|
|
|
|
|
|
|
"When we looked at the public-health relevance, there was no question that these projects should have been funded and should continue to be funded." NIH Director Elias Zerhouni The Chronicle of Higher Education, 1/13/04 ****** "I strongly urge the Members to resist the temptation to select a few grants for defunding because they do not like the sound of them based on one paragraph out of what probably was a number of pages of information. It would set a dangerous precedent and put a chill on medical research if we start to micromanage individual NIH grants. This has worked well over the years. We have had enormous progress because of these grants in achieving medical knowledge and giving the public a better health care system. I do not think this body, this committee, wants to get into the process of reviewing 120,000 grants and trying to pick 40,000 out of that group for funding." Rep. Ralph Regula -- Chairman, House Labor, Health and Human Services and Education Appropriations Subcommittee, fHouse floor July 11, 2003 ****** I have served on the subcommittee that deals with NIH for a long time, and the one thing I came to understand very quickly is that the day that we politicize NIH research, the day we decide which grants are going to be approved on the basis of a 10-minute horseback debate in the House of Representatives with 434 of the 435 Members in this place who do not even know what the grant is, that is the day we will ruin science research in this country. We have no business making political judgments about those kinds of issues. Rep. David Obey -- Ranking Member, House Labor, Health and Human Services and Education Appropriations Subcommittee, House floor July 11, 2003 ****** "When you look at the impact of sexually transmitted disease, you're talking about HIV/AIDS and many others that affect millions of people and their reproductive lives." NIH Director Elias Zerhouni USA Today, Jan. 13, 2004
****** "Decisions about medical research should be made by scientists, not by politicians promoting an ideological agenda.” Democratic House Leader Rep. Nancy Pelosi, July 2003
******
"Here we have people saying, 'I don't like how that disease was contracted, so I don't want to study that disease.' It's equivalent to sticking your head in the sand. It's very important that the scientific community rises up and objects to the imposition of ideology in these areas."
Alan Leshner, President and CEO, AAAS, Washington Post, 1/19/04
CPR sponsors Congressional briefing -- Lost in Translation: Public Health Implications of Sexual Health Research The Scientific, Public Health, and Advocacy Community Reacts NIH Responds to Congress (Download letter to Congress) CPR Sends Letter of Support to Dr. Zerhouni Dr. Zerhouni Sex-Related Research at NIH Addresses Critical Public Health Issues 2002 Surgeon General's Call to Action to Promote Sexual Health and Responsible Sexual Behavior
Become a Member of CPR - download membership form (pdf) ******
****************
For more information about the Coalition contact:
Angela Sharpe (COSSA) at (202) 842-3525
or
Karen Studwell (APA) at (202) 336-5585 |
Transcript of the Floor Debate on the 2005 Neugebauer Amendment to L-HHS Appropriations Bill
Mr. Regula) and the gentleman from Wisconsin (Mr. Obey) each will control 5 minutes. The Chair recognizes the gentleman from Ohio (Mr. Regula). Mr. REGULA. Mr. Chairman, I yield myself such time as I may consume. Mr. Chairman, these have all been agreed upon as part of the en bloc, and I would urge the Members to vote for it. Mr. OBEY. Mr. Chairman, will the gentleman yield? Mr. REGULA. I yield to the gentleman from Wisconsin. Mr. OBEY. Mr. Chairman, I would simply say that while I am dubious about the content of several of these amendments, in the interest of moving the bill forward, I would also urge that we accept the en bloc amendments and move on to the others. Mr. REGULA. Mr. Chairman, I thank the gentleman for helping us to work it out. Mr. LEACH. Mr. Chairman, will the gentleman yield? Mr. REGULA. I yield to the gentleman from Iowa. (Mr. LEACH asked and was given permission to revise and extend his remarks.) Mr. LEACH. Mr. Chairman, I would only say to my distinguished chairman, I realize how difficult these circumstances are. There is one amendment in that en bloc circumstance, the Neugebauer amendment, that I think the House should be alerted to. It could put us down a slippery slope of reviewing peer review scientific approaches; and since it is targeted at a program in a university in my district, I am particularly sensitive to it. But unrelated to the fact that it is in my district, this subject is something that I hope in the conference will get the attention of Members in terms of the overriding principle of whether we ought to be political seers overriding scientific peers. Secondly, in the statement I will submit for the RECORD, I have outlined a reason for this particular grant that is, in my view, again very compelling, which makes a political attack on it quite, again in my view, uncompelling. So at this time, I simply ask respectfully that the chairman and the ranking member give this perspective serious consideration as you move to conference.
Mr. Chairman, I recognize that sometimes committees decide to accept a series of amendments to bills ``en bloc'' on the House floor and then review them further in conference. In this circumstances, I rise to express a great disappointment that the committee has agreed to accept for the time being the Neugebauer amendment which represents a philosophical assault on the peer review process that serves as a hallowed barrier to scientific censorship. Mr. Chairman, the Neugebauer amendment is about exasperation with NIH research on non-humans--i.e., animals and birds--and targets a grant given a respected research institution in my District--the University of Iowa. First, let me stress that 60% of all human diseases are zoonotic--that is, derived or related to animals and birds. It is no accident that the remarkable results that have been obtained in developing miracle drugs and intervention approaches in so many diseases begins with research on animals and birds. Secondly, let me stress that NIH and NIMH operate in a more non-politicized manner than other governmental entities. All their research approaches are peer-reviewed by scientists across the country. We in Congress authorize the appropriations for NIH and NIMH, but scientists rather than politicians determine which research applications should be funded. Science, in this sense, by Congressional directive, has largely been de-politicized. As for this specific grant, the pigeon has been selected to study because it has a remarkably well developed visual system with such high acuity that it can make extraordinary decisions without the mediation of language. The research, which focuses on how the pigeon discriminates between visual stimuli, could be singularly important to our understanding of how brains and mental processes operate. The knowledge garnered is designed to be of particular use in the treatment of mental illnesses and disorders like autism and schizophrenia. Knowledge of the operation of advanced cognitive processes in the absence of language can also provide important clues to possible remedial methods that could be effective with language impaired human patients. New thinking and teaching methods which may develop from research on pigeons and other life forms could better enable impaired individuals to interact with a world of complex patterns and categories, thus allowing them to be productive decision-makers, less likely to need institutionalization. Mr. Chairman, let me reiterate that research with birds and animals is critical for human health. The pigeon may seem an obscure subject, but the application of research on this bird, which is so talented it can find its way home even if transported and released thousands of miles away, could be quite meaningful. There is no certainty any research approach will be productive, but there is certainty that politicizing science will shackle its potential for lengthening and ennobling life. Accordingly, I urge the committee as it reviews this ``en bloc'' amendment in conference to give particular attention to whether it wants to establish a precedent of political ``seers'' overriding scientific peers. This is a slippery slope that I hope conferees will not slide down.
Mr. KENNEDY of Rhode Island. Mr. Chairman, will the gentleman yield? Mr. REGULA. I yield to the gentleman from Rhode Island. Mr. KENNEDY of Rhode Island. Mr. Chairman, I am pleased that the chairman accepted an amendment that would strengthen the privacy safeguards within the Office of Information Technology to which our committee appropriated over $75 million for safeguarding information. Medical information is so critically important as we start to put together a national infrastructure of information technology that is interoperable and that is transparent and that will allow providers to adequately provide the care that they need to, with all of the knowledge of the patient's background that they need to have, in order to make the right decisions at the point of care. I thank the chairman for yielding to me and for supporting this amendment.
Mr. BUYER. Mr. Chairman, I rise to express my strong support for the Chairman REGULA's, amendment and urge my colleagues to vote in favor of increased funding for programs aimed at getting veterans into jobs. Mr. Chairman, the National Veterans Employment and Training Institute is run by the University of Colorado under contract to the Department of Labor. Their mission is to train Disabled Veteran Outreach Program Specialists and Local Veterans Employment Representatives (DVOPS and LVERs) how to place veterans who are seeking employment in good-paying jobs. I want to emphasize that DVOPS and LVERs are state employees who usually work for the state employment service. The extra 500 thousand dollars will allow NVTI to increase its training load for the next year by nearly 20 percent. That means that more DVOPS and LVERs will get basic and advanced training in such skills as case management, compliance investigation, job coaching, promoting partnerships, presentation skills, and Transition Assistance for those being discharged. The Homeless Veterans Reintegration Act, or HVRP, is designed to get homeless veterans off the streets and back into the labor market. The typical grantee provides the safe living quarters and supportive services to men and women who have hit bottom and are seeking a way out of what may have been decades of homelessness. Recent data indicates this is a highly cost effective program. For a program cost of a little over $2,200 per job placement averaging about $9.25 per hour, an HVRP client potentially returns about $2,800 in taxes per year to the federal government. I call that a good investment in human capital. The Chairman's amendment will add three million dollars to the $22 million proposed by the President. I salute the Chairman for his efforts on behalf of homeless veterans. This additional funding will provide opportunities for hundreds more homeless veterans. According to the Veterans Employment and Training staff, three million dollars will fund nine to 12 new grantees and service over 1,000 more homeless veterans. Surely, this is a worthy cause. Mr. Chairman, this is a good amendment that every Member can take pride in and I urge my colleagues to vote yes. Mr. WAXMAN. Mr. Chairman, I rise to offer an amendment to prohibit the Department of Health and Human Services from using political litmus tests in making appointments to scientific advisory committees. Advisory committees play a crucial role in the development of policy. That role is to offer policymakers the best available expertise on scientific matters. Science is not liberal or conservative. It is not Democratic or Republican. In order to develop the best policy, our government needs to hear the facts from the most qualified experts, regardless of their political affiliation. This common sense principle is widely accepted in the scientific community. It has been [Page: H5138] GPO's PDF endorsed by the National Academy of Sciences, the American Academy for the Advancement of Science, and numerous other scientific organizations. This amendment simply adopts this principle into policy. It would prohibit funding for any committee where members are chosen on the basis of political affiliation, unless required by law. Unfortunately, the current Administration has a terrible track record on this issue. It has repeatedly applied political litmus tests in making appointments to advisory committees. A nationally recognized expert on substance abuse was asked if he had voted for President Bush. After he answered honestly, he was not appointed. An expert in marine ecology was asked if she supported the President's economic and foreign policy agenda. After she told the truth, she was immediately dropped from consideration. A Nobel Prize winner was nominated for an important NIH panel on international health. According to a senior NIH official, he was not picked because he had ``signed too many full page letters in the Times.'' The Administration's use of political litmus tests has generated outrage in the scientific community. The editor of the journal Science has stated, ``I don't think any administration has penetrated so deeply into the advisory committee structure as this one, and I think it matters....... If you start picking people by their ideology instead of their scientific credentials, you are inevitably reducing the quality of the advisory group.'' These actions are unacceptable. Expert advisory panels should be filled with scientific experts, not party loyalists. This is the only way our government will have the information it needs to make the best policies on behalf of the American people. Our country's premier scientific organizations have affirmed the core principle that scientific advice should be provided by the best scientists. I urge my colleagues to endorse this principle and support this amendment. Mr. EMANUEL. Mr. Chairman, I rise today in support of the Markey-Emanuel amendment which is part of the en bloc amendment proposed by Chairman REGULA. Our amendment is simple and straightforward. It requires patients to be notified if their medical records contained in the new national health information network are lost, stolen or used for unauthorized purposes. While a national health information network could provide significant benefits for the entire medical community, that network must come with guaranteed privacy protections. As the revelations by MasterCard and Visa that the personal information of as many as 40 million customers was compromised demonstrates, identity theft has become an epidemic. A national health information network without strong privacy protections would undermine all of its other benefits. Without privacy protections, patients won't have confidence that their medical records will be kept confidential, which is essential to quality health care. In the 108th Congress, I introduced legislation to protect credit consumers' sensitive medical information. That bipartisan legislation was signed into law last year. By ``blacking out'' health information, we created a zone of privacy and gave consumers the confidence that their medical records are being protected. We should do the same thing here. Mr. Chairman, major data security breaches are occurring on a daily basis and identity theft is the fastest-growing white collar crime in the country. It's essential that we get this right at the beginning by making strong privacy protections a part of this health information network. Mr. MARKEY. Mr. Chairman, I rise in support of the Manager's amendment. The Manager's amendment includes an amendment that I filed to offer to the bill yesterday, which would address an important privacy protection issue. Mr. Chairman, the recent wave of massive data thefts has swept up the precious, private information of millions and millions of Americans. Everyday seems to bring new examples of gaping holes in databases being exploited by criminals: ChoicePoint, Lexis-Nexis, and CardSystems Solutions. These are just 3 recent examples of huge heists of personal information. And when Americans' financial records are drained from databases, does Federal law require the victims to be notified? No! When Americans' Social Security numbers are siphoned from databases by criminals, does Federal law require that the victims are at least notified? No! And, most importantly, when Americans' most private health information is plundered from databases, does Federal law require the victims to be notified? Shockingly, Unbelievably--No! Mr. Chairman, the bill before us today provides $75 million to support the creation of a new network of databases containing the health records of millions of Americans across the country. This new health information network will be, in effect, the ``Mother of All Databases.'' This network, when it is completed, will provide unprecedented access to the most private, personal health records of tens of millions of Americans. The nationwide network holds tremendous promise. But it also holds enormous peril for the privacy of Americans' medical records. That's because we know that databases currently maintained by the Federal government are vulnerable to infiltration by the data thieves. How do we know this? In February 2005, President Bush's Information Technology Advisory Committee reported that: The information technology infrastructure of the United States ..... is highly vulnerable to terrorist and criminal attacks and [T]he Federal Government needs to fundamentally improve its approach to cyber security. In May 2005, GAO reported that: [T]he Federal Government is limited in its ability to identify and respond to emerging cybersecurity threats, including sophisticated and coordinated attacks that target multiple federal entities. Even with the most sophisticated and modern cybersecurity, we have learned that reels of data can be lost off the back of a truck. While there is much we must and should do to minimize that loss of data, it is simply unforgivable to hide a known breach from the individuals whose personal data has fallen into unauthorized hands. An individual can sometimes take action to protect herself while authorities try to puzzle out what happened to cause a breach. At least they should know when they are at risk. A national health information network could provide significant benefits for patients, physicians, hospitals, and other health providers. But to realize these benefits, this new network must have strong privacy safeguards. My amendment, which is now part of the Manager's amendment, would simply require that patients whose health information is maintained by the Department of Health and Human Services as part of this new health records database must be notified if their records are lost, stolen or used for an unauthorized purpose. Our amendment would apply to the tens of millions of Medicare and Medicaid beneficiaries whose personally identifiable health information is maintained by the Federal Government. As the Department begins to develop the standards for this enormous database, privacy of patients must be a priority. As many of us know, people can be more concerned about their medical information being public than their financial information. There are things in medical records that people don't even tell members of their own families. We are at the dawn of the development of this new database. Now is the time to ensure that privacy is paramount. Our amendment will ensure that patients victimized when their health information in the database is stolen or misused are simply notified so they can take the necessary steps to protect themselves. In fact, the following 13 states already have enacted similar notification requirements for patients whose personal information has been stolen from electronic databases: Arkansas, Connecticut, Florida, Georgia, Illinois, Indiana, Maine, Minnesota, Montana, Nevada, North Dakota, Texas and Washington. This is a vital, common-sense amendment, and I am pleased that it has been incorporated into the Manager's amendment. I urge its adoption. Mr. WAXMAN. Mr. Chairman, I rise in support of the scientific peer review process at the National Institutes of Health and in opposition to the Neugebauer Amendment. For the third year in a row, the House is considering an attempt to score cheap political points at the expense of NIH research. This year's targets are two grants from the National Institutes of Mental Health. Both of these grants passed NIH's rigorous peer review process. This process involves two stages of review. In the first, scientists from leading institutions around the country make independent evaluations of each proposal. In the second stage, advisory councils with broad representation set priorities and approve the studies. Our system of peer review is the envy of the world, and for good reason: It is based on science, and it is immune from political interference. Congress should be proud of the NIH and what it has accomplished. Instead, this amendment strikes at the heart of scientific integrity at the agency. Supporters will say that the amendment is just about two grants. In their view, apparently, NIH should not be funding research in animal [Page: H5139] GPO's PDF models that can expand our understanding of brain disorders ..... or research on psychological distress and marriage that can reduce domestic violence. Just looking at the two grants, I am far from persuaded. Marriage is a key institution in our society, and we should use science to understand how it can be strengthened. Research in animal models has provided important insights into brain disorders. I fail to see any justification in eliminating the funding these grants. More fundamentally, it is inappropriate for us to be debating the merit of these grants in the U.S. House of Representatives. This is not a grant review panel. We are not scientific experts. Our country has succeeded by leaving scientific judgments to scientists, and we should continue to do so. Our Nation's research community is watching this House today. Universities and researchers want to know if they can do their jobs without wondering whether Congress will step in at the last moment to slander their research and sabotage their careers. The Administration is also opposed to this amendment. The Director of the National Institutes of Health Dr. Elias Zerhouni stated yesterday: Defunding meritorious grants on the floor of Congress is unjustified scientific censorship. It undermines the historical strength of American science, which is based on our world renowned, apolitical, and transparent peer review process. I hope these words give this House pause. Let us not vote for scientific censorship. Let us not undermine the historical strength of American science. To paraphrase the editors of the New England Journal of Medicine, let us not rub the gem of worldwide biomedical research in political dirt. I urge you to join me in rejecting this ill-advised amendment. Mr. NEUGEBAUER. Mr. Chairman, my amendment will prohibit the National Institute of Mental Health from further funding two grants whose research falls outside the mission set by NIMH. The amendment would not reduce overall research funding. Rather, it would focus the funding toward serious mental health issues. According to NIMH, its goal is to ``reduce the burden of mental illness and behavioral disorders'' and prevent ``disabling conditions that affect millions of Americans.'' This is a noble goal. Serious mental health diseases such as autism and Alzheimers do affect the lives of many Americans. And finding cures and treatments for these debilitating diseases is something we all hope for. This is why I was curious when I saw that two NIMH grants have been going on for years that do not focus on our most pressing mental health issues. For nearly 15 years, more than $1.5 million has been awarded to study ``Perceptual Bases of Visual Concepts.'' According to NIMH, this study trains pigeons to distinguish between natural and man made objects. Now on its fifth year, a second study has spent hundreds of thousands of taxpayer dollars to determine how the self-esteem of newlyweds affects their marriage. Now, I am a fan of marriage. In fact, I have actively participated in one for 35 years. But what does this research contribute to the effort to find better treatment, or even a cure, for Alzheimers or autism or Schizophrenia? Whatever scientific merits these research projects may have, they are not directed at serious mental health disorders. Sending millions of dollars to research that falls outside the mission of NIMH is problematic enough. However, this problem is compounded when you look at the list of grants that have been rejected over the same time period. If you look at the list, you will find grant after grant which specifically targets serious mental health diseases, such as schizophrenia and bipolar disorder. According to a 2003 study done by a group of mental health professionals and entitled, ``A Federal Failure in Psychiatric Research,'' only 1 out of every 17, 2002 research grants is reasonably likely to improve the treatment and quality of life for individuals presently affected by serious mental health illness. Some here today may feel hesitant about ending these grants. But, ladies and gentleman, as members of Congress, we must become better stewards of taxpayer dollars. I urge my colleagues to support research on serious mental health issues by supporting the Neugebauer amendment.
The CHAIRMAN. The question is on the amendments en bloc offered by the gentleman from Ohio (Mr. Regula). The amendments en bloc were agreed to.
Updated June 27, 2005 |
