Committee on Energy and Commerce

Fred Upton

Kentucky Angel’s Dance Moves Go Viral

2016/04/29

A seven-year-old angel from Louisville, Kentucky, is capturing the hearts of millions with her dance moves. Meet Audrey Nethery, who has made a name for herself as she sings karaoke, dances, and works out at Zumba classes. Audrey tells Kentucky’s WLKY, "Well I have DBA and I'm not like others, I'm smaller than others, I talk different than others.” DBA, Diamond Blackfan Anemia, is a bone marrow failure disorder, where the body doesn't produce red blood cells and as WLKY reports, “treatment ranges from transfusions, to steroids, to a bone marrow transplant.” Standing at just 2 feet, 5 inches tall, she also has osteoporosis, which is a side effect of the steroids that she must take. Dancing has been an outlet for her to stay active. [[{"fid":"807","view_mode":"full","fields":{"format":"full","field_file_image_alt_text[und][0][value]":"Image 1","field_file_image_title_text[und][0][value]":"Image 1"},"type":"media","link_text":null,"attributes":{"alt":"Image 1","title":"Image 1","height":"150","width":"252","class":"media-element file-full"}}]] Her moves have gone viral and recently caught the attention of TV celebrity Rachel Ray, who had Audrey as a guest on her talk show, “Rachel.” In addition to raising awareness of DBA, Audrey had the opportunity to dance for a national TV audience. [[{"fid":"808","view_mode":"full","fields":{"format":"full","field_file_image_alt_text[und][0][value]":"Image 2","field_file_image_title_text[und][0][value]":"Image 2"},"type":"media","link_text":null,"attributes":{"alt":"Image 2","title":"Image 2","height":"192","width":"351","class":"media-element file-full"}}]] Watch Audrey dance with the Brooklynettes dancers on “Rachel” HERE When asked by WLKY what message Audrey had for other kids with rare diseases, she said, "[B]e strong, and we'll try to find a cure." Precision medicine is a critical component to treating patients with rare diseases. H.R. 6, the 21st Century Cures Act, ensures medicine is tailored to the patient’s needs. Paving the way for #CuresNow are kids like Audrey, who just want to find a cure. And together, we’re united in making that a reality on the #Path2Cures. [[{"fid":"809","view_mode":"full","fields":{"format":"full","field_file_image_alt_text[und][0][value]":"Image 3","field_file_image_title_text[und][0][value]":"Image 3"},"type":"media","link_text":null,"attributes":{"alt":"Image 3","title":"Image 3","height":"105","width":"257","class":"media-element file-full"}}]] Louisville girl goes viral, seeks to raise awareness of rare disease [[{"fid":"810","view_mode":"full","fields":{"format":"full","field_file_image_alt_text[und][0][value]":"Image 4","field_file_image_title_text[und][0][value]":"Image 4"},"type":"media","link_text":null,"attributes":{"alt":"Image 4","title":"Image 4","height":"195","width":"350","class":"media-element file-full"}}]] Watch WLKY’s report on Audrey HERE   ### Read More

Upton, Brady Press CMS on Rule Promoting One-Size-Fits-All Health Benefits

2016/04/29

WASHINGTON, D.C. – House Energy and Commerce Chairman Fred Upton (R-MI), House Ways and Means Committee Chairman Kevin Brady (R-TX), and 32 Republican committee Members sent a letter to Centers for Medicare and Medicaid Services (CMS) Acting Administrator Andy Slavitt regarding a new agency rule that will affect how health care plans are designed and sold on the Obamacare exchange. In the letter, the committee Members express concern that the rule will harm patients by increasing the government’s role in health care, limiting choices, and stifling innovation: “We are concerned CMS’s policies will continue a pattern of allowing Washington bureaucrats to pick winners and losers by propping up plans that meet arbitrary requirements, instead of preserving choice and encouraging consumers to select plans that will best meet their unique needs.” Click here to view the letter.  ### Read More

Letter to CMS Regarding Qualified Health Plans Under the PPACA

2016/04/29

Excerpt: “We are concerned CMS’s policies will continue a pattern of allowing Washington bureaucrats to pick winners and losers by propping up plans that meet arbitrary requirements, instead of preserving choice and encouraging consumers to select plans that will best meet their unique needs.” To read the letter, click here. Read More

#DisruptFTC: More Bills Unveiled to Address Emerging Issues for the 21st Century to Keep Innovation First

2016/04/29

WASHINGTON, DC – On the heels of announcing six bills to bring needed reforms to the Federal Trade Commission (FTC), the Subcommittee on Commerce, Manufacturing, and Trade, chaired by Rep. Michael C. Burgess, M.D. (R-TX), today unveiled five more bills authored by subcommittee members to spur innovation and address emerging issues for the 21st century. Through The Disrupter Series, members engaged with thought leaders and industry experts about the marketplace of tomorrow that led to the development of the 11 targeted reforms. “Our legislative package has been carefully crafted to bring innovative friendly reform to the FTC. It’s important the commission remain transparent to help business grow and thrive, all the while fulfilling its mission to protect consumers. We’ve assembled 11 thoughtful bills that put a premium on innovation and will ensure the FTC is modernizing for the 21st century economy.  Our laws must adapt with the times as we work to create jobs, spur innovation, and bolster our economy,” said subcommittee Vice Chairman Leonard Lance (R-NJ).   The five bills that were unveiled today sponsored by #SubCMT members: H.R. ___, Better On-line Ticket Sales (BOTS) Act of 2016 – sponsored by Full Committee Vice Chairman Rep. Marsha Blackburn (R-TN), would declare unlawful the intentional use or sale of software used to bypass ticket sellers’ cyber defenses.   H.R. ___, the Revealing Economic Conclusions for Suggestions (RECS) Act  – sponsored by Rep. Mike Pompeo (R-KS), would ensure that any regulatory recommendation is only made if economic reasoning supports it.   H.R. ___, the Reinforcing American-Made Products Act of 2016 – sponsored by Rep. Gregg Harper (R-MS), establish a national standard on marketing products made domestically with the label Made in the U.S.A.   H.R.___, the Freeing Responsible and Effective Exchanges (FREE) Act – sponsored by Rep. Pete Olson (R-TX), allows FTC commissioners to hold informal bipartisan meetings.   H.R. ___, the FTC Robust Elderly Protections and Organizational Requirements to Track Scams Act – sponsored by Rep. Gus Bilirakis (R-FL), requires the FTC to publish its annual policy priorities and planned rulemakings so companies can plan accordingly, and report on its activity to protect the elderly. To view the six bills unveiled on Thursday, click here. ###  Read More

INSTA-GRAB: Behind the Scenes With Renee Ellmers

2016/04/29

On Thursday, Rep. Renee Ellmers (R-NC) was the latest committee member to take over the Energy and Commerce Committee’s Instagram account. Spotlighting Take Your Daughter to Work Day, along with a taste of Hollywood, Ellmers shared five behind the scenes photos of her busy day on Capitol Hill. Follow @energyandcommerce HERE. [[{"fid":"801","view_mode":"full","fields":{"format":"full","field_file_image_alt_text[und][0][value]":"","field_file_image_title_text[und][0][value]":""},"type":"media","link_text":null,"attributes":{"height":"616","width":"598","style":"width: 500px; height: 515px;","class":"media-element file-full"}}]] Good morning! I got an early start on the day catching up on overnight news and emails. Follow along as I take over @energyandcommerce Instagram today! -@repreneeellmers. Instagram [[{"fid":"802","view_mode":"full","fields":{"format":"full","field_file_image_alt_text[und][0][value]":"","field_file_image_title_text[und][0][value]":""},"type":"media","link_text":null,"attributes":{"height":"327","width":"582","class":"media-element file-full"}}]] Meet Raegia, who is joining me for #TakeYourDaughterToWorkDay. We shot this video before heading into the @energyandcommerce full committee markup. #RecordOfSuccess Watch the video HERE. Instagram [[{"fid":"803","view_mode":"full","fields":{"format":"full","field_file_image_alt_text[und][0][value]":"","field_file_image_title_text[und][0][value]":""},"type":"media","link_text":null,"attributes":{"height":"446","width":"598","class":"media-element file-full"}}]] I gave my #TakeYourDaughterToWorkDay daughter Raegia a quick tour of the @energyandcommerce committee room before markup started. I'm excited that the full committee advanced HR 2589, my bill to increase transparency at the @FCC by voice vote today. #RecordOfSuccess Instagram [[{"fid":"804","view_mode":"full","fields":{"format":"full","field_file_image_alt_text[und][0][value]":"","field_file_image_title_text[und][0][value]":""},"type":"media","link_text":null,"attributes":{"height":"597","width":"542","style":"width: 500px; height: 551px;","class":"media-element file-full"}}]] Enjoyed talking with @RealMichaelKelly (aka #DougStamper from #HouseofCards) about The Older Americans Act- legislation passed previously that was recently reauthorized in 2016. This legislation supports a broad array of services for our nation's most valued citizens, the elderly. Examples of some programs supported include Meals on Wheels and other nutrition services, as well as family caregiver support and other healthcare services #seniorcitizens need! Instagram [[{"fid":"805","view_mode":"full","fields":{"format":"full","field_file_image_alt_text[und][0][value]":"","field_file_image_title_text[und][0][value]":""},"type":"media","link_text":null,"attributes":{"height":"442","width":"597","class":"media-element file-full"}}]] This afternoon I met with Volvo executives and discussed transportation, energy, the environment and trade – issues we’ve done so much work on in the @energyandcommerce Committee. Volvo employs nearly 100 of my constituents in #NC02.  #RecordOfSuccess  Instagram *BONUS PIC* [[{"fid":"806","view_mode":"full","fields":{"format":"full","field_file_image_alt_text[und][0][value]":"","field_file_image_title_text[und][0][value]":""},"type":"media","link_text":null,"attributes":{"height":"598","width":"503","class":"media-element file-full"}}]] Here are five fun facts from Rep. Ellmers that you probably didn’t know. Instagram Stayed tuned for who our next special guest will be and follow @energyandcommerce on Instagram for more behind-the-scenes photos.   ###  Read More

If you have 60 seconds….

2016/04/29

[[{"fid":"800","view_mode":"full","fields":{"format":"full","field_file_image_alt_text[und][0][value]":"","field_file_image_title_text[und][0][value]":""},"type":"media","attributes":{"style":"width: 500px; height: 263px;","class":"media-element file-full"},"link_text":null}]] Press PLAY to watch the committee approve 22 bills.  ### Read More

#SubEnergyPower Examines Two Bills to Improve our Nuclear Power Landscape

2016/04/29

WASHINGTON, DC – The Energy and Power Subcommittee, chaired by Rep. Ed Whitfield (R-KY), today held a legislative hearing examining two energy bills to improve our nuclear power landscape. Nuclear energy generates 20 percent of our electricity and produces zero greenhouse gas emissions. Unfortunately, the Nuclear Regulatory Commission’s (NRC) regulatory process has been mired by bureaucratic red tape. Compounding these regulatory issues are budgetary and staffing issues that have long hampered the NRC. H.R. 4979, the Advanced Nuclear Technology Development Act of 2016, introduced by committee members Rep. Bob Latta (R-OH) and Rep. Jerry McNerney (D-CA), would; Provide the regulatory framework needed for safe, advanced nuclear energy technologies. H.R. 4979 would require DOE and the NRC work together to provide certainty for the development of advanced nuclear technology.  [[{"fid":"794","view_mode":"full","fields":{"format":"full","field_file_image_alt_text[und][0][value]":"","field_file_image_title_text[und][0][value]":""},"type":"media","link_text":null,"attributes":{"height":"145","width":"184","class":"media-element file-full"}}]] “It’s time for Congress to ensure that the NRC provides the framework so that innovators and investors can develop new technologies,” said Rep. Latta. “Passing this legislation is key to ensure that the United States remains a leader in the nuclear industry, which is vital for both our electricity mix, and our national security.” Marvin Fertel, President and Chief Executive Officer of the Nuclear Energy Institute, offered his support of H.R. 4979, saying, “We support passage of this bill, which will provide environmental and economic benefits to all Americans by setting the stage for the development of innovative commercial reactor technologies and helping to retain the energy source responsible for 63 percent of the nation’s carbon-free electricity.” H.R.___, the Nuclear Utilization of Keynote Energy Policies Act, introduced by committee member Rep. Adam Kinzinger (R-IL), would; Improve NRC’s licensing, budgeting, and regulatory process to help our existing fleet, foster investments in new plants, and ensure safety and protect public health.  [[{"fid":"796","view_mode":"full","fields":{"format":"full","field_file_image_alt_text[und][0][value]":"","field_file_image_title_text[und][0][value]":""},"type":"media","link_text":null,"attributes":{"height":"170","width":"199","class":"media-element file-full"}}]] Rep. Kinzinger noted, “I welcome the opportunity to discuss how we can maintain our nation’s position as the global leader in civilian nuclear power and the NRC’s position as the gold standard of safety. I think all of us recognize that if we cede that position it will have serious consequences for not only our economy, but also our national security.” Former NRC Commissioner Jeffery S. Merrifield, Partner at Pillsbury Law Firm and Chairman of the Advanced Reactors Task Force at the Nuclear Infrastructure Council, stated, “It is time to make dramatic and significant changes to reform the NRC as well as modernize the licensing process to spur innovation and enable Advance Reactor technologies to achieve the full measure of their promise and the success that the nation needs to meet its future energy and environmental goals.” [[{"fid":"799","view_mode":"full","fields":{"format":"full","field_file_image_alt_text[und][0][value]":"","field_file_image_title_text[und][0][value]":""},"type":"media","link_text":null,"attributes":{"height":"132","width":"189","class":"media-element file-full"}}]] “Nuclear energy is an integral part of an ‘all of the above’ energy policy. New nuclear technologies hold great promise to operate in a cost competitive environment, with even greater safety margins than existing reactors while generating less waste and reducing proliferation concerns,” said Chairman Whitfield. “However, regulatory uncertainty is repeatedly cited as a top barrier to developing these technologies. The Department of Energy, which supports nuclear research and development activities, should collaborate where applicable, with the NRC to address uncertainty.” Full committee Chairman Fred Upton (R-MI) concluded, “Because of the large role nuclear energy plays in Michigan and across the country, it’s imperative that folks have confidence in the Nuclear Regulatory Commission’s mission to protect public health and safety. This mission can, and should, be achieved while also providing regulatory certainty for NRC licensees and stakeholders. And the simple fact is we can’t have nuclear power without the NRC.” For an archived webcast of today’s hearing, witness testimony, and a background memo, click HERE. ###      Read More

Buffalo 10-Year-Old Has the “Spirit of a Champion”

2016/04/29

Ryan Patota, a 10-year-old from the Buffalo suburb Lancaster, New York, has a disease so rare, not much about the incidence of the disease is known. Ryan was born with ectrodactyly ectodermal dysplasia - the symptoms are wide-ranging, but often include missing central fingers or toes. Ryan, who was born with a cleft lip and cleft palate, is also incapable of sweating. Estimates indicate there are approximately 200 different types of ectodermal dysplasias. At 2 years-years-old, Ryan received a kidney transplant from his father. According to The Buffalo News, “Life for patients like Ryan means spending time in the hospital for many procedures and treatments, and seeing a range of specialists – pediatricians, pediatric surgeons, plastic surgeons, transplant surgeons, orthopedic surgeons, dentists, speech therapists, dermatologists and others.” [[{"fid":"791","view_mode":"full","fields":{"format":"full","field_file_image_alt_text[und][0][value]":"Image 1","field_file_image_title_text[und][0][value]":"Image 1"},"type":"media","link_text":null,"attributes":{"alt":"Image 1","title":"Image 1","height":"216","width":"324","class":"media-element file-full"}}]] One of Ryan’s primary physicians, Dr. Wayne Waz, said his future looks bright. “Ryan has the spirit of a champion. There are limits to what these kids can do, but Ryan keeps overcoming them.” Precision medicine is especially critical when it comes to treating rare diseases. H.R. 6, the 21st Century Cures Act, prioritizes precision medicine and ensures medicine is personalized to the patient’s needs. The momentum to deliver #CuresNow to help rare disease patients like Ryan is growing every day.   [[{"fid":"792","view_mode":"full","fields":{"format":"full","field_file_image_alt_text[und][0][value]":"Image 2","field_file_image_title_text[und][0][value]":"Image 2"},"type":"media","link_text":null,"attributes":{"alt":"Image 2","title":"Image 2","height":"71","width":"468","class":"media-element file-full"}}]] ‘Rare form of a rare disease’ can’t hold back Lancaster fifth-grader For Ryan Patota and his parents, a rare disease has tested their perseverance, helping them to find an inner strength through the toughest times. Ryan was born with a genetic syndrome known as ectrodactyly ectodermal dysplasia. It’s so uncommon that the incidence isn’t clearly known. One of his main physicians, Dr. Wayne Waz, chief of the division of pediatric nephrology at Women & Children’s Hospital, described it as “a rare form of a rare disease.” Symptoms can vary, but often include an abnormality known as ectrodactyly, a condition in which part or all of the central fingers or toes are missing. Like others with the disorder, Ryan also was born with a cleft lip and cleft palate. Ectodermal dysplasia refers to abnormalities in the outermost layer of the embryo and generally affect the hair, teeth, nails and skin. Salivary glands don’t work well. Teeth are out of alignment. Among other things, Ryan can’t sweat, meaning he’s lost his body’s natural way for regulating temperature, especially in hot weather. … There are around 200 different types of ectodermal dysplasias. They can be mild or severe. In some cases, as with Ryan, babies are born suffering from dangerous genitourinary problems, such as obstructions of the tubes that carry urine from the kidney to the bladder, or malfunctions of the bladder. It may seem improbable, but Ryan, now 10, was only 2 years old when he received a kidney transplant from his father, Patrick. Life for patients like Ryan means spending time in the hospital for many procedures and treatments, and seeing a range of specialists – pediatricians, pediatric surgeons, plastic surgeons, transplant surgeons, orthopedic surgeons, dentists, speech therapists, dermatologists and others. … “In the beginning, my perspective was dark. Ever since his birth, one year feels like 10 years. We worried about Ryan’s future. We feared he would have a tough life,” she (Eunok Patota, Ryan’s mother) said. Now, they can’t imagine life without Ryan. The couple, both observant Catholics, tell Ryan that God gives everyone a mission, and his is to teach others about the value of life. “He’s shown us that you can’t take any day for granted. You don’t know what is going to happen,” Eunok said. Ryan will always have to be careful to avoid complications, and he likely will need another transplant down the road. But he can live a near-normal lifespan, Waz said. If his attitude is any indication, things are looking good. “Ryan has the spirit of a champion,” he said. “There are limits to what these kids can do, but Ryan keeps overcoming them.” Read the full story online here. ###   Read More

The Pet Medication Industry: Issues and Perspectives

2016/04/29

[[{"fid":"790","view_mode":"full","fields":{"format":"full"},"type":"media","attributes":{"alt":"The Pet Medication Industry: Issues and Perspectives.","height":"380","width":"640","class":"media-element file-full"},"link_text":null}]]   To read a related press release, click here.  Read More

H.R. 4979, the Advanced Nuclear Technology Development Act of 2016 and H.R.___, Nuclear Utilization of Keynote Energy Policies Act.

2016/04/29

[[{"fid":"789","view_mode":"full","fields":{"format":"full"},"type":"media","link_text":null,"attributes":{"alt":"Nuclear Utilization of Keynote Energy Policies Act","height":"380","width":"640","class":"media-element file-full"}}]] Read More

Contact Information

2125 Rayburn HOB
Washington, DC 20515
Phone 202-225-2927
Fax 202-225-1919
energycommerce.house.gov


Membership

Joe Barton

TEXAS' 6th DISTRICT

Gus Bilirakis

FLORIDA's 12th DISTRICT

Marsha Blackburn

TENNESSEE's 7th DISTRICT

Susan Brooks

INDIANA's 5th DISTRICT

Larry Bucshon

INDIANA's 8th DISTRICT

Michael Burgess

TEXAS' 26th DISTRICT

Chris Collins

NEW YORK's 27th DISTRICT

Kevin Cramer

NORTH DAKOTA

Renee Ellmers

NORTH CAROLINA's 2nd DISTRICT

Bill Flores

TEXAS' 17th DISTRICT

Morgan Griffith

VIRGINIA's 9th DISTRICT

Brett Guthrie

KENTUCKY's 2nd DISTRICT

Gregg Harper

MISSISSIPPI's 3rd DISTRICT

Richard Hudson

NORTH CAROLINA's 8th DISTRICT

Bill Johnson

OHIO's 6th DISTRICT

Adam Kinzinger

ILLINOIS' 16th DISTRICT

Leonard Lance

NEW JERSEY's 7th DISTRICT

Bob Latta

OHIO's 5th DISTRICT

Billy Long

MISSOURI's 7th DISTRICT

David McKinley

WEST VIRGINIA's 1st DISTRICT

Cathy McMorris Rodgers

WASHINGTON's 5th DISTRICT

Markwayne Mullin

OKLAHOMA's 2nd DISTRICT

Tim Murphy

PENNSYLVANIA's 18th DISTRICT

Pete Olson

TEXAS' 22nd DISTRICT

Joe Pitts

PENNSYLVANIA's 16th DISTRICT

Mike Pompeo

KANSAS' 4th DISTRICT

Steve Scalise

LOUISIANA's 1st DISTRICT

John Shimkus

ILLINOIS' 15th DISTRICT

Fred Upton

MICHIGAN's 6th DISTRICT

Greg Walden

OREGON's 2nd DISTRICT

Ed Whitfield

KENTUCKY's 1st DISTRICT

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