[Congressional Record (Bound Edition), Volume 147 (2001), Part 17]
[House]
[Pages 23826-23828]
[From the U.S. Government Publishing Office, www.gpo.gov]



       EXPRESSING SENSE OF CONGRESS REGARDING TUBEROUS SCLEROSIS

  Mr. BILIRAKIS. Mr. Speaker, I move to suspend the rules and agree to 
the concurrent resolution (H. Con. Res. 25) expressing the sense of the 
Congress regarding tuberous sclerosis, as amended.
  The Clerk read as follows:

                            H. Con. Res. 25

       Whereas at least two children born each day will be 
     affected with tuberous sclerosis;
       Whereas nearly one million people worldwide are known to 
     have tuberous sclerosis;
       Whereas tuberous sclerosis affects all races and ethnic 
     groups equally;
       Whereas tuberous sclerosis is caused by either an inherited 
     autosomal disorder or by a spontaneous genetic mutation;
       Whereas when tuberous sclerosis is genetically transmitted 
     as an autosomal dominant disorder, a child with a parent with 
     the gene will have a 50-percent chance of inheriting the 
     disease;
       Whereas two-thirds of the cases of tuberous sclerosis are 
     believed to be a result of spontaneous mutation, although the 
     cause of such mutations is a mystery;
       Whereas diagnosis takes an average of 90 days with 
     consultation of at least three specialists;
       Whereas tuberous sclerosis frequently goes undiagnosed 
     because of the obscurity of the disease and the mild form the 
     symptoms may take; and
       Whereas the Congress as an institution, and Members of 
     Congress as individuals, are in unique positions to help 
     raise public awareness about the need for increased funding 
     for research, detection, and treatment of tuberous sclerosis 
     and to support the fight against tuberous sclerosis: Now, 
     therefore, be it
       Resolved by the House of Representatives (the Senate 
     concurring), That it is the sense of the Congress that--
       (1) all Americans should take an active role in the fight 
     against tuberous sclerosis by all means available to them, 
     including early and complete clinical testing and 
     investigating family histories;
       (2) the role played by national and community organizations 
     and health care providers in promoting awareness of the 
     importance of early diagnosis, testing, and ongoing screening 
     should be recognized and applauded;
       (3) the Federal Government has a responsibility to--
       (A) endeavor to raise awareness about the importance of the 
     early detection of, and proper treatment for, tuberous 
     sclerosis;
       (B) increase funding for research so that the causes of, 
     and improved treatment for, tuberous sclerosis may be 
     discovered; and
       (C) continue to consider ways to improve access to, and the 
     quality of, health care services for detecting and treating 
     tuberous sclerosis; and
       (4) the Director of the National Institutes of Health 
     should take a leadership role in the fight against tuberous 
     sclerosis by acting with appropriate offices within the 
     National Institutes of Health to provide to the Congress a 
     five-year research plan for tuberous sclerosis.

  The SPEAKER pro tempore. Pursuant to the rule, the gentleman from 
Florida (Mr. Bilirakis) and the gentleman from Ohio (Mr. Brown) each 
will control 20 minutes.
  The Chair recognizes the gentleman from Florida (Mr. Bilirakis).


                             General Leave

  Mr. BILIRAKIS. Mr. Speaker, I ask unanimous consent that all Members 
may have 5 legislative days within which to revise and extend their 
remarks and include extraneous material on H. Con. Res. 25.
  The SPEAKER pro tempore. Is there objection to the request of the 
gentleman from Florida?
  There was no objection.
  Mr. BILIRAKIS. Mr. Speaker, I yield myself such time as I may 
consume.
  I rise today to support this concurrent resolution increasing 
awareness of tuberous sclerosis and supporting programs for greater 
research.
  Though few Americans have ever heard of tuberous sclerosis, it is a 
disease that affects 50,000 here at home and nearly 1 million people 
worldwide. It is a genetic disorder that causes seizures and tumor 
growth in vital organs such as the brain, heart, kidneys, lungs, and 
skin. Though these tumors are benign, they often compromise the proper 
functioning of essential organs. For example, many of those afflicted 
have some type of learning disability or behavioral problem caused by 
the combination of the brain tumors and seizures.
  Individuals with tuberous sclerosis and their families face 
significant financial, emotional and social hardships. More than 60 
percent of those living with the disease will never live independently. 
This means a dramatically reduced quality of life for both those 
afflicted and their families.
  We can make a difference by raising awareness about the importance of 
early detection and proper treatment for tuberous sclerosis. The 
resources of the Federal Government's health and resource institutes 
can help advance the understanding of the biological factors causing 
this disease. Working in partnership with other research initiatives, 
we can help reduce the long-term impact of this problem.
  H. Con. Res. 25 takes an important step in the fight against tuberous 
sclerosis, and I urge my colleagues to support it.
  Mr. Speaker, I reserve the balance of my time.
  Mr. BROWN of Ohio. Mr. Speaker, I yield myself as much time as I may 
consume.
  I would like to thank the gentlewoman from New York (Mrs. Kelly) for 
her dedication to the issue of tuberous sclerosis. H. Con. Res. 25 
expresses our support in the fight against tuberous sclerosis, a rare 
genetic disorder that affects the central nervous system.
  Tuberous sclerosis affects one in 6,000 babies in our country and 
does not discriminate by race or by gender. At least two babies born 
today will be touched in this country by this disorder. It can cause 
kidney problems, brain tumors, skin abnormalities, seizures, and 
various degrees of mental disability. Tuberous sclerosis is frequently 
unrecognized and frequently misdiagnosed.
  There is no cure for this disease, yet. The NINDS, one of the 
institutes of health, is studying this disorder, trying to find new 
treatments, trying to find new methods of prevention, and trying 
ultimately, of course, to find a cure.
  Congress must continue to improve access to quality health care 
services for detecting and treating tuberous sclerosis.
  This resolution encourages the director of NIH to take a leadership 
role in the fight to eradicate tuberous sclerosis.

                              {time}  1545

  As Members of Ohio are in unique positions to raise awareness about 
disorders that simply do not garner the attention that they deserve, 
the bill of the gentlewoman from New York (Mrs. Kelly) will help bring 
focus to the fight against tuberous sclerosis. I urge Congress to pass 
this resolution.
  Mr. Speaker, I reserve the balance of my time.
  Mr. BILIRAKIS. Mr. Speaker, I yield 5 minutes to the gentlewoman from 
New York (Mrs. Kelly), who we are all indebted to for bringing the 
issue of tuberous sclerosis to our attention.
  Mrs. KELLY. Mr. Speaker, I rise today in strong support of the 
concurrent resolution, H. Con. Res. 25, expressing the sense of 
Congress regarding tuberous sclerosis. I commend the gentleman from 
Louisiana (Mr. Tauzin), the distinguished chairman of the Committee on 
Commerce, and the chairman of the Subcommittee on

[[Page 23827]]

Health, the gentleman from Florida (Mr. Bilirakis), for acting so 
quickly to report this important legislation.
  H. Con. Res. 25 represents the opportunity Congress has to educate 
Americans about the little known genetic disease tuberous sclerosis. It 
is estimated that at least two children born each day will have 
tuberous sclerosis. There are approximately 1 million people worldwide 
who are affected. TS is a disorder that can be inherited or result from 
genetic mutation. The disease is characterized by seizures and tumors 
which form in vital organs such as brain, heart, skin, kidneys and 
lungs. Though not malignant, these tumors can cause debilitating and 
sometimes life-threatening problems.
  Diagnosis of TS is very difficult, and all too often it goes 
undetected or is misdiagnosed because its symptoms are similar to those 
of more common conditions like epilepsy or autism. It is often first 
recognized following a series of epileptic seizures or varying degrees 
of developmental delay. An average TS diagnosis takes 90 days and 
involves up to three specialists and numerous tests.
  Preliminary research has found specific genes associated with 
tuberous sclerosis, but to date there is no widely used genetic test, 
leaving diagnosis to be based on clinical findings. Increased awareness 
of TS among health care providers and the general population is the key 
to early diagnosis.
  As is the case with many diseases, early detection often determines 
TS patients' successes in managing the disease. With the variety of 
treatments currently available to ease symptoms and improve the quality 
of life for people with tuberous sclerosis, funding to promote 
awareness in the medical community as well as research to increase 
early diagnosis really are imperative.
  For instance, early intervention has the potential to reduce 
developmental delay experienced by young patients. Likewise, surgery to 
remove tumors can help preserve organ function. TS is a permanent 
medical condition, and those affected and their families must cope with 
the illness for their entire lives. In some cases, TS does not preclude 
those who have it from living a relatively normal life. However, in 
most cases, it is much more intrusive. In addition to the difficulty of 
diagnosis, there are other post-diagnostic issues with which families 
must contend, such as obtaining adequate health insurance and, later in 
life, arranging for independent living solutions.
  H. Con. Res. 25 highlights the severity of tuberous sclerosis and 
affirms the Federal Government's responsibility to facilitate research 
in this area. We must build on the foundation of knowledge of tuberous 
sclerosis that has already been built, largely through the organization 
and resources of friends and families of TS patients.
  This bill instructs the director of the National Institutes of Health 
to work with the appropriate offices within NIH to bring awareness to 
this disease and to devise a 5-year plan for outlining research 
initiatives for TS. Congress must act to foster increased research on 
tuberous sclerosis. We must use our excellent scientific and medical 
resources to better understand this very complicated disease.
  I urge my colleagues to support this worthwhile and necessary 
legislation.
  Mr. BILIRAKIS. Mr. Speaker, I yield such time as he may consume to 
the gentleman from Louisiana (Mr. Tauzin), the chairman of the full 
committee.
  Mr. TAUZIN. Mr. Speaker, I thank the chairman for yielding me this 
time and commend him for moving so expeditiously on this resolution, 
and also I want to commend the gentlewoman from New York (Mrs. Kelly) 
for her incredible work in this area and other areas. I understand she 
is also very similar, in moving a similar resolution on Crohn's 
Disease.
  Yesterday, in the Nation's capital, we had an amazing function of 
families across America gathering for the Cancer Research Family 
Awareness Luncheon. Sam Donaldson was here, himself a cancer survivor. 
The whole idea behind the luncheon was to honor those who have worked 
tirelessly to make people aware of what early detection can do to cure 
it.
  My mother is a three-time cancer survivor. In each case, because she 
caught it early, she was cured with operation rather than chemo or 
radiation, sort of a miracle. It started in 1960 with breast cancer; in 
1980, then lung cancer; and, just recently, with uterine cancer.
  The fact that we make people aware of these diseases so that their 
doctors and moms and dads can spot them when we see them and treat them 
sooner makes immeasurable difference not only in the care and treatment 
of these diseases, but very often in life itself. Many cancer survivors 
were there to tell their stories yesterday about how, because someone 
took the trouble to talk about these diseases on television, on the 
radio, on the floor of the House today, somebody paid attention, 
somebody caught it early, and somebody was better off for it.
  Yesterday, for example, a young woman who is an anchor of a San 
Antonio, Texas television station was honored for the work she did. She 
discovered she had breast cancer. Instead of hiding the fact, she went 
on the air with it and actually did a documentary of how she went 
through treatment, and how they operated on the cancer and how she went 
through the incredible ordeal of the chemotherapy, losing her hair. She 
even did an anchor one night, bald, just to show that you can get 
through these things and you can live and you can survive if you are 
willing to be brave enough to face these diseases head-on and treat 
them early and deal with them.
  Here, in this case, the gentlewoman from New York (Mrs. Kelly) has 
brought to us a concern of so many families, 50,000 families in America 
which have someone in their family with tuberous sclerosis. And here is 
another genetic disease that, if we pay enough attention to it, put a 
little research money on it, we will find a way to cure it and save an 
uncounted number of lives not only in America but around the world, and 
certainly make life much more comfortable and bearable for those who 
suffer with that disease today.
  Again, I want to congratulate my colleague from New York for her fine 
work, and the chairman of the Subcommittee on Health (Mr. Bilirakis), 
and the ranking member, the gentleman from Ohio (Mr. Brown), for their 
excellent cooperation in moving this and similar resolutions forward.
  Mr. BEREUTER. Mr. Speaker, as a cosponsor of the concurrent 
resolution, this Member wishes to add his strong support for H. Con. 
Res. 25, which expresses the sense of Congress that the Federal 
Government has a responsibility to raise public awareness of tuberous 
sclerosis and educate all Americans about the importance of the early 
detection of, and proper treatment for the disease.
  This Member would like to commend the distinguished gentleman from 
Louisiana [Mr. Tauzin], the Chairman of the House Committee on Energy 
and Commerce, and the distinguished gentleman from Michigan [Mr. 
Dingell], the ranking member of the House Committee on Energy and 
Commerce, for bringing this important resolution to the House Floor 
today. This Member would also like to commend the gentlelady from New 
York [Mrs. Kelly] for sponsoring H. Con. Res. 25 and for her personal 
interest in tuberous sclerosis.
  Tuberous sclerosis complex (TSC) is a genetic disorder characterized 
by seizures and tumor growth in vital organs such as the brain, heart, 
kidneys, lungs and skin. Individuals with tuberous sclerosis commonly 
begin having seizures during the first year of life, and conventional 
epilepsy therapies often do not control the seizure activity in 
infants, children or adults. Seizures, as well as brain tumors, 
contribute to cognitive impairment. As a result, a majority of those 
afflicted with tuberous sclerosis experience some form of learning 
disability or behavioral problem, such as attention deficit 
hyperactivity disorder, autism or mental retardation.
  This Member recently received a letter from his constituents, Mr. and 
Mrs. Lorenz Niemeyer. The Niemeyer's are the proud grandparents of a 
23-month old granddaughter, who was diagnosed with tuberous sclerosis 
at four weeks of age, having tumors on the brain. The Neimeyer's fear 
that their granddaughter is severely disabled, both mentally and 
developmentally.
  The toll on the family of a person with tuberous sclerosis is 
enormous. Care for a tuberous sclerosis patient often requires on-going

[[Page 23828]]

treatment that involves multiple medical specialists, speech, 
occupational and other therapists, as well as those skilled in the 
proper care and educational and emotional development of a medically 
and mentally disabled individual.
  House Concurrent Resolution 25 expresses the sense of the Congress 
that the Federal Government has a responsibility to raise public 
awareness of tuberous sclerosis and educate all Americans about the 
importance of the early detection of, and proper treatment for, 
tuberous sclerosis. In addition, the resolution urges an increase in 
funding for research on tuberous sclerosis. Finally, H. Con. Res. 25 
urges the National Institutes of Health to take a leadership role and 
to provide a five-year research plan in the fight against tuberous 
sclerosis.
  Mr. Speaker, in closing, this Member urges his colleagues to support 
H. Con. Res. 25.
  Ms. JACKSON-LEE of Texas. Mr. Speaker, I rise today in support of H. 
Con. Res. 25, which expresses the sense of Congress regarding tuberous 
sclerosis. This measure urges increased federal aid for research and 
calls on the Director of the National Institutes of Health to help 
develop a five-year research plan for tuberous sclerosis. H. Con. Res. 
25 also declares that all Americans should take an active role in the 
fight against this genetic disorder.
  At least two children born each day will be affected with tuberous 
sclerosis (TS). Nearly one million people worldwide are known to have 
TS. TS does not discriminate against any race or ethnic group.
  According to a report released by the Tuberous Sclerosis Association, 
preschool children with TS develop intellectual and behavioral 
problems. The intellectual development varies greatly. Approximately 
40% will not have global (affecting all areas of intelligence) 
intellectual impairments. The remaining may have mile, moderate, or 
severe mental retardation.
  It appears that children under the age of five years with moderate to 
severe mental retardation will remain mentally retarded to this degree 
into adulthood.
  Problems with behavior are some of the most common difficulties 
experienced by children with TS. Poor expressive language, poor 
development of social skills, motor impairments, and hyperactivity or 
inattention are a few examples.
  As this bill prescribes, early intervention is most effective. It has 
been found that during the first five years of life, developmentally 
disabled children tend to fall farther and farther behind children 
their own age who do not have developmental difficulties. These 
declines in the rate of intellectual development of disabled children 
and reduce with early intervention.
  Mr. Speaker, let us work together to raise awareness of tuberous 
sclerosis and help children with this disorder to live a normal life. I 
urge my colleagues to support H. Con. Res. 25.
  Mr. BROWN of Ohio. Mr. Speaker, I yield back the balance of my time.
  Mr. BILIRAKIS. Mr. Speaker, I have no further requests for time, and 
I yield back the balance of my time.
  The SPEAKER pro tempore (Mr. Petri). The question is on the motion 
offered by the gentleman from Florida (Mr. Bilirakis) that the House 
suspend the rules and agree to the concurrent resolution, House 
Concurrent Resolution 25, as amended.
  The question was taken; and (two-thirds having voted in favor 
thereof) the rules were suspended and the concurrent resolution was 
agreed to.
  A motion to reconsider was laid on the table.

                          ____________________