H8768 CONGRESSIONAL RECORD — HOUSE December 4, 2001 Mr. BILIRAKIS. Mr. Speaker, I yield life much more comfortable and bear- Mr. Speaker, in closing, this Member urges such time as he may consume to the able for those who suffer with that dis- his colleagues to support H. Con. Res. 25. gentleman from Louisiana (Mr. TAU- ease today. Ms. JACKSON-LEE of Texas. Mr. Speaker, ZIN), the chairman of the full com- Again, I want to congratulate my I rise today in support of H. Con. Res. 25, mittee. colleague from New York for her fine which expresses the sense of Congress re- Mr. TAUZIN. Mr. Speaker, I thank work, and the chairman of the Sub- garding tuberous sclerosis. This measure the chairman for yielding me this time committee on Health (Mr. BILIRAKIS), urges increased federal aid for research and and commend him for moving so expe- and the ranking member, the gen- calls on the Director of the National Institutes ditiously on this resolution, and also I tleman from Ohio (Mr. BROWN), for of Health to help develop a five-year research want to commend the gentlewoman their excellent cooperation in moving plan for tuberous sclerosis. H. Con. Res. 25 from New York (Mrs. KELLY) for her in- this and similar resolutions forward. also declares that all Americans should take credible work in this area and other Mr. BEREUTER. Mr. Speaker, as a cospon- an active role in the fight against this genetic areas. I understand she is also very sor of the concurrent resolution, this Member disorder. similar, in moving a similar resolution wishes to add his strong support for H. Con. At least two children born each day will be on Crohn’s Disease. Res. 25, which expresses the sense of Con- affected with tuberous sclerosis (TS). Nearly Yesterday, in the Nation’s capital, gress that the Federal Government has a re- one million people worldwide are known to we had an amazing function of families sponsibility to raise public awareness of tuber- have TS. TS does not discriminate against across America gathering for the Can- ous sclerosis and educate all Americans about any race or ethnic group. cer Research Family Awareness Lunch- the importance of the early detection of, and According to a report released by the Tuber- eon. Sam Donaldson was here, himself proper treatment for the disease. ous Sclerosis Association, preschool children a cancer survivor. The whole idea be- This Member would like to commend the with TS develop intellectual and behavioral hind the luncheon was to honor those distinguished gentleman from Louisiana [Mr. problems. The intellectual development varies who have worked tirelessly to make TAUZIN], the Chairman of the House Com- greatly. Approximately 40% will not have glob- people aware of what early detection mittee on Energy and Commerce, and the dis- al (affecting all areas of intelligence) intellec- can do to cure it. tinguished gentleman from Michigan [Mr. DIN- tual impairments. The remaining may have My mother is a three-time cancer GELL], the ranking member of the House Com- mile, moderate, or severe mental retardation. survivor. In each case, because she mittee on Energy and Commerce, for bringing It appears that children under the age of five caught it early, she was cured with op- this important resolution to the House Floor years with moderate to severe mental retarda- eration rather than chemo or radi- today. This Member would also like to com- tion will remain mentally retarded to this de- ation, sort of a miracle. It started in mend the gentlelady from New York [Mrs. gree into adulthood. 1960 with breast cancer; in 1980, then KELLY] for sponsoring H. Con. Res. 25 and for Problems with behavior are some of the lung cancer; and, just recently, with her personal interest in tuberous sclerosis. most common difficulties experienced by chil- uterine cancer. Tuberous sclerosis complex (TSC) is a ge- dren with TS. Poor expressive language, poor The fact that we make people aware netic disorder characterized by seizures and development of social skills, motor impair- of these diseases so that their doctors tumor growth in vital organs such as the brain, ments, and hyperactivity or inattention are a and moms and dads can spot them heart, kidneys, lungs and skin. Individuals with few examples. when we see them and treat them soon- tuberous sclerosis commonly begin having sei- As this bill prescribes, early intervention is er makes immeasurable difference not zures during the first year of life, and conven- most effective. It has been found that during only in the care and treatment of these tional epilepsy therapies often do not control the first five years of life, developmentally dis- diseases, but very often in life itself. the seizure activity in infants, children or abled children tend to fall farther and farther Many cancer survivors were there to adults. Seizures, as well as brain tumors, con- behind children their own age who do not tell their stories yesterday about how, tribute to cognitive impairment. As a result, a have developmental difficulties. These de- because someone took the trouble to majority of those afflicted with tuberous scle- clines in the rate of intellectual development of talk about these diseases on television, rosis experience some form of learning dis- disabled children and reduce with early inter- on the radio, on the floor of the House ability or behavioral problem, such as attention vention. today, somebody paid attention, some- deficit hyperactivity disorder, autism or mental Mr. Speaker, let us work together to raise body caught it early, and somebody retardation. awareness of tuberous sclerosis and help chil- was better off for it. This Member recently received a letter from dren with this disorder to live a normal life. I Yesterday, for example, a young his constituents, Mr. and Mrs. Lorenz Nie- urge my colleagues to support H. Con. Res. woman who is an anchor of a San Anto- meyer. The Niemeyer’s are the proud grand- 25. nio, Texas television station was hon- parents of a 23-month old granddaughter, who Mr. BROWN of Ohio. Mr. Speaker, I ored for the work she did. She discov- was diagnosed with tuberous sclerosis at four yield back the balance of my time. ered she had breast cancer. Instead of weeks of age, having tumors on the brain. The Mr. BILIRAKIS. Mr. Speaker, I have hiding the fact, she went on the air Neimeyer’s fear that their granddaughter is se- no further requests for time, and I with it and actually did a documentary verely disabled, both mentally and develop- yield back the balance of my time. of how she went through treatment, mentally. The SPEAKER pro tempore (Mr. and how they operated on the cancer The toll on the family of a person with tuber- PETRI). The question is on the motion and how she went through the incred- ous sclerosis is enormous. Care for a tuber- offered by the gentleman from Florida ible ordeal of the chemotherapy, losing ous sclerosis patient often requires on-going (Mr. BILIRAKIS) that the House suspend her hair. She even did an anchor one treatment that involves multiple medical spe- the rules and agree to the concurrent night, bald, just to show that you can cialists, speech, occupational and other thera- resolution, House Concurrent Resolu- get through these things and you can pists, as well as those skilled in the proper tion 25, as amended. live and you can survive if you are will- care and educational and emotional develop- The question was taken; and (two- ing to be brave enough to face these ment of a medically and mentally disabled in- thirds having voted in favor thereof) diseases head-on and treat them early dividual. the rules were suspended and the con- and deal with them. House Concurrent Resolution 25 expresses current resolution was agreed to. Here, in this case, the gentlewoman the sense of the Congress that the Federal A motion to reconsider was laid on from New York (Mrs. KELLY) has Government has a responsibility to raise pub- the table. brought to us a concern of so many lic awareness of tuberous sclerosis and edu- f families, 50,000 families in America cate all Americans about the importance of the which have someone in their family early detection of, and proper treatment for, NATIONAL HANSEN’S DISEASE with tuberous sclerosis. And here is an- tuberous sclerosis. In addition, the resolution PROGRAMS CENTER other genetic disease that, if we pay urges an increase in funding for research on Mr. BILIRAKIS. Mr. Speaker, I move enough attention to it, put a little re- tuberous sclerosis. Finally, H. Con. Res. 25 to suspend the rules and pass the bill search money on it, we will find a way urges the National Institutes of Health to take (H.R. 2441) to amend the Public Health to cure it and save an uncounted num- a leadership role and to provide a five-year re- Service Act to redesignate a facility as ber of lives not only in America but search plan in the fight against tuberous scle- the National Hansen’s Disease Pro- around the world, and certainly make rosis. grams Center, and for other purposes. December 4, 2001 CONGRESSIONAL RECORD — HOUSE H8769 The Clerk read as follows: 6,500 cases of this disease in the United Mr. BAKER. Mr. Speaker, I thank H.R. 2441 States. the gentleman for yielding me this Be it enacted by the Senate and House of Rep- In the 105th Congress, the National time and wish to express my apprecia- resentatives of the United States of America in Hansen’s Disease Programs, located in tion to both gentlemen for their cour- Congress assembled, the Gillis Long Disease Center in tesies in facilitating such prompt con- SECTION 1. DESIGNATION OF NATIONAL HAN- Carville, Louisiana was relocated to sideration of this important matter. SEN’S DISEASE PROGRAMS CENTER. Baton Rouge. Although the programs (a) REFERENCES IN PUBLIC HEALTH SERVICE moved from Carville to Baton Rouge, For those not familiar with the fine ACT.—Section 320(a)(1) of the Public Health they still bear the name Gillis Long institution in Louisiana, in Carville, Service Act (42 U.S.C. 247e(a)(1)) is amended known as the Gillis W. Long Hansen’s by striking ‘‘Gillis W. Long Hansen’s Disease Hansen’s Disease Center. Likewise, the Center’’ and inserting ‘‘National Hansen’s Louisiana National Guard in Carville is Disease Center, it is in fact a very his- Disease Programs Center’’. named the Gillis Long Center. toric facility which has provided im- (b) PUBLIC LAW 105–78.—References in sec- As a result of these two facilities measurable service to many people tion 211 of Public Law 105–78, and in deeds, sharing a name, the National Hansen’s throughout its longstanding history. agreements, or other documents under such Disease Program has suffered from un- section, to the Gillis W. Long Hansen’s Dis- necessary postal delays. This bill clears It is important that the Congress fa- ease Center shall be deemed to be references up confusion and reinforces the unique vorably act on this important name to the National Hansen’s Disease Programs function of the Baton Rouge facility by change today, for a very simple but im- Center. renaming it the National Hansen’s Dis- portant administrative reason. The Na- (c) OTHER REFERENCES.—Any reference in a tional Hansen’s Disease Programs have law, map, regulation, document, paper, or ease Programs Center. other record of the United States to the H.R. 2441 is straightforward legisla- been relocated from the Carville facil- Gillis W. Long Hansen’s Disease Center shall tion. It is located in the State of the ity to a new institution at the Summit be deemed to be a reference to the National chairman of the committee, the gen- Hospital within Baton Rouge. However, Hansen’s Disease Programs Center. tleman from Louisiana (Mr. TAUZIN), under the current regulatory provi- The SPEAKER pro tempore. Pursu- and I urge my colleagues to vote in sions, that secondary site must also be ant to the rule, the gentleman from favor of it. designated as the Gillis W. Long Cen- Florida (Mr. BILIRAKIS) and the gen- Mr. Speaker, I yield back the balance ter, therein creating problems for the tleman from Ohio (Mr. BROWN) each of my time. Mr. BILIRAKIS. Mr. Speaker, I yield patients of the new Hansen’s Disease will control 20 minutes. Programs in Baton Rouge. The Chair recognizes the gentleman such time as he may consume to the chairman of the full committee, the Even simple matters such as delivery from Florida (Mr. BILIRAKIS). gentleman from Louisiana (Mr. TAU- of mail now is necessitated to go GENERAL LEAVE ZIN). through the Carville Academy site, as Mr. BILIRAKIS. Mr. Speaker, I ask Mr. TAUZIN. Mr. Speaker, again my opposed to going directly to the Na- unanimous consent that all Members thanks to the chairman for yielding me may have 5 legislative days within tional Hansen’s Disease Center Pro- this time. grams. which to revise and extend their re- I rise in strong support of H.R. 2441, marks and to include extraneous mate- sponsored by my friend and colleague, rial on H.R. 2441. the gentleman from the great State of b 1600 The SPEAKER pro tempore. Is there Louisiana (Mr. BAKER). This name change facilitates that. objection to the request of the gen- The National Hansen’s Disease Pro- However, it in no way diminishes the tleman from Florida? grams has a long history of excellence, importance of the Gillis W. Long Cen- There was no objection. beginning with the humane treatment ter, where there has been an extraor- Mr. BILIRAKIS. Mr. Speaker, I yield rather than detention of those with dinary change over the past several myself such time as I may consume. leprosy in the late 1800s, the develop- Mr. Speaker, I rise in support of H.R. ment of the treatment for leprosy in years in the scope and direction of that 2441, changing the name of the Gillis the 1940s, and the current extension of valuable property. W. Long Hansen’s Disease Center hous- research to tuberculosis and diabetes. For well over 100 years, it was the ing the National Hansen’s Disease Pro- It has been an important part of Lou- target for treatment and research for gram to The National Hansen’s Disease isiana’s great history and this Nation’s Hansen’s disease. But in an act passed Programs Center. great history. Countless lives were by this Congress a few years ago, own- This change is necessary to avoid fur- changed in what many called the ‘‘Mir- ership of the facility was transferred to ther confusion in mail delivery be- acle of Carville.’’ the State of Louisiana and a youth at- tween the former location of the NHDP In the 105th Congress, we passed a risk education program has been cre- and its current location. Mail is often bill transferring ownership of the Gillis ated there. In this brief time since the misdirected, delaying important re- W. Long Hansen’s Disease Center in program’s initiation, the Youth Chal- search and legal documents. Name con- Carville, Louisiana from the Depart- lenge Program has seen 3,582 students fusion has also delayed critical patient ment of Health and Human Services to graduate from this new programmatic medical information. the State of Louisiana and moving it activity. What is remarkable is the NHDP continues to treat some 6,000 to Baton Rouge. The NHDP has contin- likelihood of these individuals com- people in the United States with Han- ued its fine work in Baton Rouge in- pleting their high school education was sen’s disease. Receiving patient med- stead of Carville, but the Carville facil- seriously in question. ical records is critical to that treat- ity has retained the name the Gillis W. ment. I urge my colleagues to support Long Hansen’s Disease Center. As re- After exposure to this fine program, this bill. quired by law, the new facility in 3,500 students have successfully com- Mr. Speaker, I reserve the balance of Baton Rouge is also called the Gillis W. pleted the educational curricula. Twen- my time. Long Hansen’s Disease Center. ty-four percent of our graduates have Mr. BROWN of Ohio. Mr. Speaker, I You can imagine the confusion. The gone on to engage in military service, yield myself such time as I may con- bill simply straightens out the confu- while another 50 percent have been em- sume. sion, to make sure the mail goes to the ployed or are in some job training pro- The National Hansen’s Disease Pro- proper party, and changes the name of gram, while the remaining 20 percent grams in Baton Rouge, Louisiana is the the NHDP to the National Hansen’s have gone on to higher education pur- only institution in the U.S. exclusively Programs Center to eliminate that suits. Some 13 percent have gone on to devoted to the complex infectious dis- confusion. It has the support, by the college. ease known as Hansen’s disease. Han- way, of our good friend, former Con- sen’s disease can cause nerve damage, gresswoman Long, who is Gillis’ widow, It is a remarkable program which resulting in the loss of muscle control and a dear friend of ours, and I urge the carries on in the random tradition of and the crippling of the hands and feet. adoption of this resolution. Congressman Gillis Long, a tireless Fortunately, considerable progress Mr. BILIRAKIS. Mr. Speaker, I yield servant of the American public, and his has been made over the last 40 years to 5 minutes to the gentleman from Lou- spouse, a former Member as well, treat successfully the majority of Han- isiana (Mr. BAKER), who is responsible Cathy Long, who is well aware of this sen’s disease cases. There are roughly for this legislation. name change. H8770 CONGRESSIONAL RECORD — HOUSE December 4, 2001 This programmatic activity is in the Alzheimer’s Association: she was a hands-on because we are all better off as a result highest of American principles. We activist on the association’s board of direc- of her powerful words. give nothing away except a chance; and tors, a masterful fund-raiser, a forceful advo- Her desire to contribute to our Na- young people from across our great cate, and a selfless and constant traveler to tion started at a young age when in anywhere and everywhere Alzheimer’s advo- State who are unlikely to be successful cates needed help; 1952 she knocked on doors for Dwight in any other endeavor, come here to Whereas at every stop she made and every Eisenhower. That early enthusiasm find renewed hope and opportunity event she attended in her efforts to eradicate stretched into her adult life. She pro- through discipline, education, and job Alzheimer’s disease through research, moted American businesses abroad in training. It, in fact, is carrying on the Maureen Reagan emphasized that research- the early 1980s, represented the United mission of the Sisters of Charity who ers are in a ‘‘race against time before Alz- States at the U.N. Decade for Women served countless numbers of hopeless heimer’s reaches epidemic levels’’ with the Conference in 1985, and chaired the Re- social outcasts for many years at the aging of the Baby Boomers; publican National Committee as well Whereas Maureen Reagan stated before the Hansen’s Disease Center. They too Congress in 2000 that ‘‘14 million Baby as the Republican Women’s Political have signed on to the program at Boomers are living with a death sentence of Action League. Carville Academy, seeing the hope and Alzheimer’s today’’; More than all of this impressive and vision that this opportunity creates for Whereas despite her declining health, important work, however, what stands the innumerable graduates of this fine Maureen Reagan never decreased her efforts out most as an inspiration to millions program. in her battle to eliminate Alzheimer’s dis- of Americans is her tireless dedication To both chairmen, I ask that the ease; to addressing the plague of Alzheimer’s House do concur in this recommenda- Whereas during the last six months of her disease. The chairman of the Alz- life, from her hospital bed and home, heimer’s Association board of directors tion. Maureen Reagan urged the Congress to in- Mr. BILIRAKIS. Mr. Speaker, I yield crease funding for Alzheimer’s disease re- called her the Joan of Arc of Alz- back the balance of my time. search at the National Institutes of Health; heimer’s. Anyone whose life has been The SPEAKER pro tempore (Mr. Whereas Maureen Reagan said, ‘‘The best touched or will be touched by the dis- CULBERSON). The question is on the mo- scientific minds have been brought into the ease owes her a debt of gratitude. Even tion offered by the gentleman from race against Alzheimer’s, a solid infrastruc- at the end of her life she disregarded Florida (Mr. BILIRAKIS) that the House ture is in place, and the path for further in- her own failing health in order to edu- suspend the rules and pass the bill, vestigations is clear. What’s missing is the cate people about Alzheimer’s and H.R. 2441. money, especially the Federal investment, to speak in favor of increased funding for keep up the pace.’’; and The question was taken; and (two- Whereas Maureen Reagan’s remarkable ad- research. As Ms. Reagan said, ‘‘We are thirds having voted in favor thereof) vocacy for the millions affected and afflicted in a race against time before Alz- the rules were suspended and the bill by Alzheimer’s disease will forever serve as heimer’s reaches epidemic levels.’’ was passed. an inspiration to continue and ultimately Today, 4 million people are living A motion to reconsider was laid on win the battle against the illness: Now, with Alzheimer’s; and this number will the table. therefore, be it grow as the baby boomer population Resolved by the Senate and House of Rep- f ages. Research is essential to a cure for resentatives of the United States of America in Alzheimer’s, and funding is essential to HONORING MAUREEN REAGAN ON Congress assembled, That the Congress, on the research. The experts are gaining THE OCCASION OF HER DEATH occasion of the tragic and untimely death of ground, and the course for future AND EXPRESSING CONDOLENCES Maureen Reagan— science is clear. Before this disease TO HER FAMILY (1) recognizes Maureen Reagan as one of the Nation’s most beloved and forceful cham- puts an incredible strain on our Na- Mr. BILIRAKIS. Mr. Speaker, I move pions for action to cure Alzheimer’s disease tion’s public health system, we must to suspend the rules and pass the joint and treat those suffering from the illness; take the initiative, Maureen Reagan’s resolution (H.J. Res. 60) honoring and initiative, and confront this scourge Maureen Reagan on the occasion of her (2) expresses deep and heartfelt condo- with a commitment to finding a rem- lences to the family of Maureen Reagan, in- death and expressing condolences to edy. her family, including her husband Den- cluding her husband Dennis Revell and her daughter Rita Revell. Mr. Speaker, the Secret Service nis Revell and her daughter Rita agents who guarded Maureen Reagan in The SPEAKER pro tempore. Pursu- Revell, as amended. life and who carried her casket at her ant to the rule, the gentleman from The Clerk read as follows: funeral had given her the code name Florida (Mr. BILIRAKIS) and the gen- H.J. RES. 60 ‘‘Radiant.’’ I believe there is not a tleman from Ohio (Mr. BROWN) each Whereas the Congress is greatly saddened more fitting description of her life, her will control 20 minutes. by the tragic death of Maureen Reagan on work and her memory. Mr. Speaker, I The Chair recognizes the gentleman August 8, 2001; hope all of my colleagues will join me from Florida (Mr. BILIRAKIS). Whereas Maureen Reagan’s love of life and in supporting H.J. Res. 60 in honoring countless contributions to family and the GENERAL LEAVE Maureen Reagan, her work and her Nation serve as an inspiration to millions; Mr. BILIRAKIS. Mr. Speaker, I ask courageous spirit. Whereas Maureen Reagan was a remark- unanimous consent that all Members able advocate for a number of causes and had Mr. Speaker, I reserve the balance of many passions, the greatest being her dedi- may have 5 legislative days within my time. cation to addressing the scourge of Alz- which to revise and extend their re- Mr. BROWN of Ohio. Mr. Speaker, I heimer’s disease; marks and include extraneous material yield myself such time as I may con- Whereas in 1994 when former President on the joint resolution under consider- sume. Ronald Reagan announced that he had been ation. Mr. Speaker, I thank the gentleman diagnosed with Alzheimer’s disease, Maureen The SPEAKER pro tempore. Is there from Massachusetts (Mr. MARKEY), for Reagan joined her father and Nancy Reagan objection to the request of the gen- his work on this resolution, H.J. Res. in the fight against Alzheimer’s disease and tleman from Florida? became a national spokesperson for the Alz- 60, recognizing Maureen Reagan as one heimer’s Association; There was no objection. of the country’s most effective advo- Whereas Maureen Reagan served as a tire- Mr. BILIRAKIS. Mr. Speaker, I yield cates on behalf of Alzheimer’s disease less advocate to raise public awareness about myself such time as I may consume. and expresses the House condolences to Alzheimer’s disease, support care givers, and Mr. Speaker, today I rise in support her family. substantially increase the Nation’s commit- of H.J. Res. 60 honoring Maureen Maureen Reagan is the daughter of ment to research on Alzheimer’s disease; Reagan. I would like to thank the gen- former President Ronald Reagan and Whereas Maureen Reagan helped inspire tleman from Massachusetts (Mr. MAR- his first wife, actress Jane Wyman. She the Congress to increase Federal research KEY) for sponsoring this resolution. died in August of this year after a cou- funding for Alzheimer’s disease by amounts proportionate to increases in research fund- Maureen Reagan was once described by rageous 5-year battle with malignant ing for other major diseases; one of her critics as one who was ‘‘not melanoma. She was 60 at the time. Whereas Maureen Reagan went far beyond schooled in the ways of holding her Since her father’s diagnosis of Alz- merely lending her name to the work of the tongue.’’ Thank goodness she was not heimer’s in 1994, Maureen Reagan was