[Congressional Record (Bound Edition), Volume 154 (2008), Part 15] [Senate] [Pages 20064-20067] [From the U.S. Government Publishing Office, www.gpo.gov]ALS REGISTRY ACT Mr. REID. One last thing, again, we have been told by our staffs that the ALS question you had has been all taken care of. I assume you will take a look at that and see if that, in fact, is the case. Mr. COBURN. Answering the majority leader through the Chair, my staff has advised me a moment ago that we have come to agreement on that. I have no objection to the way that is written at this time. Mr. REID. I ask unanimous consent that the Senate proceed to Calendar No. 518, the ALS Registry Act, that all after the enacting clause be stricken and that an amendment at the desk, consisting of a compromise amendment based on the language of subtitle A of title I of S. 3297 be inserted in lieu thereof; that the amendment be considered and agreed to; that the bill, as amended, be read a third time and passed; and the motion to reconsider be laid on the table. The PRESIDING OFFICER. Without objection, it is so ordered. The Senate proceeded to consider the bill (S. 1382) to amend the Public Health Service Act to provide for the establishment of an Amyotrophic Lateral Sclerosis Registry, which had been reported from the Committee on Health, Education, Labor, and Pensions, with an amendment to strike all after the enacting clause and insert in lieu thereof the following: SECTION 1. SHORT TITLE. This Act may be cited as the ``ALS Registry Act''. SEC. 2. AMENDMENT TO THE PUBLIC HEALTH SERVICE ACT. Part P of title III of the Public Health Service Act (42 U.S.C. 280g et seq.) is amended by adding at the end the following: ``SEC. 399R. AMYOTROPHIC LATERAL SCLEROSIS REGISTRY. ``(a) Establishment.-- ``(1) In general.--Not later than 1 year after the receipt of the report described in subsection (b)(2)(A), the Secretary, acting through the Director of the Centers for Disease Control and Prevention, shall-- ``(A) develop a system to collect data on amyotrophic lateral sclerosis (referred to in this [[Page 20065]] section as `ALS') and other motor neuron disorders that can be confused with ALS, misdiagnosed as ALS, and in some cases progress to ALS, including information with respect to the incidence and prevalence of the disease in the United States; and ``(B) establish a national registry for the collection and storage of such data to develop a population-based registry of cases in the United States of ALS and other motor neuron disorders that can be confused with ALS, misdiagnosed as ALS, and in some cases progress to ALS. ``(2) Purpose.--It is the purpose of the registry established under paragraph (1)(B) to-- ``(A) better describe the incidence and prevalence of ALS in the United States; ``(B) examine appropriate factors, such as environmental and occupational, that may be associated with the disease; ``(C) better outline key demographic factors (such as age, race or ethnicity, gender, and family history of individuals who are diagnosed with the disease) associated with the disease; ``(D) better examine the connection between ALS and other motor neuron disorders that can be confused with ALS, misdiagnosed as ALS, and in some cases progress to ALS; and ``(E) other matters as recommended by the Advisory Committee established under subsection (b). ``(b) Advisory Committee.-- ``(1) Establishment.--Not later than 180 days after the date of the enactment of this section, the Secretary, acting through the Director of the Centers for Disease Control and Prevention, shall establish a committee to be known as the Advisory Committee on the National ALS Registry (referred to in this section as the `Advisory Committee'). The Advisory Committee shall be composed of not more than 27 members to be appointed by the Secretary, acting through the Centers for Disease Control and Prevention, of which-- ``(A) two-thirds of such members shall represent governmental agencies-- ``(i) including at least one member representing-- ``(I) the National Institutes of Health, to include, upon the recommendation of the Director of the National Institutes of Health, representatives from the National Institute of Neurological Disorders and Stroke and the National Institute of Environmental Health Sciences; ``(II) the Department of Veterans Affairs; ``(III) the Agency for Toxic Substances and Disease Registry; and ``(IV) the Centers for Disease Control and Prevention; and ``(ii) of which at least one such member shall be a clinician with expertise on ALS and related diseases, an epidemiologist with experience in data registries, a statistician, an ethicist, and a privacy expert (relating to the privacy regulations under the Health Insurance Portability and Accountability Act of 1996); and ``(B) one-third of such members shall be public members, including at least one member representing-- ``(i) national and voluntary health associations; ``(ii) patients with ALS or their family members; ``(iii) clinicians with expertise on ALS and related diseases; ``(iv) epidemiologists with experience in data registries; ``(v) geneticists or experts in genetics who have experience with the genetics of ALS or other neurological diseases and ``(vi) other individuals with an interest in developing and maintaining the National ALS Registry. ``(2) Duties.--The Advisory Committee shall review information and make recommendations to the Secretary concerning-- ``(A) the development and maintenance of the National ALS Registry; ``(B) the type of information to be collected and stored in the Registry; ``(C) the manner in which such data is to be collected; ``(D) the use and availability of such data including guidelines for such use; and ``(E) the collection of information about diseases and disorders that primarily affect motor neurons that are considered essential to furthering the study and cure of ALS. ``(3) Report.--Not later than 270 days after the date on which the Advisory Committee is established, the Advisory Committee shall submit a report to the Secretary concerning the review conducted under paragraph (2) that contains the recommendations of the Advisory Committee with respect to the results of such review. ``(c) Grants.--The Secretary, acting through the Director of the Centers for Disease Control and Prevention, may award grants to, and enter into contracts and cooperative agreements with, public or private nonprofit entities for the collection, analysis, and reporting of data on ALS and other motor neuron disorders that can be confused with ALS, misdiagnosed as ALS, and in some cases progress to ALS after receiving the report under subsection (b)(3). ``(d) Coordination With State, Local, and Federal Registries.-- ``(1) In general.--In establishing the National ALS Registry under subsection (a), the Secretary, acting through the Director of the Centers for Disease Control and Prevention, shall-- ``(A) identify, build upon, expand, and coordinate among existing data and surveillance systems, surveys, registries, and other Federal public health and environmental infrastructure wherever possible, which may include-- ``(i) any registry pilot projects previously supported by the Centers for Disease Control and Prevention; ``(ii) the Department of Veterans Affairs ALS Registry; ``(iii) the DNA and Cell Line Repository of the National Institute of Neurological Disorders and Stroke Human Genetics Resource Center at the National Institutes of Health; ``(iv) Agency for Toxic Substances and Disease Registry studies, including studies conducted in Illinois, Missouri, El Paso and San Antonio, Texas, and Massachusetts; ``(v) State-based ALS registries; ``(vi) the National Vital Statistics System; and ``(vii) any other existing or relevant databases that collect or maintain information on those motor neuron diseases recommended by the Advisory Committee established in subsection (b); and ``(B) provide for research access to ALS data as recommended by the Advisory Committee established in subsection (b) to the extent permitted by applicable statutes and regulations and in a manner that protects personal privacy consistent with applicable privacy statutes and regulations. ``(2) Coordination with nih and department of veterans affairs.--Consistent with applicable privacy statutes and regulations, the Secretary shall ensure that epidemiological and other types of information obtained under subsection (a) is made available to the National Institutes of Health and the Department of Veterans Affairs. ``(e) Definition.--For the purposes of this section, the term `national voluntary health association' means a national non-profit organization with chapters or other affiliated organizations in States throughout the United States with experience serving the population of individuals with ALS and have demonstrated experience in ALS research, care, and patient services. ``(f) Authorization of Appropriations.--There are authorized to be appropriated to carry out this section, $2,000,000 for fiscal year 2008, $25,000,000 for fiscal year 2009, and $16,000,000 for each of fiscal years 2010 through 2012.''. SEC. 3. REPORT ON REGISTRIES. Not later than 18 months after the date of enactment of this Act, the Secretary of Health and Human Services shall submit to the appropriate committees of Congress a report outlining-- (1) the registries currently under way; (2) future planned registries; (3) the criteria involved in determining what registries to conduct, defer, or suspend; and (4) the scope of those registries. The report shall also include a description of the activities the Secretary undertakes to establish partnerships with research and patient advocacy communities to expand registries. The amendment (No. 5637) was agreed to, as follows: Strike all after the enacting clause and insert the following: SECTION 1. SHORT TITLE. This Act may be cited as the ``ALS Registry Act''. SEC. 2. AMENDMENT TO THE PUBLIC HEALTH SERVICE ACT. Part P of title III of the Public Health Service Act (42 U.S.C. 280g et seq.) is amended by adding at the end the following: ``SEC. 399R. AMYOTROPHIC LATERAL SCLEROSIS REGISTRY. ``(a) Establishment.-- ``(1) In general.--Not later than 1 year after the receipt of the report described in subsection (b)(2)(A), the Secretary, acting through the Director of the Centers for Disease Control and Prevention, may if scientifically advisable-- ``(A) develop a system to collect data on amyotrophic lateral sclerosis (referred to in this section as `ALS') and other motor neuron disorders that can be confused with ALS, misdiagnosed as ALS, and in some cases progress to ALS, including information with respect to the incidence and prevalence of the disease in the United States; and ``(B) establish a national registry for the collection and storage of such data to develop a population-based registry of cases in the United States of ALS and other motor neuron disorders that can be confused with ALS, misdiagnosed as ALS, and in some cases progress to ALS. ``(2) Purpose.--It is the purpose of the registry established under paragraph (1)(B) to-- ``(A) better describe the incidence and prevalence of ALS in the United States; ``(B) examine appropriate factors, such as environmental and occupational, that may be associated with the disease; ``(C) better outline key demographic factors (such as age, race or ethnicity, gender, and family history of individuals who are diagnosed with the disease) associated with the disease; ``(D) better examine the connection between ALS and other motor neuron disorders that can be confused with ALS, misdiagnosed as ALS, and in some cases progress to ALS; and ``(E) other matters as recommended by the Advisory Committee established under subsection (b). ``(b) Advisory Committee.-- ``(1) Establishment.--Not later than 180 days after the date of the enactment of this section, the Secretary, acting through the Director of the Centers for Disease Control and Prevention, may establish a committee to be known as the Advisory Committee on the National ALS Registry (referred to in [[Page 20066]] this section as the `Advisory Committee'). The Advisory Committee shall be composed of not more than 27 members to be appointed by the Secretary, acting through the Centers for Disease Control and Prevention, of which-- ``(A) two-thirds of such members shall represent governmental agencies-- ``(i) including at least one member representing-- ``(I) the National Institutes of Health, to include, upon the recommendation of the Director of the National Institutes of Health, representatives from the National Institute of Neurological Disorders and Stroke and the National Institute of Environmental Health Sciences; ``(II) the Department of Veterans Affairs; ``(III) the Agency for Toxic Substances and Disease Registry; and ``(IV) the Centers for Disease Control and Prevention; and ``(ii) of which at least one such member shall be a clinician with expertise on ALS and related diseases, an epidemiologist with experience in data registries, a statistician, an ethicist, and a privacy expert (relating to the privacy regulations under the Health Insurance Portability and Accountability Act of 1996); and ``(B) one-third of such members shall be public members, including at least one member representing-- ``(i) national and voluntary health associations; ``(ii) patients with ALS or their family members; ``(iii) clinicians with expertise on ALS and related diseases; ``(iv) epidemiologists with experience in data registries; ``(v) geneticists or experts in genetics who have experience with the genetics of ALS or other neurological diseases and ``(vi) other individuals with an interest in developing and maintaining the National ALS Registry. ``(2) Duties.--The Advisory Committee may review information and make recommendations to the Secretary concerning-- ``(A) the development and maintenance of the National ALS Registry; ``(B) the type of information to be collected and stored in the Registry; ``(C) the manner in which such data is to be collected; ``(D) the use and availability of such data including guidelines for such use; and ``(E) the collection of information about diseases and disorders that primarily affect motor neurons that are considered essential to furthering the study and cure of ALS. ``(3) Report.--Not later than 270 days after the date on which the Advisory Committee is established, the Advisory Committee may submit a report to the Secretary concerning the review conducted under paragraph (2) that contains the recommendations of the Advisory Committee with respect to the results of such review. ``(c) Grants.--The Secretary, acting through the Director of the Centers for Disease Control and Prevention, may award grants to, and enter into contracts and cooperative agreements with, public or private nonprofit entities for the collection, analysis, and reporting of data on ALS and other motor neuron disorders that can be confused with ALS, misdiagnosed as ALS, and in some cases progress to ALS after receiving the report under subsection (b)(3). ``(d) Coordination With State, Local, and Federal Registries.-- ``(1) In general.--In establishing the National ALS Registry under subsection (a), the Secretary, acting through the Director of the Centers for Disease Control and Prevention, may-- ``(A) identify, build upon, expand, and coordinate among existing data and surveillance systems, surveys, registries, and other Federal public health and environmental infrastructure wherever possible, which may include-- ``(i) any registry pilot projects previously supported by the Centers for Disease Control and Prevention; ``(ii) the Department of Veterans Affairs ALS Registry; ``(iii) the DNA and Cell Line Repository of the National Institute of Neurological Disorders and Stroke Human Genetics Resource Center at the National Institutes of Health; ``(iv) Agency for Toxic Substances and Disease Registry studies, including studies conducted in Illinois, Missouri, El Paso and San Antonio, Texas, and Massachusetts; ``(v) State-based ALS registries; ``(vi) the National Vital Statistics System; and ``(vii) any other existing or relevant databases that collect or maintain information on those motor neuron diseases recommended by the Advisory Committee established in subsection (b); and ``(B) provide for research access to ALS data as recommended by the Advisory Committee established in subsection (b) to the extent permitted by applicable statutes and regulations and in a manner that protects personal privacy consistent with applicable privacy statutes and regulations. ``(2) Coordination with nih and department of veterans affairs.--Consistent with applicable privacy statutes and regulations, the Secretary may ensure that epidemiological and other types of information obtained under subsection (a) is made available to the National Institutes of Health and the Department of Veterans Affairs. ``(e) Definition.--For the purposes of this section, the term `national voluntary health association' means a national non-profit organization with chapters or other affiliated organizations in States throughout the United States with experience serving the population of individuals with ALS and have demonstrated experience in ALS research, care, and patient services.''. SEC. 3. REPORT ON REGISTRIES. Not later than 18 months after the date of enactment of this Act, the Secretary of Health and Human Services may submit to the appropriate committees of Congress a report outlining-- (1) the registries currently under way; (2) future planned registries; (3) the criteria involved in determining what registries to conduct, defer, or suspend; and (4) the scope of those registries. The report may also include a description of the activities the Secretary undertakes to establish partnerships with research and patient advocacy communities to expand registries. The committee amendment in the nature of a substitute, as amended, was agreed to. The bill (S. 1382), as amended, was ordered to be engrossed for a third reading, was read the third time, and passed. Mr. REID. Madam President, let me say, as Senator Coburn leaves the floor, he knows there isn't a single bit of my mind or body that has any ill will toward him. He does this. I disagree with his doing this. He has a right to do this. My objection is not with him. It is his colleagues who procedurally support him in this. I want him to know our relationship is very good. I like him. The fact that I like him doesn't take away from my ability to disagree with him. Again, I would hope that maybe later today we can come here and pass some of these other bills we have tried to do today. The PRESIDING OFFICER. The Senator from Oklahoma. Mr. COBURN. Madam President, it is my understanding I have 14 minutes remaining in morning business. The PRESIDING OFFICER. The Senator is correct. Mr. COBURN. Madam President, I appreciate the attitude with which the majority leader comes. We have attempted to work out several bills that I think we will get worked out today. I would like to provide a more general discussion about what went on here because the American people need to know. All these bills could have come to the floor for debate and amendment. They haven't been blocked. What has happened is one Senator, myself, to the dismay of most of my colleagues on my side of the aisle who want these bills to pass, has said the American people ought to hear a debate. We ought to be able to amend the bills. We are talking about $10 billion in new spending, 37 new Government agencies, and we are to pass that by not having any debate and just saying yes. I will not do that. I understand that is frustrating to my colleagues on both sides of the aisle. As a matter of fact, I get much more consternation from Republicans than I do from Democrats for my desire for us to be frugal with taxpayer dollars and also to be transparent. The fact is, we ought to have debates. We ought to amend. If one watches C-SPAN at all, what they see is, the vast majority of time, we are not doing anything in here. So there is plenty of time for us to do it. I will make another significant point. We have in front of us a financial crisis that we are going to ask the American taxpayer to fund, some $700 billion in guarantees on loans, one way or the other, for loans that are not performing, whether that be mortgages or other loans, commercial real estate, home real estate. We are getting ready to ask the American people to do that. The contention I have had in this body since I have been here is completely opposite of what Senator Reid voiced yesterday and again this morning, that these don't cost anything. If they don't cost anything and we are not going to spend any money, then they are not ever going to have any impact, if we don't spend the money. The fact is, authorizations matter because we do intend to spend the money. Therefore, if we continue to authorize and authorize [[Page 20067]] and grow the Government bigger than what it is today--and one of reasons we are in the jam today is because the Federal Government is trying to do things totally outside the enumerated powers of the Constitution that were specifically given to us to limit the range and impact and reach of the Federal Government. That is why we are going to be asking for $700 billion of the next generation's money to make up for mistakes that Congresses have made as we have reached beyond what the Constitution says. The very idea to claim that these don't spend any money flies in the face of reality. I would like to submit to the record a release on military aid spending. It shows the duplicity associated with our words. The majority leader said none of this spends any money. We passed the Defense authorization bill. Lo and behold, what are the releases of all the Members of Congress that had marks and things that go home on parochial interests? Here is what they say. They will spend money. Major research and military infrastructure needs will receive an enormous boost. Nearly $200 million in Federal spending to ensure the State's bases have everything they need. Well, if authorizations do not spend any money, why are we claiming in press releases they do? We cannot have it both ways. The fact is, if we say they do not spend any money, and we do not intend to appropriate it, what we are doing is playing a hoax on the American people. We are going to have before us this week some very difficult challenges for the Congress. The medicine, the painful medicine this country is going to have to take to reestablish confidence in our financial markets is directly related to the behavior of not deauthorizing and not getting rid of wasteful programs. The fact is, the Government Accountability Office has specifically listed out, along with the inspectors general of each of the agencies, as well as the Congressional Budget Office and Congressional Research Service, over $300 billion of waste, fraud, or duplication. When was the last time we aggressively eliminated waste, we aggressively eliminated fraud, we aggressively eliminated duplication? The President has admitted that combining the debt with what we are borrowing from Social Security, this next year we are going to have a $600 billion deficit. Not only are we going to take $700 billion and put it into nonperforming loans, we are going to borrow another $600 billion from the next generation to operate the Government, when we know over $300 billion of that is waste. What are we doing? We are passing more authorizations with new spending, which will get spent, or we are being dishonest with those people who say we are supporting those programs. It is time for a change. Both campaigns on the Presidential side are talking about that. But the change that needs to happen is a change inside Congress, that we will start addressing the real problem. Imagine the fact that HHS put out that in 2007 31 percent of all Medicare payments were improperly made, with about 80 percent of those being overpayments. It does not sound like much until you see that is almost 80 billion of Medicare dollars that were improperly paid. Where is the bill on the floor now to fix that? Where is the bill on the floor to get us out of the energy jam we are in? Instead, we are authorizing new programs without eliminating others and continuing the very errors of our ways that got us into the jam we are now going to ask the American taxpayers to give us $700 billion to get us out of. It time for a timeout in Washington. It is time for us to reconsider how we do things, why we do things, and when we do things. Passing large numbers of new authorizations without eliminating the areas that are not working now does not fix anything. All it will do is make it more expensive to continue to fail. It also means we do not hold the bureaucracies accountable, which we are not. I ask the Presiding Officer the amount of time I have. The PRESIDING OFFICER. Six minutes 41 seconds. Mr. COBURN. I thank the Presiding Officer. I will finish in a moment. The question the American people ought to be asking of Congress right now, I believe, is this: You took an oath to uphold the Constitution. The Constitution has in it this very significant component that is called the Enumerated Powers Act. It is article II, section 8. It tells us exactly what we are to be about, what we are to do, and what we are not to do. The question you ought to measure us on is: Are we following the U.S. Constitution? Many of the bills Senator Reid just brought forward are well within the bounds of the Enumerated Powers, but many of them are not. Yet we think at a parochial level and a political level about our own reelections and we forget this document that has guided this country so well. My hope is the American people will start demanding that we follow this rule book, this guide book. If we do, not only will we eliminate that $300 billion of waste, fraud, and abuse, we will eliminate another $300 billion worth of programs that do not have any role coming out of the Federal Government, and we will put Government closer and more directly accountable to the very people who are being governed, and that is back at the local and State levels. I will say in finishing up, Senator Reid made several references to the Republican caucus. I will assure him that the vast majority of the members of my caucus do not support my position on authorizations. Their only support of me came in light of contrasting it next to an energy bill, which we still have not accomplished. Congress has still not done anything about the No. 1 national security issue facing us, which is our dependence on foreign sources of energy. That is what we ought to be about this week. We ought to pass a CR. We ought to do what we have to do to fix the financial crisis. And we ought to be back making sure that another year does not go by where we do not have a comprehensive plan that utilizes every bit of America's talents, every bit of America's resources to make us less dependent and more secure on the issue of energy. Madam President, I ask unanimous consent that this document be printed in the Record. There being no objection, the material was ordered to be printed in the Record, as follows: Reid Set To Deliver Nearly $200 Million to Nevada To Aid Military Washington, DC.--Major research efforts in Nevada and military infrastructure needs statewide could soon receive an enormous boost from Nevada Senator Harry Reid, who is delivering nearly $200 million in federal funding to help ensure the state's bases have everything they need. As part of the defense authorization bill passed Wednesday by the Senate, Nevada will see important benefits if President Bush drops his veto threat. Notable are the construction of a $33.9 million Army Reserve Center in Las Vegas, as well as nearly $64 million in improvements at Nellis Air Force Base. This includes construction of a hangar and aircraft maintenance unit, and infrastructure upgrades for the F-16 aggressor squadron at the base. There is also more than $32 million for improvements at Creech Air Force Base in Indian Springs, including funds for the construction of the Unmanned Aerial Systems Flight Simulator and Academics Facility. ``Safety abroad begins with strength at home, and I will always make sure Nevada's military installations are as strong as possible,'' Reid said. ``This money will improve both our ability to protect our country and the quality of life for the troops we appreciate so greatly. I will always deliver for our military and for our veterans when their military service ends, and I call upon the President to do the same by signing this bill.'' Mr. COBURN. With that, I yield the remainder of my time. The PRESIDING OFFICER. The Senator from Maryland. ____________________