A bill to authorize the Secretary of the Interior, through the Bureau of Reclamation, to conduct a feasibility study on a water conservation project within the Arch Hurley Conservancy District in the State of New Mexico, and for other purposes.

Mr. President, I am pleased today to join with my colleague Senator DeWine to introduce legislation to protect the most vulnerable members of our society: newborn infants. As a first-time dad of a 20- month old baby girl, I now know the joy of being able to experience every pleasure that comes with being a father. What I also now share with parents everywhere is a constant sense of worry about whether our kids are doing well, are feeling well, and are safe. Nothing is of greater importance than the health and well-being of our children.

Thanks to incredible advances in medical technology, it is now possible to test newborns for more than 30 genetic and metabolic disorders. Many of these disorders, if undetected, would lead to severe disability or death. However, babies that are properly diagnosed and treated can go on to live healthy lives. In the most direct sense, newborn screening saves lives.

Frighteningly, the disorders that newborn screening tests for can come without warning. For most of these disorders, there is no medical history of the condition in the family, no way to predict the health of a baby based on the health of the parents. Although the disorders that are tested for are quite rare, there is a chance that any one newborn will be affected--a sort of morbid lottery. In that sense, this is an issue that has a direct impact on the lives of every family.

Fortunately, screening has become common practice in every State. Each year, over four million infants have blood taken from their heel to detect these disorders that could threaten their life and long-term health. As a result, about one in 4,000 babies is diagnosed with one of these disorders. That means that newborn screening could save approximately 1,000 lives each year. That is 1,000 tragedies that can possibly be averted--families left with the joy of a new infant rather than absolute heartbreak.

That is the good news. However, there is so much more to be done. For every baby saved, another two are estimated to be born with potentially detectable disorders that go undetected because they are not screened. These infants and their families face the prospect of disability or death from a preventable disorder. Let me repeat that--disability or death from a preventable disorder. The survival of a newborn may very well come down to the State in which it is born. Only two States, including my home state of Connecticut thanks to recent legislation, will test for all 30 disorders. While the number of genetic and metabolic disorders screened for varies among different states, the vast majority test for eight or fewer.

The General Accounting Office, GAO, released a report in March highlighting the need for this legislation. According to the report, most States do not educate parents and health care providers about the availability of tests beyond what is mandated by the State. States also reported that they do not have the

resources to purchase the technology and train the staff needed to expand newborn screening programs. Finally, even when States do detect an abnormal screening result, the majority do not inform parents directly.

Last year, I chaired a hearing on this issue during which I related a story that illustrates the impact of newborn screening, or the lack of newborn screening, in a very personal sense. Jonathan Sweeney is a three-year-old from Brookfield, CT. At the time of his birth, the State only tested for eight disorders. He was considered a healthy baby, although he was a poor sleeper and needed to be fed quite frequently. One morning in December of 2000, Jonathan's mother, Pamela, found Jonathan with his eyes wide open but completely unresponsive. He was not breathing and appeared to be having a seizure. Jonathan was rushed to the hospital where, fortunately, his life was saved. He was later diagnosed with L-CHAD, a disorder that prevents Jonathan's body from turning fat into energy.

Despite this harrowing tale, Jonathan and his family are extremely fortunate. Jonathan is alive, and his disorder can be treated with a special diet. He has experienced developmental delays that most likely could have been avoided had he been tested for L-CHAD at birth. This raises a question. Why was he not tested? Why do 47 States still not test for L-CHAD?

The primary reason for this unfortunate reality is the lack of a consensus on the Federal level about what should be screened for, and how a screening program should be developed. Twenty disorders can only be detected using a costly piece of equipment called a Tandem Mass Spectrometer. Currently, only 21 States have this resource.

Many health care professionals are unaware of the possibility of screening for disorders beyond what their State requires. Parents, and I include myself, are even less well-informed. My daughter Grace was born in Virginia, where they screen for nine disorders. I was extremely relieved when all of those tests came out negative. However, at that time I did not know that this screening was not as complete as it could have been. My ignorance had nothing to do with my love for my daughter or my capability as a parent. The fact is that the majority of parents do not realize that this screening occurs at all, nor are they familiar with the disorders that are being screened for. In fact, only one out of four States inform parents that they have the option to obtain testing for disorders that are not included on the State's screening program. For that reason, one of the most important first steps that we can take to protect our children is to educate parents and health care professionals.

In the Children's Health Act of 2000, I supported the creation of an advisory committee on newborn screening within the Department of Health and Human Services. The purpose of this committee would be to develop national recommendations on screening, hopefully eliminating the arbitrary disparities between states that currently exist. The Children's Health Act also included a provision to provide funding to States to expand their technological resources for newborn screening. Unfortunately, funds were not appropriated for either of these provisions. Senator DeWine and I have led a campaign to secure $25 million in appropriations needed for this crucial initiative. It is unconscionable for us to not do all we can to help prevent children from dying of treatable disorders.

The legislation that we are introducing today, the Newborn Screening Saves Lives Act of 2003, seeks to address the shocking lack of information available to health care professionals and parents about newborn screening. Every parent should have the knowledge necessary to protect their child. The tragedy of a newborn's death is only compounded by the frustration of learning that the death was preventable. This bill authorizes $10 million in fiscal year 2004, and such sums as are necessary through fiscal year 2008, to HRSA for grants to provide education and training to health care professionals, State laboratory personnel, families and consumer advocates.

Our legislation will also provide States with the resources to develop programs of follow-up care for those children diagnosed by a disorder detected through newborn screening. While these families are the fortunate ones, in many cases they are still faced with the prospect of extended and complex treatment or major lifestyle changes. We need to remember that care does not stop at diagnosis. For that reason, this bill authorizes $5 million in fiscal year 2004, and such sums as are necessary through FY 2008, to HRSA for grants to develop a coordinated system of follow-up care for newborns and their families after screening and diagnosis.

Finally, the bill directs HRSA to assess existing resources for education, training, and follow-up care in the States, ensure coordination, and minimize duplication; and also directs the Secretary to provide an evaluation report to Congress two and a half years after the grants are first awarded and then after five years to assess impact and effectiveness and make recommendations about future efforts.

I urge my colleagues to support this important initiative so that every newborn child will have the opportunity for a long, healthy and happy life; and to spare thousands of families from an avoidable tragedy.

I ask unanimous consent that the text of the bill be printed in the Record.

Mr. President, I ask unanimous consent that the Committee on Armed Services be authorized to meet during the session of the Senate on April 28, 2004, at 11 a.m., in closed session, to receive a briefing regarding the performance of force protection equipment for ground forces in Iraq, including the up-armored HMMWV, and potential alternatives to meet force protection needs of the combatant commander.

Mr. President, I ask unanimous consent that the Committee on Commerce, Science, and Transportation be authorized to meet on Wednesday, April 28, 2004, at 9:30 a.m., on Telecommunications Policy Review: A Look Ahead, in SR-253.

Mr. President, I ask unanimous consent that the Committee on Energy and Natural Resources be authorized to meet during the session of the Senate, on Wednesday, April 28 at 11:30 a.m. to consider pending calendar business.

Agenda Item 1: S. 203--A bill to open certain withdrawn land in Big Horn County, WY to locatable mineral development for bentonite mining.

Agenda Item 5: S. 1071--A bill to authorize the Secretary of the Interior, through the Bureau of Reclamation, to conduct a feasibility study on a water conservation project within the Arch Hurley Conservancy District in the State of New Mexico, and for other purposes.

Agenda Item 6: S. 1097--A bill to authorize the Secretary of the Interior to implement the Calfed Bay-Delta Program.

Agenda Item 9: S. 1467--A bill to establish the Rio Grande Outstanding Natural Area in the State of Colorado, and for other purposes.

Agenda Item 10: S. 1582--A bill to amend the Valles Preservation Act to improve the preservation of the Valles Caldera, and for other purposes.

Agenda Item 11: S. 1649--A bill to designate the Ojito Wilderness Study Area as wilderness, to take certain land into trust for the Pueblo of Zia, and for other purposes.

Agenda Item 12: S. 1687--A bill to direct the Secretary of the Interior to conduct a study on the preservation and interpretation of the historic sites of the Manhattan Project for potential inclusion in the National Park System.

Agenda Item 13: S. 1778--A bill to authorize a land conveyance between the United States and the City of Craig, AK, and for other purposes.

Agenda Item 14: S. 1791--A bill to amend the Lease Lot Conveyance Act of 2002 to provide that the amounts received by the United States under that Act shall be deposited in the reclamation fund, and for other purposes.

Agenda Item 15: S. 2180--A bill to direct the Secretary of Agriculture to exchange certain lands in the Arapaho and Roosevelt National Forests in the State of Colorado.

Agenda Item 16: S. Res. 321--A resolution recognizing the loyal service and outstanding contributions of J. Robert Oppenheimer to the United States and calling on the Secretary of Energy to observe the 100th anniversary of Dr. Oppenheimer's birth with appropriate programs at the Department of Energy and the Los Alamos National Laboratory.

Agenda Item 20: H.R. 1521--To provide for additional lands to be included within the boundary of the Johnstown Flood National Memorial in the State of Pennsylvania, and for other purposes.

Agenda Item 21: H.R. 3249--To extend the term of the Forest Counties Payments Committee.

In addition, the Committee may turn to any other measures that are ready for consideration.

Mr. President, I ask unanimous consent that the Committee on Environment and Public Works be authorized to meet on Wednesday, April 28th at 9:30 a.m. to conduct a hearing to receive testimony on the reauthorization of the Economic Development Administration.

The hearing will be held in SD 406, hearing room.

Mr. President, I ask unanimous consent that the Committee on Finance be authorized to meet during the session on Wednesday, April 28, 2004, at 10 a.m., in 215 Dirksen Senate Office Building, to hear testimony on ``Taking the Taxpayers for a Ride: Fraud and Abuse in the Power Wheelchair Program.''

Mr. President, I ask unanimous consent that the Committee on Foreign Relations be authorized to meet during the session of the Senate on Wednesday, April 28, 2004 at 10 a.m. to hold a Nomination hearing.

Mr. President, I ask unanimous consent that the Committee on Foreign Relations be authorized to meet during the session of the Senate on Wednesday, April 28, 2004 at 3 p.m. to hold a Nomination hearing.

Mr. President, I ask unanimous consent that the Committee on Governmental Affairs be authorized to meet on Wednesday, April 28, 2004, at 10 a.m. for a hearing titled ``Government Purchase Cards: Smarter Use Can Save Taxpayers Hundreds of Millions of Dollars.''

Mr. President, I ask unanimous consent that the Committee on Indian Affairs be authorized to meet on Wednesday, April 28, 2004, at 10 a.m. in room 485 of the Russell Senate Office Building to conduct a hearing on S. 2172, Tribal Contract Support Cost Technical Amendments of 2004.

Mr. President, I ask unanimous consent that the Committee on the Judiciary be authorized to meet to conduct a hearing on Wednesday, April 28, 2004 at 2 p.m. on ``The Playwrights Licensing Antitrust Initiative Act: Safeguarding the Future of American Live Theater'' in the Dirksen Senate Office Building, Room 226

Witness List

Arthur Miller, Playwright (Death of a Salesman, The Crucible, All My Sons); Roxbury, CT.

Stephen Sondheim, Lyricist (West Side Story, Gypsy, Sweeney Tood); New York, NY.

Wendy Wasserstein, Playwright (Uncommon Women and Others, Isn't It Romantic, The Heidi Chronicles); New York, NY.

Gerald Schoenfeld, Chairman, League of American Theaters and Producers; Chairman, The Shubert Organization; New York, NY.

Roger Berlind, Producer, Berlind Productions (Kiss Me Kate, City of Angels, Wonderful Town, Caroline or Change); New York, NY.

Mr. President, I ask unanimous consent that the Committee on Small Business and Entrepreneurship be authorized to meet during the session of the Senate for a hearing entitled, ``Impact of Stock Option Expensing on Small Businesses'' on Wednesday, April 28, 2004, beginning at 10 a.m. in Room 428A of the Russell Senate Office Building.

Mr. President, I ask unanimous consent that the Joint Economic Committee be authorized to conduct a hearing in Room 628 of the Dirksen Senate Office Building, Wednesday, April 28, 2004, from 10 a.m. to 1 p.m.

Mr. President, I ask unanimous consent that the Select Committee on Intelligence be authorized to meet during the session of the Senate on April 28, 2004, at 2:30 p.m., to hold a closed hearing on Intelligence Matters.

Mr. President, I ask unanimous consent that the Committee on Health, Education, Labor, and Pensions, Subcommittee on Children and Families, be authorized to meet for a hearing on Healthy Marriage: What is it and why should we promote it? During the session of the Senate on Wednesday, April 28, 2004, at 2 p.m.

Mr. President, I ask unanimous consent that the Committee on Health, Education, Labor, and Pensions, Subcommittee on Substance Abuse and Mental Health Services be authorized to meet for a hearing on Mental Health in Children and Youth: Issues Throughout the Development Process during the session of the Senate on Wednesday April 28, 2004, at 10 a.m.

Mr. President, I ask unanimous consent that the Committee on Banking, Housing, and Urban Affairs be authorized to meet during the session of the Senate on October 15, 2003, at 9:30 a.m., to conduct a markup of S. 811, the ``American Dream Downpayment Act'', of S. 300, the ``Jackie Robinson Congressional Gold Medal bill.'' The committee will also vote on the nominations of Mr. Harvey S. Rosen, of New Jersey, and Ms. Kristin J. Forbes, of Massachusetts, to be members of the Council of Economic Advisors; Ms. Julie L. Myers, of Kansas, to be Assistant Secretary of Commerce for Export Enforcement; and Mr. Peter Lichtenbaum, of Virginia, to be Assistant Secretary of Commerce for Export Administration.

Following the votes, the Subcommittee on Securities and Investment will meet in open session to conduct a hearing on ``The Future of the Securities Markets.''

Mr. President, I ask unanimous consent that the Committee on Environment and Public Works be authorized to meet on Wednesday, October 15, at 9:30 to conduct a business meeting to consider legislation S. 1643, S. 1066, S. 1663, and S. 1669, and the nomination of Michael O. Leavitt, to be Administrator of the U.S. Environmental Protection Agency.

The meeting will take place in SD 406, hearing room.

committee on finance

Mr. President, I ask unanimous consent that the Committee on Finance be authorized to meet during the session on Wednesday, October 15, 2003, at 10 a.m., to hear testimony on ``Company Owned Life Insurance.''

Mr. President, I ask unanimous consent that the Committee on Foreign Relations be authorized to meet during the session of the Senate on Wednesday, October 15, 2003, at 2 p.m. to hold a hearing on The Middle East Road Map: Overcoming Obstacles to Peace.

THE PRESIDING OFFICER. Without objection, it is so ordered.

committee on indian affairs

Mr. President, I ask unanimous consent that the Committee on Indian Affairs be authorized to meet on Wednesday, October 15, 2003, at 10 a.m. in Room 485 of the Russell Senate Office Building to conduct a Hearing on S. 550, the American Indian Probate Reform Act of 2003.

Mr. President, I ask unanimous consent that the Committee on the Judiciary be authorized to meet to conduct a Judicial Nominations hearing on Wednesday, October 15, 2003, at 10:00 a.m. in the Dirksen Office Building room 226.

Agenda

Panel I: Senators.

Panel II: D. Michael Fisher to be United States Circuit Judge for the Third Circuit.

Panel III: Dale S. Fisher to be United States District Judge for the Central District of California; Gary L. Sharpe to be United States District Judge for the Northern District of New York.

Mr. President, I ask unanimous consent that the Committee on the Judiciary be authorized to meet to conduct a hearing on Wednesday, October 15, 2003, at 2:00 p.m. on ``Indecent Exposure: Oversight of DOJ's Efforts to Protect Pornography's Victims,'' in the Dirksen Senate Office Building room 226.

Witness List

Panel 1: Mr. John Malcolm, Deputy Assistant Attorney General, Criminal Division, Department of Justice, Washington D.C., Mr. J. Robert Flores, Administrator, Office of Juvenile Justice and Delinquency Prevention, Department of Justice, Washington D.C.; Mr. Lawrence E. Maxwell, Inspector in Charge, Fraud and Dangerous Mail Investigations, United States Postal Inspectors, Washington D.C.; Honorable Mary Beth Buchanan, U.S. Attorney

for the Western District of Pennsylvania, Pittsburgh, PA.

Panel 2: Mr. Bruce A. Taylor, President and Chief Counsel, National Law Center for Children and Families, Fairfax, VA; Mr. Victor Cline, Emeritus Professor, University of Utah, Salt Lake City, UT; Mr. Steve Takeshita, Officer in Charge, Pornography Unit, Organized Crime and Vice Division, Los Angeles Police Department, Los Angeles, CA.

Mr. President, I ask unanimous consent that the Subcommittee on Water and Power of the Committee on Energy and Natural Resources be authorized to meet during the session of the Senate on Wednesday, October 15, at 2:30 p.m.

The purpose of the hearing is to receive testimony on S. 943, a bill to authorize the Secretary of the Interior to enter into one or more contracts with the city of Cheyenne, Wyoming, for the storage of water in the Kendrick project; S. 1027 and H.R. 2040, bills to amend the Irrigation Project Contract Extension Act of 1998 to extend certain contracts between the Bureau of Reclamation and certain irrigation water contractors in the States of Wyoming and Nebraska; S. 1058, a bill to provide a cost-sharing requirement for the construction of the Arkansas Valley Conduit in the State of Colorado; S. 1071, a bill to authorize the Secretary of the Interior, through the Bureau of Reclamation, to conduct a feasibility study on a water conservation project within the Arch Hurley Conservancy District in the State of New Mexico, and for other purposes; S. 1307, a bill to authorize the Secretary of the Interior, acting through the Bureau of Reclamation, to assist in the implementation of fish passage and screening facilities at non Federal water projects, and for other purposes; S. 1308, a bill to authorize the Secretary of the Interior to pursue and complete actions related to the implementation of a U.S. District of a U.S. district court consent decree; S. 1355, a bill to authorize the Bureau of Reclamation to participate in the rehabilitation of the Wallowa Lake Dam in Oregon, and for other purposes; S. 1577, a bill to extend the deadline for commencement of construction of a hydroelectric project in the State of Wyoming; H.R. 1284, a bill to amend the Reclamation Projects Authorization and Adjustment Act of 1992 to increase the Federal share of the costs of the San Gabriel Basin Demonstration Project; and S. Res. 183, a resolution commemorating 50 years of adjudication under the McCarran amendment of rights to the use of water.

Mr. President, I have sought recognition to comment on legislation I am introducing today to ensure that veterans across the Nation have access to burial in national and State cemeteries. This legislation will put in place a comprehensive strategy for addressing what has, and will continue to be, a national priority: providing lasting memorials to our veterans.

Four principles guide this legislation: First, areas with large veterans' populations merit a national cemetery. Second, State cemetery grant funding should encourage the development of State cemeteries to serve areas with smaller veterans' populations. Third, State or national cemeteries should be located within reasonable distances of where veterans lived before death and, presumably, where their families still live. And finally, we need creative ways to finance the maintenance, repair and operational needs of national cemeteries.

This bill sets out clear criteria, based on objective measures of need, that will serve as a guide for future national cemetery construction. It encourages States to participate in the State cemetery grant program by permitting State cemeteries to receive plot allowance money to defray burial expenses for all--not just poor, disabled and wartime--veterans. Lastly, the legislation authorizes VA's National Cemetery Administration, NCA, to enter into lease agreements with public or non-profit organizations who wish to use unused or underutilized land and facilities, and permits proceeds from lease agreements to remain with NCA to augment its operational and cemetery maintenance needs.

Burial in a national cemetery--a perpetual tribute to a veteran's service to the country--is one of the most important benefits we, as a Nation, can provide to veterans and their families. It must be available to veterans, and their families, within reasonable distances to their homes. This legislation would require the Department of Veterans Affairs to establish a national cemetery at sites more than 50 miles away from an open national or State veterans cemetery where 170,000 or more veterans reside. The adoption of this criterion would assure adequate national access to national cemeteries and would require the opening of approximately five new national cemeteries.

Because it is not practical to build national cemeteries to meet the burial needs of every veteran--particularly veterans in more sparsely populated areas--it is important that VA cooperate with the States through administration of its State cemetery grant program, to meet needs in areas where there are smaller veterans' populations. These grants provide up to 100 percent of the costs associated with building, making large repairs at, and expanding State veterans cemeteries. In addition, States are also provided a $300 plot allowance, payable by VA to assist in offsetting maintenance costs, for each poor, disabled, or wartime veteran who is interred in a State cemetery. If, as this legislation would specify, the plot allowance were to be payable for burial of all veterans--not just poor, disabled and wartime veterans-- States would be provided with additional maintenance income and further incentive to establish additional State veterans' cemeteries. Clearly, encouraging the construction of additional State cemeteries is a good way to complement VA's National cemetery capacity within the context of a nationwide, comprehensive strategy to meet veterans' burial needs.

Finally, my legislation proposes a creative way for NCA to fund additional maintenance projects at national cemeteries. It would authorize the Secretary to lease undeveloped, unused or underutilized acreage and buildings on NCA lands, and to retain the proceeds from the leases. VA has indicated that portions of many national cemeteries are not suitable for burials due to, for example, rocky or hilly terrain. Such sites, however, might have commercial uses. In addition, there are historic lodges and other buildings on VA lands that, if available for use, could generate revenue. Allowing NCA to utilize these resources to generate revenue would provide VA with an opportunity to put a small dent in the $245 million worth of repairs it needs to undertake to bring the national cemeteries up to appropriate memorial standards. This sort of leasing authority is already extended to VA's hospital system, and it has been successfully utilized on VA's medical campuses. An extension of this authority to VA cemetery facilities is wholly reasonable.

I ask my colleagues for their support of this bill. I reiterate, meeting the burial needs of veterans is a national

priority. It is a powerful reflection of the value we place on military service. And it is an unmistakable message we send to all Americans that service to our country will forever be remembered.

I ask unanimous consent that the text of the bill be printed in the Record.

Mr. President, I rise today, along with my colleague from Connecticut, Senator Dodd, to introduce the Newborn Screening Saves Lives Act of 2003, a bill designed to improve genetic newborn screening programs in this country. Our legislation would provide education grants for physicians and parents, as well as grants to states, to improve follow-up and tracking of those children who receive a positive result from a heelstick screening for metabolic, genetic, infectious, or other congenital conditions that threaten their health and well- being.

Each year, newborn screening identifies an estimated 3,000 babies with conditions like sickle cell diseases and homocystinuria that, if left undetected, would otherwise have had dire consequences. But, despite their clear importance, our newborn screening systems are fragmented. Quite simply, all children do not have access to the same genetic tests. Where a child is born determines the tests that he or she receives. In my home state of Ohio, we test for 12 disorders, while right across the border in Kentucky, they test for only four, and in Pennsylvania, only six. In Massachusetts, on the other hand, newborns are tested for 29 disorders.

Compounding this problem, parents often are not sufficiently informed of the number of tests available in their individual states and what those tests can help accomplish. Physicians may not know to educate parents, or physicians may talk to parents too late in the birthing process for it to make a difference. Also, state health departments may not follow up adequately with the parents of a child who receives a positive test result, and health departments may not have the capacity to effectively record or track a large number of positive results.

The bill we are introducing today would go a long way toward streamlining the current newborn screening system by offering grants to states to accomplish the following:

Build and expand existing procedures and systems to report test results to individuals and families, primary care physicians, and specialists;

Coordinate ongoing follow-up treatment with individuals, families, and primary care physicians after a newborn receives an indication of the presence of a disorder on a screening test;

Ensure seamless integration of confirmatory testing, tertiary care, genetic services, including counseling, and access to evolving therapies by participation in approved clinical trials involving the primary health care of the infant; and

Analyze collected data to identify populations at high risk, examine and respond to health concerns, and recognize and address relevant environmental, behavioral, socioeconomic, demographic, and other factors.

Senator Dodd and I recently requested that the General Accounting Office examine state newborn screening programs. The results of this study were troubling. The GAO found that many children are not receiving critical, life-saving tests due, in part, to strained state budgets that cannot fund newborn screening initiatives.

The grant program established by our bill seeks to help states maintain and expand their newborn screening programs. Our legislation would be a good start toward ensuring that all newborns receive equal access to genetic tests and that their follow-up care, if needed, is available and coordinated. The importance of these screenings cannot be overstated. It can mean the difference between life and death for a newborn. And that, Mr. President, is something we must address.

I urge my colleagues to support this important children's health legislation.