder and CEO of Li...
The Transparent Cloud-computing Consortium (abbreviation: T-Cloud Consortium) will conduct research activities into changes in the computing model as a result of collaboration between "device" and "cloud" and the creation of new value and markets through organic data processing High speed and high quality networks, and dramatic improvements in computer processing capabilities, have greatly changed the nature of applications and made the storing and processing of data on the network commonplace. ...
StackIQ offers a comprehensive software suite that automates the deployment, provisioning, and management of Big Infrastructure. With StackIQ’s software, you can spin up fully configured big data clusters, quickly and consistently — from bare-metal up to the applications layer — and manage them efficiently. Our software’s modular architecture allows customers to integrate nearly any application with the StackIQ software stack.
Things are being built upon cloud foundations to transform organizations. This CEO Power Panel at 15th Cloud Expo, moderated by Roger Strukhoff, Cloud Expo and @ThingsExpo conference chair, will address the big issues involving these technologies and, more important, the results they will achieve. How important are public, private, and hybrid cloud to the enterprise? How does one define Big Data? And how is the IoT tying all this together?
The Internet of Things (IoT) is going to require a new way of thinking and of developing software for speed, security and innovation. This requires IT leaders to balance business as usual while anticipating for the next market and technology trends. Cloud provides the right IT asset portfolio to help today’s IT leaders manage the old and prepare for the new. Today the cloud conversation is evolving from private and public to hybrid. This session will provide use cases and insights to reinforce t...
TechCrunch reported that "Berlin-based relayr, maker of the WunderBar, an Internet of Things (IoT) hardware dev kit which resembles a chunky chocolate bar, has closed a $2.3 million seed round, from unnamed U.S. and Switzerland-based investors. The startup had previously raised a €250,000 friend and family round, and had been on track to close a €500,000 seed earlier this year — but received a higher funding offer from a different set of investors, which is the $2.3M round it’s reporting."...
The 3rd International Internet of @ThingsExpo, co-located with the 16th International Cloud Expo - to be held June 9-11, 2015, at the Javits Center in New York City, NY - announces that its Call for Papers is now open. The Internet of Things (IoT) is the biggest idea since the creation of the Worldwide Web more than 20 years ago.
The Industrial Internet revolution is now underway, enabled by connected machines and billions of devices that communicate and collaborate. The massive amounts of Big Data requiring real-time analysis is flooding legacy IT systems and giving way to cloud environments that can handle the unpredictable workloads. Yet many barriers remain until we can fully realize the opportunities and benefits from the convergence of machines and devices with Big Data and the cloud, including interoperability, da...
All major researchers estimate there will be tens of billions devices - computers, smartphones, tablets, and sensors - connected to the Internet by 2020. This number will continue to grow at a rapid pace for the next several decades. Over the summer Gartner released its much anticipated annual Hype Cycle report and the big news is that Internet of Things has now replaced Big Data as the most hyped technology. Indeed, we're hearing more and more about this fascinating new technological paradigm. ...
In his session at 15th Cloud Expo, Mark Hinkle, Senior Director, Open Source Solutions at Citrix Systems Inc., will provide overview of the open source software that can be used to deploy and manage a cloud computing environment. He will include information on storage, networking(e.g., OpenDaylight) and compute virtualization (Xen, KVM, LXC) and the orchestration(Apache CloudStack, OpenStack) of the three to build their own cloud services.