Veterans' Burial Benefits Enhancement Act of 2003

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 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 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.

Mr. President, today, I join my colleagues from the Committee on Environment and Public Works in offering, by request, the Administration's recommended legislation to reauthorize the Nation's surface transportation program. I extend this courtesy, in large measure, out of respect for my long time friend and colleague, Secretary of Transportation Norman Mineta.

Norm and I served together, and worked together, for many years in the House. Norm is a leader on transportation, an author of many key aspects of our transportation law.

In the 107th Congress, as Chairman of the Committee, I reached out to Norm as we began our deliberations on reauthorization. He pledged then that U.S.

DOT would work closely with the Congress, and he kept his word. I appreciate his friendship and assistance.

The administration's proposal is a mixed bag. Its greatest strength is its continuity with its predecessors, ISTEA and TEA-21. These are landmarks in public policy, due in no small measure to the efforts and wisdom of Norm, Senator John Chafee, Senator Pat Moynahan and Congressman Bud Shuster. The administration package carries that legacy forward.

Its greatest weakness is its funding levels. The bill sets the right target with its emphasis on safety, but comes up short on the funding to hit that target. It continues programs that have produced better roads and stronger bridges in this country, but then fails to provide the dollars to continue this progress. It does less than is needed to address congestion and not enough to expand freight capacity.

Under Chairman Inhofe's leadership, we have fought for higher funding levels. We will continue that fight. I will not shortchange the Nation. I will not support any legislation that underfunds transportation.

The Administration's bill would modify our approach to environmental protection. My record on clean air, clean water and sound planning is clear and consistent. I want to strengthen our efforts, and will oppose any measure that reduces our vigilance in these areas. Our transportation investments should improve our environment, our air and water quality, should strengthen local economies and enhance our communities.

We will have a robust debate on these matters over the next few months. I look forward to working with my EPW colleagues, with Chairman Young and Mr. Oberstar in the House and with Secretary Mineta to renew our surface transportation program for a strong America.