Committee on Energy and Commerce

Fred Upton

“Roar for a Cure”

2016/06/24

Elyse Driscoll from Marlborough, Massachusetts, is remembered today as a fighter and passionate young teenager. Two years ago she passed away at the age of 13 after her battle with Castleman disease (CD). What started out as pains in the young girl’s mouth, first thought to be related to two years of braces, soon resulted in her being admitted to Boston Children’s Hospital and an eventual diagnosis with CD. The rare disease causes an abundance of cells to grow in one’s lymph nodes. With the disease, Elyse had many complications including an autoimmune blistering skin disease. Following her diagnosis, she had surgery to remove a tumor, but had additional complications that revealed the tumor was still present. Following 9 months of extensive treatment, which included the assistance of a breathing machine, Elyse lost her battle. Elyse’s mother, Kim, is a Castleman Disease Collaborative Network board member and has been active in the efforts to find a cure for CD, and help raise awareness. Next month, ELYSESTRONG will host its second annual Roar for a Cure motorcycle ride in Marlborough. Kim Driscoll described to the Community Advocate how they came to call the event “Roar for a Cure.” She explained, “Everybody said that Elyse was strong and the song ‘Roar’ symbolized her… The loudest sound we could think of was the roar of motorcycles – and they get attention. We want everyone to know about CD.” ELYSESTRONG is on the #Path2Cures to deliver #CuresNow. Let’s hear you “roar for a cure.” [[{"fid":"1157","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":"58","width":"468","class":"media-element file-full"}}]] Motorcyclists to ‘roar for a cure’ of rare disease Kim Driscoll of Marlborough founded ELYSESTRONG as a legacy to her daughter Elyse, as well as to raise awareness and funds for the Castleman Disease Collaborative Network (CDCN). ELYSESTRONG will host the second annual Roar for a Cure motorcycle ride Saturday, July 23, beginning and ending at the Marlborough Moose Family Center 1129, 67 Fitchburg St. Others can join the motorcyclists afterward for lunch and family-friendly activities. Elyse passed away at age 13 in February 2014 of Castleman disease (CD), a rare condition that causes too many cells to grow in lymph nodes. She was a seventh-grade honor student at 1Lt. Charles W. Whitcomb Middle School. Driscoll remembers her daughter as “loving life, vibrant, sociable and involved in everything.” As a CDCN board member, Driscoll hears questions of patients and families affected by CD, which was first described by Dr. Benjamin Castleman in the 1950s. “There is no quick answer when asked about CD,” she acknowledged. “I usually tell them that it’s a similar disease to lymphoma.” … In May 2013, Elyse experienced pains in her mouth, which the family initially thought was related to her wearing braces for two years. A mouth infection progressed to blistering on her entire body. After several doctor visits, Elyse was admitted into Boston Children’s Hospital, where she was diagnosed with CD. After the diagnosis, Elyse underwent surgery to remove a tumor. She hemorrhaged during the surgery and had her blood volume replaced multiple times. Her condition was complicated by paraneoplastic pemphigus, an autoimmune blistering skin disease. In July 2013, Elyse was transferred to Shriners Hospital for Children for wound care. Then she developed septic shock and was transferred to the intensive care unit at Massachusetts General Hospital. Her skin condition never improved, indicating that the tumor was still present. Driscoll stayed at Elyse’s bedside throughout nine months of extensive treatments including chemotherapy and radiation during three hospitalizations. She decorated her daughter’s room with photos, balloons, cards, and notes from friends and family. “I packed a suitcase and stayed with Elyse,” she shared. “Even though Elyse was very heavily medicated and couldn’t talk because she had a trach tube and a machine breathing for her, she’d still nod her head ‘yes’ or ‘no’ and occasionally even smile. She was still fighting.” The hospitalizations began a month after the Boston Marathon bombings. The “Boston Strong” motto inspired the name for ELYSESTRONG. Also at that time, a popular song was Katy Perry’s “Roar,” Driscoll noted. “Everybody said that Elyse was strong and the song ‘Roar’ symbolized her,” she relayed. “The loudest sound we could think of was the roar of motorcycles – and they get attention. We want everyone to know about CD.” The self-described “Castleman Warriors” known as ELYSESTRONG are informing people about the rare disease by participating in local fundraisers including their own Roar for a Cure. For more information about ELYSESTRONG and CD, visit elysestrong.com and cdcn.org/elysestrong. … Click HERE to read the entire article online. ### Read More

#RecordOfSuccess RECAP: Two Major E&C Priorities Signed into Law This Week

2016/06/24

WASHINGTON, DC – The House Energy and Commerce Committee’s ongoing, bipartisan #RecordOfSuccess continues to grow as President Obama this week signed two committee-led bills into law.  [[{"fid":"1154","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":"336","width":"640","class":"media-element file-full"}}]] “It took some time, but with perseverance and dedication, we can finally fly the W on chemical safety reform.” – Energy and Commerce Committee Chairman Fred Upton (R-MI) The Frank R. Lautenberg Chemical Safety for the 21st Century Act updates our chemical safety laws for the 21st century and represents the most meaningful environment and the economy legislation in a quarter century. The new law culminates a multi-year, multi-Congress effort. For a fact sheet on the bill, click here.  [[{"fid":"1156","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":"336","width":"640","class":"media-element file-full"}}]] “We came together, Republicans and Democrats, to improve and strengthen the safety of our pipelines – and we got the job done.” – Chairman Upton A joint Energy and Commerce and Transportation and Infrastructure Committee amendment to S. 2276, the Protecting our Infrastructure of Pipelines and Enhancing Safety (PIPES) Act of 2016 was signed into law on Wednesday. The bill will work to reform the Pipeline and Hazardous Materials Safety Administration (PHMSA) to increase efficiency and transparency. For a fact sheet, click here. LEARN MORE about the Energy and Commerce Committee’s bipartisan #RecordOfSuccess here.   ###  Read More

Upton and Pitts Expand Request to FDA on Efforts to Protect Trade Secrets and Confidential Information

2016/06/24

WASHINGTON, DC – House Energy and Commerce Committee Chairman Fred Upton (R-MI) and Health Subcommittee Chairman Joseph Pitts (R-PA) today continued their efforts seeking answers about the FDA’s procedures to product trade secret and confidential information in the food industry. “The Committee’s concerns about FDA’s procedures to protect trade secret and confidential information are underscored by an insider trading case brought by federal officials recently in New York,” wrote Upton and Pitts. “Prosecutors found that a political intelligence consultant and former FDA official unlawfully obtained the status and approval of a generic drug through contact with a current FDA senior official. The former FDA official provided the highly confidential information to a portfolio manager, who used the information to trade in the securities of two pharmaceutical companies likely to be affected by an approval of a generic enoxaparin application.” The leaders continued, “As a result of the trading scheme, approximately $25 million in trading profits were earned when the FDA announced its first such approval. The portfolio manager also tipped off a healthcare-focused hedge fund with material nonpublic information from the FDA, reaping millions of dollars in illegal profits.” Upton and Pitts previously sent a letter to the FDA on February 17, 2016, requesting information on agency procedures to protect confidential information. The agency’s May 6, 2016 reply did not provide detailed information. “From your initial response, it is clear that FDA has some procedures in place to protect trade secrets and confidential information. However, your response does not address how effectively FDA has implemented those procedures and controls, or how FDA audits employee compliance with these controls,” wrote Upton and Pitts. The leaders have requested additional information on the effectiveness of security measures, how FDA monitors compliance, and what additional steps the agency is taking in light of this recent development. Click HERE to read a copy of FDA’s May response to the committee and HERE for a copy of Chairmen Upton and Pitts’ reply to the FDA today. ### Read More

Upton & Pallone Request Briefing from Commodity Commission

2016/06/24

WASHINGTON, DC – House Energy and Commerce Committee Chairman Fred Upton (R-MI) and Ranking Member Frank Pallone, Jr. (D-NJ) today sent a letter to the U.S. Commodity Futures Trading Commission (CFTC) requesting a briefing on a current proposal before the commission. The members are concerned that the CFTC’s proposal could have a negative impact on wholesale electricity markets and would “allow private rights of action to enforce certain violations of the Commodity Exchange Act (CEA) over electricity-related products and instruments traded in electricity markets administered by Regional Transmission Organizations and Independent System Operators (RTO/ISO).” Given the committee’s jurisdiction over the Federal Energy Regulatory Commission (FERC) and that FERC is the primary federal regulator of electricity transactions and oversees RTO/ISO markets, the members continued, “We are concerned that the CFTC’s proposal could adversely affect FERC’s fundamental statutory missions of ensuring just and reasonable rates in wholesale electric markets and ensuring the reliability of the electric grid.” To view the letter online, click here. ###  Read More

Letter to FDA Reiterating Concerns on Security of Food Industry Trade Secrets and Confidential Information

2016/06/24

Excerpt: "The Committee’s concerns about FDA’s procedures to protect trade secret and confidential information are underscored by an insider trading case brought by federal officials recently in New York. Prosecutors found that a political intelligence consultant and former FDA official unlawfully obtained the status and approval of a generic drug through contact with a current FDA senior official. The former FDA official provided the highly confidential information to a portfolio manager, who used the information to trade in the securities of two pharmaceutical companies likely to be affected by an approval of a generic enoxaparin application.” To read a copy of the letter, click here. Read More

Letter to CFTC Chairman Timothy G. Massad

2016/06/24

Excerpt: “We are concerned that the CFTC’s proposal could adversely affect FERC’s fundamental statutory missions of ensuring just and reasonable rates in wholesale electric markets and ensuring the reliability of the electric grid. Electricity is a commodity unlike any other and we are concerned that CFTC efforts to authorize private rights of action over RTO/ISO physical and virtual products could create uncertainty and adversely affect the efficient operation and regulation of electricity markets, a result never intended by Congress.”  To read the letter, click here.  Read More

POSTPONED: Strengthening our National Trauma System

2016/06/24


Select Panel Refers University of New Mexico & Southwestern Women’s Options to New Mexico Attorney General for Criminal Investigation

2016/06/23

Washington, DC – The Select Investigative Panel today issued a criminal referral to New Mexico Attorney General Hector Balderas detailing evidence that the University of New Mexico (UNM) and Southwestern Women’s Options (SWWO) may have violated New Mexico’s Jonathan Spradling Revised Uniform Anatomical Gift Act (Spradling Act). The referral letter also notes that further investigation is warranted into whether UNM or SWWO also violated 42 U.S.C. § 289g-2, a federal statute that makes it a 10-year felony to receive valuable consideration in exchange for human fetal tissue.   “Section 289g-2 requires safeguards be in place, including a concern that too close a relationship might be formed between an abortion clinic and researchers,” Chairman Marsha Blackburn writes in the referral to Attorney General Balderas. “Through its investigation, the Panel has discovered that personnel within UNM’s hospital and medical school have aggressively engaged in expanding abortion in New Mexico through the offices, personnel, and resources of UNM.”   Over the course of its inquiry, the Select Panel has uncovered evidence of a symbiotic relationship between UNM and SWWO, a clinic located one mile from UNM that provides abortions through all three trimesters of pregnancy. It is the Panel’s understanding that SWWO is the sole provider of fetal tissue to UNM.   The Spradling Act prohibits making anatomical gifts of the remains of any fetus that is the product of an induced abortion. The consents ostensibly obtained by SWWO from mothers of aborted infants do not validate the donation of their infants’ remains for research, because under the Spradling Act the bodies or parts of aborted infants may not be anatomical gifts.   “Documentation obtained by the Panel in the course of our investigation reflects the transfer of fetal tissue from Southwestern Women’s Options to UNM for research purposes is a systematic violation of New Mexico’s Spradling Act,” Blackburn says. “These violations occurred as UNM personnel procured fetal tissue from patients at Southwestern Women’s Options for research by UNM entities.”   Click HERE to read the entire letter and accompanying documents. ### Read More

INSTA-GRAB: #BehindTheScenes With Steve Scalise

2016/06/23

On Wednesday, House Majority Whip Steve Scalise (R-LA), was the latest committee member to take over the Energy and Commerce Committee’s Instagram account. Spotlighting congressional baseball practice as well as his speech at AEI with Chairman Fred Upton (R-MI) to unveil a #betterway for health care, Scalise shared five behind the scenes photos of his busy day on Capitol Hill. Follow @energyandcommerce HERE. [[{"fid":"1141","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":"358","width":"356","class":"media-element file-full"}}]] @stevescalise here, taking over the E&C Instagram today! Kicking off the day with practice for the Congressional Baseball Game at Nationals Park with Coach (and former Chairman) Joe Barton. Instagram [[{"fid":"1142","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":"344","width":"348","class":"media-element file-full"}}]] At today’s leadership press stakeout we previewed the House Republican #Obamacare replacement plan! Instagram [[{"fid":"1143","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":"363","width":"363","class":"media-element file-full"}}]] Chairman Upton and I are at the rollout for the House Republican replacement for Obamacare #betterway #selfie Instagram [[{"fid":"1144","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":"368","width":"372","class":"media-element file-full"}}]] The #betterway alternative to #Obamacare is a plan worthy of the American people, and shows we're the party of ideas.  Instagram [[{"fid":"1145","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":"377","width":"377","class":"media-element file-full"}}]] Headed to the House floor for late night votes after a big day – thanks to E&C and @repfredupton for letting me take over their Instagram, it’s time to hand back the reins!  Instagram *BONUS PIC* [[{"fid":"1146","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":"413","width":"404","class":"media-element file-full"}}]] Here are five fun facts from Rep. Scalise 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

Survey Says!... It’s Time for #CuresNow!

2016/06/23

Support continues to get stronger for #CuresNow. A new poll commissioned by the Galen Institute and Center Forward identifies an area of health care where nearly everyone agreed – action is needed to support medical innovation to discover new treatments and cures. The Galen Institute’s Grace-Marie Turner highlights the findings today in Forbes that 78 percent of respondents said it should be a top priority for Congress to foster policies supporting medical innovation. The results hit the 90 percent range when asked if medical discoveries can improve quality of care. “This is a rare example of consensus,” said Doug Usher of Purple Insights. Energy and Commerce Committee Chairman Fred Upton (R-MI) commented, “Everywhere you turn, support continues to build for #CuresNow. More cures and treatments, greater innovation, and more hope for families is something we all should be able to rally behind.” Survey says!... It’s time for #CuresNow! [[{"fid":"1139","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":"77","width":"225","class":"media-element file-full"}}]] In A Politically Polarized Year, Poll Finds Wide Agreement Among Voters On One Health Care Agenda By Grace-Marie Turner A new poll of voters in battleground states finds a rare opportunity for bipartisan agreement on health care, with Americans strongly favoring action on public policies that support medical discovery into new treatments and cures. The poll was jointly commissioned by the Galen Institute and Center Forward, center-right and center-left think tanks. Purple Insights interviewed 800 registered voters earlier this month and found that nearly all those surveyed believe it is important for the United States to continue to develop new treatments and cures for diseases and believe these new discoveries are an opportunity to help the United States maintain its competitive edge. A strong 78% say that fostering policies that support medical innovation should be a top priority for members of Congress… Other key findings of the poll: Nearly two-thirds of voters (65%) want the next president to prioritize medical discovery during his/her first 100 days in office The poll shows overwhelming support for ongoing access to new treatments and cures through Medicare and private health plans, for modernizing the Food and Drug Administration, and facilitating new public-private partnerships 52% identify biopharmaceutical and biotechnology companies as investing the most in new discoveries; 20% thought academia and non-profit institutions were the top investors, and only 13% said the federal government and government agencies invest the most. The respondents are correct:  Private companies invest $59 billion in medical research every year. The federal government’s budget for medical research, including the National Institutes of Health, is $30 billion.  Similar data are not available for investments by academia and non-profit institutions. … The development of treatments and cures already is a focus for policymakers, with Energy and Commerce Committee Chairman Fred Upton leading the charge with the 21st Century Cures Act. The U.S. House of Representatives passed the measure last year, and it is now working its way through the Senate. … “From a polling standpoint, we’ve primarily seen divisive or mixed results on the majority of healthcare issues,” said Doug Usher, managing partner of Purple Insights. “This is a rare example of consensus in the midst of a contentious election cycle.” Among the top reasons Americans support medical innovation: By 95% to 4%, those surveyed said medical discoveries can improve the overall quality of healthcare in the U.S. By 94% to 4%, they say that medical discoveries can help the U.S. maintain its competitive edge in science By 93% to 6%, they say they can boost American productivity by helping create a healthy workforce Equally strong majorities said that medical discoveries can reduce costs associated with hospitalizations and nursing home stays and that investment in this area can improve the U.S. economy and sustain higher paying jobs with scientists who will continue to develop new medical discoveries. … Click HERE to read the full column online. ###   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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