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Federal Document Clearing House
Congressional Testimony
March 8, 2000, Wednesday
SECTION: CAPITOL HILL HEARING TESTIMONY
LENGTH: 3200 words
HEADLINE:
TESTIMONY March 08, 2000 VICENT HEREFORD HOUSE APPROPRIATIONS
LABOR, HEALTH AND HUMAN SERVICES, AND EDUCATION LABOR HHS APPROPS
BODY:
Statement of Vincent Hereford Hampton,
Virginia For The Leukemia & Lymphoma Society Before the House Appropriations
Subcommittee on Labor, Health and Human Services, Education and Related Agencies
March 8, 2000 Chairman Porter and Members of the Subcommittee, I am Vincent
Hereford of Hampton, Virginia. I was diagnosed with chronic myelogenous
leukemia, or CML, in 1991, and have been participating in a clinical trial at
M.D. Anderson Cancer Center in Houston, Texas. The medication I am receiving
(CGP 5714813) is similar to the publicized STI-571 in that it targets leukemia
cells only and leaves healthy cells intact. Participating in this treatment
protocol has been instrumental in maintaining a normal life for my family since
I have been diagnosed with this disease. As a husband, the father of two young
children, and a CML survivor, it has been a struggle to maintain work and family
life and organize treatment for myself. I am currently employed as a
Radiological Control Instructor at Newport News Shipbuilding and Dry Dock
Company in Newport News, Virginia. In addition, I serve in the Army Reserves as
Reenlistment NCO. I have been very fortunate to have employers who have
accommodated my needs; however, not all cancer survivors have this luxury. As a
participant in a clinical trial, I have been denied medical coverage through my
private insurance company on a regular basis. In order to obtain just basic
medical care, which insures my survival, I have had to advocate for myself on
almost a daily basis. These expenses include room and board, nursing services,
administration costs and travel to the treatment facilities. As many of these
expenses are not covered, patients such as myself have had to incur debt to
maintain daily living while receiving treatment. So, in addition to worrying
about survival and taking care of immediate needs, patients must also consider
future financial implications. Finances should not be a prime concern, getting
well should. The Leukemia & Lymphoma Society I am very pleased to represent
The Leukemia & Lymphoma Society before the Subcommittee. I have represented
the Society on a local level as a public speaker, a peer volunteer, an honored
patient, and an advocate. I have also been a beneficiary of financial assistance
through the Society, which pays for costs insurance will not cover. On behalf of
The Leukemia & Lymphoma Society, I would like to offer my heartfelt thanks
to you for your leadership in securing substantial increases in funding for the
National Institutes of Health (NIH). The increases of 1 5 percent that have been
approved for fiscal years 1 999 and 2000 are critical to our goal of doubling
the NIH budget by fiscal year 2003. For cancer survivors like me, your
commitment to biomedical research is of utmost importance. The research funded
by NIH yields information that may result in improved therapies for diseases
like CIVIL. Patients like me are the beneficiaries of your work, and we thank
you for your dedication to our cause. This is the first time The Leukemia &
Lymphorna Society has testified before the Subcommittee. This organization has
been dedicated to the fight against blood-related cancers for 51 years, but we
previously called ourselves the Leukemia Society of America. We testified before
you with that name. On February 1, 2000, we changed our name to The Leukemia
& Lymphoma Society and gave greater prominence to our mission by including
the tag line, "Fighting Blood-Related Cancers." The Problem of Blood-Related
Cancers When National Cancer Institute Director Richard Klausner testified
before this Subcommittee in February, he noted the reductions in mortality from
many cancers and also the fact that the mortality rates from liver cancer and
non- Hodgkin's lymphoma are still increasing. Our name change signifies our
dedication to reduce the mortality rate for lymphorna. The problem of
blood-related cancers remains very serious. About 650,000 Americans are living
with leukemia, lymphoma, and myelorna, and there will be 60,000 deaths from
these diseases this year. Although we have experienced impressive progress in
the fight against childhood leukemia -- a 57 percent decline in the death rate
over the last three decades -- childhood leukemia represents only about five
percent of those with blood-related cancers. The rates of remission from
blood-related cancers are improving and adults with these diseases are living
longer lives, but the cure rates remain too low. Clearly, there is much work to
be done. The Grant Programs and Patient Services Program of the U.S. As a
voluntary health agency, The Leukemia & Lymphorna Society raises funds to
support research on blood-related cancers. Our grants fall into three broad
categories: Career Development Grants; Translational Research Grants for
early-stage support for clinical research; and Specialized Centers of Research.
In our Career Development program, we fund Scholars, Special Fellows, and
Fellows who are pursuing careers in basic or clinical research. In our
Translational Research Program, we focus on supporting investigators whose
objective is to translate basic research discoveries into new therapies for
patients. The Society is very proud that the groundbreaking work of Dr. Brian
Druker, an oncologist at Oregon Health Sciences University and the chief
investigator on a study of a very promising new treatment for CIVIL -- called
STI-571 -- has been supported by a translational research grant from the
Society. Through the Career Development and Translational Research Programs, we
are currently supporting more than 400 investigators in 33 states and ten
foreign countries. Our new Specialized Centers of Research grant program (SCORE)
is intended to bring together research teams focused on the discovery of
innovative approaches to benefit patients or those at risk of developing
leukemia, lymphoma, or myeloma. The awards will go to those groups that can
demonstrate that their close interaction will create research synergy and
accelerate our search for new therapies, prevention, or cures. Since the Society
first began making grants, we have awarded $1 75 million in grants. We are now
awarding $23.5 million annually. The Society also supports a strong Patient
Services program which provides individuals with blood-related cancers and their
families important financial support, counseling, support groups, and other
services, which I previously mentioned. The Successes and Challenges of Research
on Blood-Related Cancers The history of research on and treatment of blood
cancers includes some very encouraging experiences and offers important lessons
about the cancer research effort. As you probably know, improvements in the
treatment of childhood leukemia have been impressive and have been accompanied
by reductions in mortality. The leukemia death rate for children in the U.S. has
declined 57 percent over the last three decades. How have we made these
impressive strides? We have invested in basic research to aid our understanding
of childhood leukemia and to provide insights into the best treatments for these
diseases. The Leukemia & Lymphoma Society is proud that we have supported
many leaders in research on leukemia, lymphoma, and myeloma, and financed many
important research initiatives. This country has also developed an unparalleled
clinical trials system for children and has enrolled the majority of children
with cancer in clinical studies. This effort has ensured that children get the
very best care, has steadily moved basic research findings from the bench to the
bedside, and has accelerated the quest for answers about the optimal treatment
of children with cancer. Our work is not complete. Among all diseases, leukemia
is still the number one killer of children under age 1 5 and affects ten times
as many adults as children. Approximately 550 children died from leukemia in 1
999. The effort to improve treatment of childhood cancers must continue. At the
same time, we must replicate the pediatric cancer research and clinical trials
system in a system for adults. Currently, only about 2-3% of adult cancer
patients participate in clinical trials, whereas the majority of children do.
Unless we can increase the rate of adult participation in appropriate clinical
trials, we will not be able to hasten progress in the fight against cancer. To
accomplish real progress against all blood cancers, The Leukemia & Lymphoma
Society recommends the following initiatives: - Increase funding for the
National Institutes of Health (NIH) by 15 percent in fiscal year 2001. This
level of funding sustains the progress toward doubling the NIH budget by 2003.
We believe this is a time of great opportunity in biomedical research. Molecular
biology is answering fundamental questions about human disease, and we need to
sustain our investment in basic research as well as fund translational and
clinical research to translate basic research findings into better therapies for
disease. - Honor the recommendations of the National Cancer Institute (NCI)
Bypass Budget. Under the provisions of the National Cancer Act, the NCI Director
is allowed to submit his budget directly to Congress. The Bypass Budget
recommends a responsible level of funding that would foster progress in cancer
research. The Leukemia & Lymphoma Society would also like to express its
appreciation to NCI for its decision to convene a Progress Review Group on
lymphoma, leukemia, and myeloma. This is critical time for the Institute to turn
its attention to the research portfolio for leukemia and lymphoma. As we have
previously noted, treatment of lymphoma still presents a serious challenge, and
an evaluation of ongoing research efforts will provide benefits to researchers
and patients. - Ensure Medicare and Private Insurance Coverage for Clinical
Trials Both Medicare and private insurance plans should be required to pay for
the routine patient care costs for cancer patients who enroll in clinical
trials. If a patient and his or her physician determine that enrolling in a
clinical trial is the best treatment option, that patient should not face fears
that his or her routine patient care expenses will be denied. However, such
denials are a possibility in Medicare and many private insurance plans. Although
most patients who enroll in trials ultimately secure coverage for clinical
trials, some do not and many more are discouraged from enrolling in clinical
studies because of concerns that reimbursement will be denied. Both the House
and Senate versions of the Patients' Bill of Rights contain
provisions mandating coverage of clinical trials, although the reach of these
bills is different, and the Medicare Cancer Clinical Trials Coverage Act would
require coverage in the Medicare program. We understand that these bills are not
in the jurisdiction of this Subcommittee, but we urge your support of them. A
properly functioning clinical trials system is critical to the translation of
basic research findings into improved therapies, and clinical trials coverage is
therefore an important complement to NIH funding. This is a very exciting time
for biomedical researchers and a time of great hope for patients with serious
diseases. Science is answering important questions about human diseases, and we
must do everything we can to facilitate and foster this work. Your role in this
effort has been critical. We urge you to continue your support for NIH and other
initiatives that improve the quality of life and health of those with serious
illnesses. It is a pleasure to appear before the Subcommittee today. On behalf
of The Leukemia & Lymphoma Society, I thank you for your time and attention.
LOAD-DATE: March 15, 2000, Wednesday
