Welcome!

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.

Latest Stories
We are seeing a major migration of enterprises applications to the cloud. As cloud and business use of real time applications accelerate, legacy networks are no longer able to architecturally support cloud adoption and deliver the performance and security required by highly distributed enterprises. These outdated solutions have become more costly and complicated to implement, install, manage, and maintain.SD-WAN offers unlimited capabilities for accessing the benefits of the cloud and Internet. ...
Business professionals no longer wonder if they'll migrate to the cloud; it's now a matter of when. The cloud environment has proved to be a major force in transitioning to an agile business model that enables quick decisions and fast implementation that solidify customer relationships. And when the cloud is combined with the power of cognitive computing, it drives innovation and transformation that achieves astounding competitive advantage.
SYS-CON Events announced today that Silicon India has been named “Media Sponsor” of SYS-CON's 21st International Cloud Expo, which will take place on Oct 31 – Nov 2, 2017, at the Santa Clara Convention Center in Santa Clara, CA. Published in Silicon Valley, Silicon India magazine is the premiere platform for CIOs to discuss their innovative enterprise solutions and allows IT vendors to learn about new solutions that can help grow their business.
DXWorldEXPO LLC announced today that "IoT Now" was named media sponsor of CloudEXPO | DXWorldEXPO 2018 New York, which will take place on November 11-13, 2018 in New York City, NY. IoT Now explores the evolving opportunities and challenges facing CSPs, and it passes on some lessons learned from those who have taken the first steps in next-gen IoT services.
In this presentation, you will learn first hand what works and what doesn't while architecting and deploying OpenStack. Some of the topics will include:- best practices for creating repeatable deployments of OpenStack- multi-site considerations- how to customize OpenStack to integrate with your existing systems and security best practices.
SYS-CON Events announced today that CrowdReviews.com has been named “Media Sponsor” of SYS-CON's 22nd International Cloud Expo, which will take place on June 5–7, 2018, at the Javits Center in New York City, NY. CrowdReviews.com is a transparent online platform for determining which products and services are the best based on the opinion of the crowd. The crowd consists of Internet users that have experienced products and services first-hand and have an interest in letting other potential buye...
You want to start your DevOps journey but where do you begin? Do you say DevOps loudly 5 times while looking in the mirror and it suddenly appears? Do you hire someone? Do you upskill your existing team? Here are some tips to help support your DevOps transformation. Conor Delanbanque has been involved with building & scaling teams in the DevOps space globally. He is the Head of DevOps Practice at MThree Consulting, a global technology consultancy. Conor founded the Future of DevOps Thought Leade...
Everyone wants the rainbow - reduced IT costs, scalability, continuity, flexibility, manageability, and innovation. But in order to get to that collaboration rainbow, you need the cloud! In this presentation, we'll cover three areas: First - the rainbow of benefits from cloud collaboration. There are many different reasons why more and more companies and institutions are moving to the cloud. Benefits include: cost savings (reducing on-prem infrastructure, reducing data center foot print, redu...
Jo Peterson is VP of Cloud Services for Clarify360, a boutique sourcing and benchmarking consultancy focused on transforming technology into business advantage. Clarify360 provides custom, end-to-end solutions from a portfolio of more than 170 suppliers globally. As an engineer, Jo sources net new technology footprints, and is an expert at optimizing and benchmarking existing environments focusing on Cloud Enablement and Optimization. She and her team work with clients on Cloud Discovery, Cloud ...
Founded in 2000, Chetu Inc. is a global provider of customized software development solutions and IT staff augmentation services for software technology providers. By providing clients with unparalleled niche technology expertise and industry experience, Chetu has become the premiere long-term, back-end software development partner for start-ups, SMBs, and Fortune 500 companies. Chetu is headquartered in Plantation, Florida, with thirteen offices throughout the U.S. and abroad.
SYS-CON Events announced today that DatacenterDynamics has been named “Media Sponsor” of SYS-CON's 18th International Cloud Expo, which will take place on June 7–9, 2016, at the Javits Center in New York City, NY. DatacenterDynamics is a brand of DCD Group, a global B2B media and publishing company that develops products to help senior professionals in the world's most ICT dependent organizations make risk-based infrastructure and capacity decisions.
The technologies behind big data and cloud computing are converging quickly, offering businesses new capabilities for fast, easy, wide-ranging access to data. However, to capitalize on the cost-efficiencies and time-to-value opportunities of analytics in the cloud, big data and cloud technologies must be integrated and managed properly. Pythian's Director of Big Data and Data Science, Danil Zburivsky will explore: The main technology components and best practices being deployed to take advantage...
DXWorldEXPO LLC announced today that All in Mobile, a mobile app development company from Poland, will exhibit at the 22nd International CloudEXPO | DXWorldEXPO. All In Mobile is a mobile app development company from Poland. Since 2014, they maintain passion for developing mobile applications for enterprises and startups worldwide.
Nicolas Fierro is CEO of MIMIR Blockchain Solutions. He is a programmer, technologist, and operations dev who has worked with Ethereum and blockchain since 2014. His knowledge in blockchain dates to when he performed dev ops services to the Ethereum Foundation as one the privileged few developers to work with the original core team in Switzerland.
Most DevOps journeys involve several phases of maturity. Research shows that the inflection point where organizations begin to see maximum value is when they implement tight integration deploying their code to their infrastructure. Success at this level is the last barrier to at-will deployment. Storage, for instance, is more capable than where we read and write data. In his session at @DevOpsSummit at 20th Cloud Expo, Josh Atwell, a Developer Advocate for NetApp, will discuss the role and value...