The 21st Century Cures Act has attracted researchers, physicians, advocates, and patients to engage in a discussion about how to unleash the next generation of cures and treatments, taking advantage of the incredible promise of science and research. Throughout this multiyear effort, the patients have served as an inspiration to continue fighting. Matthew Dugas, a resident of Ypsilanti, Michigan, is no different.
Matthew’s fight against mitochondrial disease, a metababoli disorder, and hemophagocytic lymphohistiocytosis (HLH) ended too soon, at the young age of 10. The Detroit Free Press reported that Matthew and his sister, Adrianna, wanted to be doctors when they grew up, in hopes of becoming a “medical research duo” that would combat diseases and search for better treatments. Adrianna continued, “we both planned on going to school together and finding a cure for his disease so he could live with me forever.”
Kids like Matthew and the thousands of others suffering from rare diseases need more research, better treatments, and faster cures. The 21st Century Cures Act fights for Americans so that all patients can get the cures they deserve.
October 6, 2015
The fight continues for Ypsilanti boy who died trying
Matthew Dugas wanted to become a singer someday, he told his mom. But if that didn't pan out, he said he'd like to become a doctor to research the diseases that were slowly robbing him of his life.
He and his 14-year-old sister Adrianna dreamed of becoming a medical research duo, living and working together to find better treatments and, ultimately, a cure for mitochondrial disease, a metabolic disorder, and hemophagocytic lymphohistiocytosis, more commonly known as HLH. It occurs when the body's immune system goes awry, and infection-fighting cells attack healthy tissue, causing organ damage.
But Matthew didn't get to grow up. Though he fought for his own life, he didn't get the chance to fight for the lives of other kids who struggled as he did.
Matthew died April 20 surrounded by his sisters, brothers and parents at the University of Michigan's C.S. Mott Children's Hospital. He was 10 years old.
Fighting for the good guys was something he loved to do, said his mother, Erica Dugas.
When he and his family went to Walt Disney World with the Make-A-Wish Foundation in 2013, she said his wish was to fight the Dark Side, going up against Darth Vader in a light saber duel at Hollywood Studios.
"He was amazing," said his sister Adrianna Dugas, a 14-year-old freshman at Milan High School. "He was the best brother you could ever have. If you told him something, he would keep the secret. He would never tell.
"Me and my brother were always close, but when we really bonded was on the Make-a-Wish trip. As time went on … we both planned on going to school together and finding a cure for his disease so he could live with me forever."
The Ypsilanti boy loved superheroes, "Star Wars" and playing with Legos. But from the day he was born, Erica Dugas said Matthew was almost always sick.
"He was a small baby, but full-term," she said. "Right away, from the very beginning, he was having respiratory problems and trouble eating."
Matthew was termed failure to thrive by the time he was 3 months old. He couldn't gain weight, couldn't keep down his formula.
After years of recurrent hospitalizations and testing, he was diagnosed by a specialist in Georgia at age 6 with a genetic mitochondrial disease.
One day, Matthew woke up and had lost the ability to walk or crawl. Then his hands began to atrophy. But it wasn't until last year that doctors first identified HLH.
It can be triggered by a virus or an autoimmune disorder; some forms are rooted in genetic problems. Many times, said Dr. Jim Connelly, an assistant professor of pediatric bone marrow transplant at C.S. Mott. Children's Hospital in Ann Arbor, doctors are unable to pinpoint a cause.
It's most commonly treated with steroids, chemotherapy and sometimes a bone marrow transplant, even though it isn't cancer. The idea, he said, is to wipe out the overactive immune system and replace it with a new, healthy one. But it doesn't always work. And there are very serious risks that come with such treatments.
"Our treatment is really based on slowing down or shutting down the immune system," said Connelly, who treated Matthew at Mott. "The most common regimen that we use was actually developed over 20 years ago. So even though we have a lot of brand new drugs we could potentially use to treat HLH, the standard therapy regimen was built over 20 years ago."
To read the full article, click here.
To learn more about 21st Century Cures, click here.
WASHINGTON, DC – Bipartisan leaders of the House Energy and Commerce Committee expressed concern following today’s decision by the European Union to invalidate the safe harbors agreement that allowed for unfettered data transfers between the United States and the European Union.
“The ripple of uncertainty caused by today’s decision is cause for concern as digital data flows have become a bedrock of commerce. We must be mindful of any decision that threatens U.S. jobs and the strong commercial ties between our country and the European Union,” said full committee Chairman Fred Upton (R-MI) and Ranking Member Frank Pallone, Jr. (D-NJ), Communications and Technology Subcommittee Chairman Greg Walden (R-OR) and Ranking Member Anna Eshoo (D-CA), and Commerce, Manufacturing, and Trade Subcommittee Chairman Michael C. Burgess, M.D. (R-TX) and Ranking Member Jan Schakowsky (D-IL).
The leaders continued, “In this ever-evolving area there have been good conversations across the Atlantic to address privacy. Our hope is that European regulators move quickly, working with the Department of Commerce and others here in the U.S., to provide a quick resolution to this unnecessary uncertainty.”
The committee has requested a briefing from the Department of Commerce for members on today’s decision and what the next steps are in the safe harbor negotiations.
The U.S. House of Representatives on Friday is set to consider H.R. 702, a bill that lifts the nearly 40-year-old ban on crude oil exports. Energy and Commerce Committee Chairman Emeritus Joe Barton (R-TX) authored this legislation that would boost energy production, create jobs, and improve energy security.
This week committee members Rep. Bill Flores (R-TX) and Rep. Markwayne Mullin (R-OK) highlighted in The Hill the many reasons why lifting the ban on crude oil exports is good policy. “The outdated crude oil export ban does little to benefit our domestic supply. It is hurting out domestic production, limiting our potential to create jobs and ultimately impeding our overall economy,” said Flores and Mullin. “Economists, energy producers and experts from all sides of the political spectrum predict that lifting the ban will in fact make gas prices go down. ... Lifting the ban on crude oil is about maintaining our standing as a global leader, incentivizing innovation, reducing consumer energy costs and bringing jobs back for American families.”
Creating jobs, keeping energy affordable, boosting energy production and improving our energy security deserve bipartisan support. It’s time to say #Yes2Energy by voting to #LiftTheBan on crude oil exports.
To view letters of support, click here.
October 5, 2015
No more reasons to keep the export ban on crude oil
By Reps. Bill Flores (R-TX) and Markwayne Mullin (R-OK)
The current ban on U.S. crude oil exports was signed into law by former President Ford on Dec. 22, 1975. That year, Olivia Newton-John won a Grammy, “One Flew Over the Cuckoo’s Nest” and “Jaws” ruled the box office, the Vietnam War drew to a close, and America was suffering from gasoline shortages and the Arab oil embargo.
Forty years ago, in a totally different geopolitical era, the ban on crude oil exports made more sense. The 1973 Arab oil embargo shrank global supply, leading world oil prices to skyrocket, and shortages and shocks were felt across the United States. The ban was put in place in response to an unstable global crude oil market and to ensure that America had enough oil to drive our own economy.
But today, the U.S. energy landscape has evolved, the global economy has expanded and geopolitical challenges are unique to the 21st century. The outdated crude oil export ban does little to benefit our domestic supply. It is hurting our domestic production, limiting our potential to create jobs and ultimately impeding our overall economy.
It is simple: the policy, which was created to protect American energy consumers by limiting our ability to sell product in the global market, is currently harming our economy.
The United States is now the No. 1 producer of oil and gas in the world. We no longer live in an era of scarcity, but rather in an era of domestic energy abundance that is recharging our manufacturing industry and serving as a key contributor to our economic recovery. As this American energy revolution and manufacturing resurgence unfolds, it is more important that we modernize our aging energy policy to reflect current inputs and domestic and global market forces.
Economists, energy producers and experts from all sides of the political spectrum predict that lifting the ban will in fact make gas prices go down. An analysis from the independent Government Accountability Office shows that lifting the ban would increase U.S. crude oil prices by up to $8 per barrel and reduce gasoline prices by up to 13 cents per gallon, thus creating one of the few unique economic environments that benefits both consumers and producers.
Thanks to advances in technology, U.S. crude oil production has doubled since 2008. Our production has been so successful that the U.S. Energy Information Agency has estimated the United States will not need to import any oil at all by 2037. In 1975, Ford and Congress could never have imagined this scenario, so it is our responsibility to make sure U.S. energy policies are modernized to support innovation, manufacturing and American jobs, and to keep pace with the global energy market.
With the leadership of Rep. Joe Barton (R-Texas), the effort to lift the ban on crude oil exports has received strong bipartisan support. His bill to lift the 40-year-old ban cleared an important hurdle when it was approved by the House Energy and Commerce Committee, and now it is time to use this momentum to carry the measure through the House, the Senate and onto the president’s desk.
Lifting the export ban on crude oil is about maintaining our standing as a global leader, incentivizing innovation, reducing consumer energy costs and bringing jobs back for American families. We are at a point in time where we have a choice. As a nation we can choose to modernize our energy policy to achieve an environment of energy abundance, domestic energy security and job creation, or we can choose to maintain an outdated status quo.
To read the op-ed online, click here.
WASHINGTON, DC – The House of Representatives this week will consider a resolution creating a select panel within the Energy and Commerce Committee for the purpose of investigating abortion practices, and the handling of and policies regarding fetal tissue, its cost, and how it is obtained. The Speaker of the House will appoint members to the panel. The House Committee on Rules will markup the resolution this evening.
“No issue is more deserving of our undivided attention than protecting the dignity of human life,” said full committee Vice Chairman Marsha Blackburn (R-TN). “Over the past several weeks we have been asking serious and, frankly, troubling questions about how infant lives are being treated. What our investigation has shown us so far is we have many more questions than we have answers. This select panel will devote the time necessary to get the facts in this investigation and help ensure that the most innocent lives among us are given the respect they deserve as human babies.”
NOTE: The Energy and Commerce Committee, along with the House Judiciary Committee and House Oversight and Government Reform Committee, has been investigating the practices of Planned Parenthood and several tissue procurement companies in the wake of a series of abhorrent videos released over the past several months.
WASHINGTON, DC – The House Committee on Energy and Commerce today announced its hearing schedule for the week of October 5. Additionally, H.R. 702, sponsored by Chairman Emeritus Joe Barton (R-TX), is expected to be on the House Floor next week. The bill lifts the nearly 40-year-old ban on crude oil exports, enjoys broad bipartisan support, and would benefit American workers and lower the price at the pump.
On Wednesday, the Subcommittee on Energy and Power will examine the administration’s cap and trade rules that seek to fundamentally change the way we generate, transmit, and consume electricity in America. Members will hear testimony from Janet McCabe, Acting Assistant Administrator for the Office of Air and Radiation. The Majority Memorandum and witness list are available here. Witness testimony will be posted at the same link as it is available.
Also on Wednesday, the Subcommittee on Communications and Technology will continue to examine spectrum needs in the 21st century with a review of the federal government’s allocations and uses of our nation’s airways. Members will examine the Federal Spectrum Incentive Act, authored by Reps. Brett Guthrie (R-KY) and Doris Matsui (D-CA). This bill works to provide financial incentives for federal users to improve government systems and increase efficiency. The Majority Memorandum and witness list are available here. Witness testimony will be posted at the same link as it is available.
On Thursday, the Subcommittee on Oversight will investigate Volkswagen’s alleged efforts to circumvent emissions requirements for certain models of diesel engine passenger vehicles. Members will hear testimony from Volkswagen Group of America President and CEO Michael Horn as well as the Environmental Protection Agency. The Majority Memorandum, a witness list, and witness testimony will be available here as they are posted.
Also on Thursday, the Subcommittee on Health will hold a legislative hearing to discuss a number of bipartisan bills to address the growing threat of drug abuse.
The bills to be reviewed are:
On Friday, the Subcommittee on Environment and the Economy will hold a previously postponed hearing that will review and examine the implementation of the Hazardous Waste Electronic Manifest Establishment Act, a bill that the committee helped usher into law during the 112th Congress in 2012. The Majority Memorandum, a witness list, and witness testimony will be available here as they are posted.
Wednesday, October 7, 2015
10 AM2123 Rayburn HOBSubcommittee on Energy and PowerHearing on “EPA’s CO2 Regulations for New and Existing Power Plants”
10:15 AM2322 Rayburn HOBSubcommittee on Communications and TechnologyHearing on “Improving Federal Spectrum Systems”
Thursday, October 8, 2015
10 AM2123 Rayburn HOBSubcommittee on OversightHearing on “Volkswagen Emissions Cheating Allegations: Initial Questions”
10:15 AM2322 Rayburn HOBSubcommittee on HealthHearing on “Examining Legislative Proposals to Combat our Nation’s Drug Abuse Crisis”
Friday, October 9, 2015
9:00 AM2123 Rayburn HOBSubcommittee on Environment and the EconomyHearing on “E-Manifest: An Update on Implementation.”
H.R. 702: Bipartisan Bill to #LiftTheBan That Will Help Promote National Security and Energy Security
Authored by Rep. Joe Barton (R-TX)
BACKGROUND – H.R. 702, To adapt to changing crude oil market conditions
The ban on crude oil exports was put in place in 1975 in response to the Arab oil embargo. The export ban is a relic of the past that is harming our economy. The U.S. is now one of the leading producers of oil in the world, benefiting American workers and lowering the price at the pump. In order to keep domestic energy production and jobs growing strong, our energy policy must be updated to reflect 21st century realities.
Lifting the ban on exports has broad bipartisan support. The Energy Information Administration, think tanks across the political spectrum, and respected academic institutions like Harvard University, all agree that lifting the ban on exports would likely boost our energy production, create thousands of jobs, lower gasoline prices, increase our energy security, and weaken countries like Iran and Russia, who use oil as a political weapon. The president has entered into an agreement with the Iranians to export oil, and the U.S. should not be put at a competitive disadvantage.
Lifting the ban on exports and directing some of the profits from federal oil and gas leases to improve our military’s strategic sealift and global response capability would enhance our energy security and national security even further.
H.R. 702 would:
· Lift the decades old ban on crude oil exports;
· Generate $1.4 billion in profits to the federal government over the next 10 years from oil and gas leases, according to CBO;
· Lower gasoline prices by 1.5 to 13 cents per gallon according to the Government Accountability Office;
· Support up to 964,000 additional U.S. jobs according to IHS;
· Allow the U.S. to help our allies, enhance our energy security, and weaken OPEC and Russia’s monopoly power; and
· Strengthen the 60-Ship Maritime Security Fleet, assuring United States flag ships and crews will be available to support the military in defense of our nation and allies.
Guthrie: “It’s bills like these that have a real, positive impact on the lives of folks in Kentucky and all across the country.”
WASHINGTON, DC – This week both the U.S. House and Senate approved H.R. 1624, the Protecting Affordable Coverage for Employees Act, authored by Energy and Commerce Health Subcommittee Vice Chairman Brett Guthrie (R-KY). President Obama has signaled his intent to sign this bill into law, helping to protect employees from cancelled health plans and rising health care premiums. The bill would also authorize $205 million for the Medicare Improvement Fund, which was cut by the president’s health law.
“The Energy and Commerce Committee has a proven record of thoughtful, bipartisan legislation to help protect the American people from costly consequences of the president’s health care law. I am proud to have helped lead the effort to protect American workers with this legislation. Our work is far from complete, but it’s bills like these that have a real, positive impact on the lives of folks in Kentucky and all across the country,” said Guthrie.
Full committee Chairman Fred Upton (R-MI) added, “Simply put, Brett Guthrie’s bipartisan solution will protect more than three million folks from higher premiums and cancellations. It’s a win for small businesses and their employees.”
On Thursday, the Environmental Protection Agency issued its final regulations revising the National Ambient Air Quality Standards for ground-level ozone from 75 parts per billion (ppb) to 70 ppb. Many states and counties around the country are still working to implement the 2008 standard yet EPA is pursuing stricter standards that threaten jobs and economic growth. Energy and Commerce Committee Chairman Fred Upton (R-MI) and Energy and Power Subcommittee Chairman Ed Whitfield (R-KY) commented that the administration was, “Pushing forward with what many experts predict will be the EPA’s costliest regulation in history and could very well be a last straw for our fragile economy.”
Energy and Commerce Committee member Rep. Bob Latta (R-OH) highlighted in an op-ed in The Hill the impact these regulations could have on his district, “I represent a district with about 60,000 manufacturing jobs. These hard working Americans in both small and large businesses should not be faced with the choice of complying with EPA regulations or staying in business.”
These regulations will threaten jobs, production, and economic growth. Hundreds of bipartisan local, state, and national elected leaders oppose this rule and support retaining the current standard.
October 1, 2015
EPA ozone rule costly, duplicative, unnecessary
By: Rep. Bob Latta
Soon, the U.S. Environmental Protection Agency’s proposed ozone rule is expected to go into effect. It stands to be the costliest regulation in history, imposing new standards that are overly burdensome, technically unattainable and deficiently demonstrative of providing any environmental or public health benefits.
Unfortunately, this administration has chosen to ignore the ramifications of this rule while promoting an increasingly radical environmental agenda. The argument in favor of this – and a growing number of new polices – builds upon a deceptive premise, one that implies the protection of our environment is incompatible with fostering the growth of our energy and manufacturing sectors.
This is a false choice. States and industry have already demonstrated the ability to balance environmental stewardship and promote the economic growth these industries have provided.
Recent data has shown that the adherence to current regulations – both state and federal – and to industry best practices, is already working to reduce ozone while still allowing for economic growth. The
EPA’s own data indicates that U.S. ozone precursor emissions have been cut in half since 1980, reducing ozone in the air by 33 percent.
This new ozone rule, proposed last year as part of the Administration’s climate agenda, will revise the EPA’s National Ambient Air Quality Standards (NAAQS) from the current standard of 75 parts per billion to a level between 65-70…
I represent a district with about 60,000 manufacturing jobs. These hard working Americans in both small and large businesses should not be faced with the choice of complying with EPA regulations or staying in business.
A recent poll showed 69 percent of Ohioans think a stricter ozone rule would make it harder for local businesses to start new operations or grow existing ones. This conclusion has also been reached by the manufacturing, energy, construction and transportation industries.
The EPA, when proceeding with new regulations, must take into consideration what is actually achievable, and what would cause significant harm to our economy. Recognizing the great burden the ozone rule would place on business both large and small across the country, Rep. Pete Olson (R-TX) and I recently reintroduced the Clean Air, Strong Economies (CASE) Act, which would require the EPA to include feasibility and economic impact assessments when issuing major rules under the Clean Air Act.
This bipartisan legislation would allow the agency to balance improving our air quality, while ensuring the process does the least harm to our economy.
We all want clean air. We want to preserve the environment for our children and future generations. We also need to create the best environment for our businesses to prosper. Despite what the administration is purporting, we are already demonstrating the ability to do both: preserving our environment and growing our economy through best practices, and commonsense regulations.
To read the full op-ed online, click here.
The Subcommittee on Health, chaired by Rep. Joe Pitts (R-PA), has scheduled a hearing for Thursday, October 8, 2015, at 10:15 a.m. in room 2322 of the Rayburn House Office Building. The hearing is entitled, “Examining Legislative Proposals to Combat our Nation’s Drug Abuse Crisis.” Subcommittee members will review a series of bipartisan bills to address the growing threat of drug abuse. The Oversight and Investigations Subcommittee has held five hearings over the past year and a half in an effort to better understand state and federal efforts to address this growing and complex crisis happening in communities across the country.
H.R. 2536, Recovery Enhancement for Addiction Treatment Act (TREAT Act), authored by Rep. Brian Higgins (D-NY), Rep. Richard Hanna (R-NY), Rep. Paul Tonko (D-NY), and Rep. John Katko (R-NY)
H.R. 2536 would lift the existing 100 patient cap on the nation’s 30,000 physicians who have waivers to prescribe buprenorphine to opioid addicted individuals. Additionally, the TREAT Act would provide prescribing privileges to nurse practitioners and physicians assistance and require an examination of how this legislation impacts treatment access and drug diversion.
H.R. 2805, the Heroin and Prescription Opioid Abuse Prevention, Education, and Enforcement Act of 2015, authored by Rep. Susan Brooks (R-IN) and Rep. Joseph Kennedy (D-MA)
H.R. 2805 would, among other things, establish a pain management best practices task force, establish a national prescription drug abuse education and awareness campaign, and create naloxone demonstration programs.
H.R. 2872, Opioid Addiction Treatment Modernization Act, authored by Rep. Larry Bucshon, M.D. (R-IN) and Rep. Steve Womak (R-AR)
H.R. 2872 would require all forms of FDA-approved medication-assisted treatment (MAT) for opioid addiction to be made available in federally-regulated Office-Based Opioid Treatment programs (OBOT). This bill would ensure that both opioid relapse prevention medication and opioid maintenance treatments are provided to patients based on their individual needs. Additionally, treatment plans that incorporate overdose and relapse prevention will be required in all OBOTs.
H.R. 3014, Medical Controlled Substances Transportation Act of 2015, authored by Rep. Pete Sessions (R-TX)
H.R. 3014 would amend the Controlled Substances Act to allow registered physicians to transport and administer controlled substances to patients at other practice settings and disaster areas if the physician enters into an agreement with the Drug Enforcement Agency.
H.R. 3537, Synthetic Drug Control Act of 2015, authored by Rep. Charlie Dent (R-PA), Rep. James Himes (D-CT), Delegate Eleanor Holmes Norton (D-D.C.), and Rep. David Jolly (R-FL)
H.R. 3537 would schedule certain designer drugs (phenylalkylamines) in schedule I of the Controlled Substances Act. H.R. 3537 would help stop the sale of deadly synthetic drugs
Draft legislation authored by Rep. Ben Ray Lujan (D-NM)
The Improving Treatment for Pregnant and Postpartum Women Act would create a pilot program within the existing Residential Treatment for Pregnant Women and Postpartum Women (PPW) grant program to allow states to provide outpatient substance abuse treatment, prevention, and recovery support services to pregnant and postpartum women.
Draft legislation authored by Rep. John Sarbanes (D-MD
The Co-Prescribing to Reduce Overdoses Act would expand access to opioid overdose reversal drugs, such as naloxone, to at-risk patients as well as promote the development of overdose reversal prescribing guidelines.
The Majority Memorandum, a witness list, and witness testimony will be available here as they are posted.
WASHINGTON, DC – As part of its ongoing investigation into Volkswagen’s emissions issues, the Subcommittee on Oversight and Investigations, chaired by Rep. Tim Murphy (R-PA), has scheduled a hearing for Thursday, October 8, at 10 a.m. in room 2123 of the Rayburn House Office Building. The hearing is entitled, “Volkswagen’s Emissions Cheating Allegations: Initial Questions.”
Volkswagen Group of America President and CEO Michael Horn and the Environmental Protection Agency are scheduled to testify as the subcommittee investigates Volkswagen’s alleged efforts to circumvent emissions requirements for certain models of diesel engine passenger vehicles. Members are working to understand the facts and circumstances surrounding Volkswagen’s reported Clean Air Act violations and what they mean for consumers and the general public.
“There are serious issues raised by reports that Volkswagen installed so-called ‘defeat-devices’ in some of their diesel vehicles to circumvent decades old rules in place to protect public health,” said Murphy. “The American people want to know why these devices were in place, how the decision was made to install them, and how they went undetected for so long. We will get them those answers.”
“The very notion of a carmaker intentionally violating our environmental laws is beyond belief. Those of us from Michigan take great pride in having a hand in many of the cars on the road today and we appreciate the challenges automakers face to meet consumer demands year after year,” added full committee Chairman Fred Upton (R-MI). “But reports of Volkswagen selling cars with devices aimed at skirting the law cannot, and will not be tolerated. Attempting to deceive regulators and customers is a double whammy of betrayal. We will get to the bottom of this.”
On Tuesday, Upton and Murphy along with full committee Ranking Member Frank Pallone, Jr. (D-NJ) and subcommittee Ranking Member Dianna DeGette (D-CO) wrote to Volkswagen and the EPA requesting information about these issues. More on the committee’s letters here.
The Majority Memorandum, a witness list, and witness testimony will be available here as they are posted.
2125 Rayburn HOB
Washington, DC 20515