[Congressional Record (Bound Edition), Volume 146 (2000), Part 17]
[Extensions of Remarks]
[Pages 25377-25378]
[From the U.S. Government Publishing Office, www.gpo.gov]



  ON THE CANCER AWARENESS WORKING GROUP'S HEARING ON CHILDHOOD CANCER

                                 ______
                                 

                           HON. DEBORAH PRYCE

                                of ohio

                    in the house of representatives

                        Friday, October 27, 2000

  Ms. PRYCE of Ohio. Mr. Speaker, I rise today to report on an 
important event that took place on Capitol Hill last month. September 
was Childhood Cancer Month and during this time the Cancer Awareness 
Working Group held a hearing on the subject. On September 15, 2000, Mr. 
Hobson, Ms. Capps and I gathered to listen to medical experts, 
afflicted children, parents, survivors and advocates from all over the 
country, share with the working group their stories, their knowledge, 
and their ideas on how best to fight this terrible disease.
  It was truly a privilege to have so many wonderful individuals here 
in Washington to speak on this most important of subjects. An estimated 
12,400 children and young people will be diagnosed with cancer this 
year and 2,300 children will die from the disease. It is the number one 
cause of death by disease in children under 15, and for the children 
and families who experience the tragedy of affliction there can be no 
greater harm. Leukemia, chemotherapy, lymphoma, neuroblastoma--these 
are terms a small child should not have to pronounce. Yet the incidence 
of cancer among children has been rising steadily for the past 20 years 
and the resources devoted to research and treatment of pediatric 
cancers

[[Page 25378]]

remain relatively small. For these reasons, the efforts provided by 
these individuals to increase the awareness of this devastating 
disease, are not only appreciated, but also truly needed.
  Mr. Speaker, with this in mind, I would like to present to you the 
names of the individuals who gathered for this special event to provide 
testimony on their experiences with all aspects of childhood cancer. 
Unfortunately, I am unable to include in these remarks the full text of 
each individual's testimony. Instead, I have provided summarizations 
and excerpts from them. I would encourage all Members to review the 
full transcript from this important hearing that is available on my 
website at www.house.gov/pryce. In addition, a text copy of the 
transcript can be found in the collection at the Library of Congress.

       Dr. Susan Weiner, Founder of the Children's Cause, Inc., 
     Parent, Silver Spring, Maryland. Dr. Weiner spoke about her 
     organization, the loss of her son to pediatric brain cancer, 
     scientific advances in the field, the need for mandatory 
     coverage of cancer trails, and the importance of childhood 
     research for cancer drugs.
       Dr. Michael LaQuaglia, M.D., Physician, Memorial Sloan 
     Kettering Cancer Center, New York, New York. Dr. LaQuaglia 
     spoke about the long battle ahead in the fight against 
     childhood cancer, the devastating course a family goes 
     through from diagnosis through treatment, the need for 
     increased funding for research and coverage for childhood 
     catastrophic illness.
       G. Denman Hammond, M.D., Professor of Pediatrics, 
     University of Southern California, Los Angeles, California. 
     Dr. Hammond spoke about the history of pediatric treatments, 
     the formation of the support groups such as the National 
     Childhood Cancer Foundation and Children's Oncology Group 
     (C.O.G.), and the need for increased awareness.
       Nai-Kong Cheung, M.D., Ph.D., Physician and Researcher, 
     Memorial Sloan Kettering Cancer Center, New York, New York. 
     Dr. Cheung spoke about his first hand experience treating 
     childhood cancer patients, the devastating effects the 
     disease has on families and the process they go through, the 
     cost barriers to treatments and the limited support available 
     to help, the need for a bill of rights for individuals with 
     serious illness, the need for increased funding for research 
     and orphan drugs, and the need for more accurate data 
     collection.
       Mark A. Mozer, M.D., Pediatrician and Parent, Blue Springs, 
     Missouri. Dr. Mozer spoke about his personal experience with 
     his son Jacob's neuroblastoma, the need for more targeted 
     funding for childhood cancer research, and the adversarial 
     relationship between insurance companies and victims of 
     pediatric cancer.
       Robert Barton, Parent, Tehana, Texas. Mr. Barton spoke 
     about his personal experience with his son Brady's 
     osteosarcoma, and the need for increased funding for 
     childhood cancer research.
       Joan Bondareff, Parent, Alexandria, Virginia. Ms. Bondareff 
     spoke about her personal experience with her daughter Lori's 
     neuroblastoma, the need for increased awareness and funding 
     for pediatric cancer, and she urged congressional support for 
     H. Con. Res. 115, H. Res. 576, H.R. 2621 and S. 1091.
       Beverly Circone, Founder and Director of Kids 'N Kamp, 
     Columbus Ohio. Ms. Circone spoke eloquently about her 
     experience running a summer camp for children with cancer and 
     the need for private and public fundraising to support 
     families.
       Janet Hall, Parent, Dayton, Ohio. Mrs. Hall spoke about her 
     personal experience with her son's cancer and the need for 
     increased research in this area. Mrs. Hall is the spouse of 
     Congressman Tony Hall.
       Craig Lustig, Survivor, Washington, D.C. Mr. Lustig spoke 
     of his personal experience as a pediatric brain tumor 
     survivor, and the need to reduce barriers to clinical trials 
     and for continued funding for research.
       Andrea Martini, Parent, Everett, Washington. Ms. Martini 
     spoke about her personal experience with her daughter 
     Alexandria's AML, the significant costs involved in 
     treatment, and the need for mandatory coverage of cancer 
     trials.
       Pat Tallungan, Parent and Administrator of an On-Line 
     Support Group, Bloomingdale, Illinois. Ms. Tallungan spoke 
     about her personal experience with her son Nick's 
     neuroblastoma, her involvement with various childhood cancer 
     foundations and organizations, and the need for expanded 
     availability of cancer trials, better pain management, and 
     increased funding for research.
       Beth Westbrook, Parent and Fundraiser for Childhood Cancer, 
     Children's Hospital, Pittsburgh, Pennsylvania. Ms. Westbrook 
     spoke about her personal experience with her
       Gina Peca, Parent, Balston Lake, New York. Ms. Peca spoke 
     about her personal experience with her daughter Katie's 
     neuroblastoma, the limited number of treatment options and 
     facilities for afflicted children, and the need for mandatory 
     coverage of cancer trials.
       Robyn Raphael, Parent and Founder of Keaton Raphael 
     Memorial Fund, California. Ms. Raphael spoke about her 
     personal experience with her son Keaton's neuroblastoma.
       Tom Dunbar, Parent, Louisville, Kentucky. Mr. Dunbar spoke 
     of his personal experience with his son's neuroblastoma, the 
     need for increased federal funding for research, and the many 
     difficulties surrounding clinical trials. He also addressed 
     the shut down of a promising clinical trial at St. Jude's 
     Children's Research Hospital that he felt was caused by 
     overzealous and irresponsible reporting on the part of the 
     Washington Post.
       Duane Parker, Uncle, Louisville, Kentucky. Mr. Parker spoke 
     about his personal experience with his nephew Evan's 
     neuroblastoma and the need for increased funding.
       Diane Moore, Parent and Founder of Houston's Hope Fund, 
     Fairfax, Virginia. Ms. Moore presented a slide show 
     containing pictures of children lost to pediatric cancer.
       Cathy O'Connell, Parent, East Hampton, Massachusetts. Ms. 
     O'Connell spoke of her personal experience with her daughter 
     Asley's neuroblastoma, the financial devastation that often 
     faces families with sick children, and the need for increased 
     funding for research.
       Judy Gelber, Parent, Miami Beach, Florida. Ms. Gelber spoke 
     of her personal experience with her son Zach's lymphoma, her 
     family's program for kids with cancer--Camp Fiesta, and the 
     need for increased government oversight of the FDA and 
     funding for research.
       Nina Petrarca, Parent, Registered Pediatric Nurse, and 
     Founder of Nonprofit Organization Samantha's Way, Exeter, 
     Rhode Island. Ms. Petrarca spoke about her personal 
     experience with her daughter Samantha's cancer known as mixed 
     scleroma, the need for increased access to information in 
     order to make informed decisions about treatment, the need 
     for support groups within treatment centers and increased 
     federal funding for research, and her organization Samantha's 
     Way.
       Meg Crossett, Parent, Centreville, Virgina. Ms. Crosett 
     spoke of her personal experience with her daughter Rachel's 
     neuroblastoma and the need for targeted funding for pediatric 
     cancer research.
       Jacob Shoval, Parent, Germantown, Maryland. Mr. Shovel 
     spoke about his personal experience with his son Benjamin's 
     neuroblastoma, the need for increased funding for research, 
     and the significant barriers to receiving even covered care 
     from insurance companies.
       Nick Schiaffo, Parent, Richmond, Virginia. Mr. Schiaffo 
     spoke of her personal experience with his son Danny's 
     medulloblastoma and the need for more research in this area.
       Rosalie Baumann, Parent, Merrick, New York. Ms. Baumann 
     spoke about her personal experience with her son Gregory's 
     brain cancer and the need for increased research and 
     awareness in this area.
       James F. Sexton, Parent and Founder of Neuroblastoma 
     Children's Cancer Society, Hoffman Estates, Illinois. Mr. 
     Sexton spoke of his personal experience with his son 
     Michael's neuroblastoma, the need for increased funding in 
     this area, his organization the Neuroblastoma Children's 
     Cancer Society, and the devastating financial impact the 
     disease has on families.
       Kelly Salvadore, Parent, Maryland. Ms. Salvadore spoke 
     about her personal experience with her son Mark's 
     neuroblastoma, the adversarial relationship between victims 
     and insurance companies, and the need for increased funding 
     for pediatric cancer research.
       Susan Roe, Parent, Henderson, Nevada. Ms. Roe spoke of her 
     personal experience with her son Christopher's leukemia, the 
     adversarial relationship between victims and insurance 
     companies, and the need for a Patient's Bill of Rights.
       Charmaine Coulter, Parent, Philadelphia, Pennsylvania. Ms. 
     Coulter spoke about her personal experience with her daughter 
     Alise's osteosarcoma and the need for increased awareness and 
     funding in this area.
       Lise Yasui, Parent, Philadelphia, Pennsylvania. Ms. Yasui 
     spoke about her personal experience with her son Lucas's 
     neuroblastoma and the need for increased funding and 
     awareness in this area.
       Bobby McQuinn, Survivor. Mr. McQuinn spoke on his personal 
     battle with leukemia and the foundation his family started to 
     support victims of pediatric cancer.
       Paul Steinberg. Mr. Steinberg spoke on the need for 
     increased funding for pediatric cancer and the role of the 
     federal government.
       Rebecca Howard, Parent. Ms. Howard offered written 
     testimony on her personal experience with her daughter 
     Elizabeth's lyposacrcoma, the adversarial relationship 
     between victims and insurance companies.
       Lisa Tignor, Parent. Ms. Tignor offered written testimony 
     on her personal experience with leukemia, the disease that 
     afflicted both her sons, Brian and Kevin. Her testimony also 
     addressed the need for increased awareness, data collection, 
     and funding for research as well as increased access to 
     cancer trials.





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