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Raising Health Awareness Through Examining Benign Brain Tumor Cancer, Alpha One and Breast Implant Issues.
Subcommittee on Health
Mr. Lloyd Morgan
Thank
you Honorable Chairman, Michael Bilirakis and the whole Subcommittee on Health,
5 of whom are among the 75 cosponsors of HR239, the Benign Brain Tumor Cancer
Registries Amendment Act, for allowing me to be here today. On April 28th 1995 I went to lunch with a colleague from work. Without warning or prior symptoms, I had a 45-minute grand mal brain seizure. My wife was told, "You better get use to it, honey. He has between a few hours and a few days." I spent 11 days, 8 in critical condition, at the hospital. The surgery took 12 hours. I was off work for 4 months. The reason? I had a peach sized "benign" brain tumor! Unlike most "benign" brain tumor survivors, I escaped with only a minor deficit. Carla
Brinegar had the same tumor. It
was, like mine, completely removed by surgery.
It has since reoccurred 5 times. She
is now in a Hospice, blind in one eye, unable to speak, unable to care for
herself in anyway. This is a "benign"
brain tumor! Jeff
Licht had a pineal tumor in his brain completely removed in 1993.
It has reoccurred twice. It
is now inoperable and growing. He,
too, has a "benign" brain
tumor. The dictionary defines benign
as harmless. All
brain tumors are malignant by location. I
am an electronic engineer. I am
trained to use data in order to understand how the world behaves.
As soon as I came home from the hospital I tried to find the data for "benign"
brain tumors. I quickly learned
that most state cancer registries, including California, where I live, did not
collect data on "benign" brain
tumors because they are not labeled as cancer.
I am not a person who sits back when confronted with a challenge. Last year California corrected this oversight with the
passage of AB 48. My Congresswoman,
Barbara Lee picked up our cause. As
a result HR 239 was introduced in the House. I
am involved with various brain tumor organizations.
I am active in the North American Brain Tumor Coalition (NABTC) and a
member of the Board of the Central Brain Tumor Registry of the United States (CBTRUS).
I attend several scientific conferences and patient symposiums each year
(this week I will be at the Society of Neuro-Oncology's meeting, here in DC).
But, please understand, I'm here today, not as a member of any organization.
I'm here as a "benign"
brain tumor survivor. HR 239: What it doesHR
239 amends the Cancer Registry Act to include data collection of "benign"
brain tumors. HR 239 is an ideal
bill for Congress to pass this year. It
is non-controversial, has wide spread support from the cancer surveillance
community, brain tumor researchers and clinicians, patients and their families.
Its cost is very small (an estimated $923,520).
It will provide an accurate description of brain tumors in our country so
that we can fight this enemy offensively. I
am sure you seldom get an opportunity to correct such a tragic oversight without
either controversy or significant cost. "Benign"
Brain Tumors The most common "benign" brain tumors are:
"Benign"
Brain Tumor Statistics "Benign"
brain tumors are estimated to number about half of all brain tumors.
Approximately 21% of children's brain tumors are "benign".
Since primary ("benign" and malignant) brain tumors are the leading cause
of cancer death in children, cancer registries already collect most of these
"benign" tumors. Collecting
data on all "benign" brain
tumors will amount to less than 3% of all data collected by cancer registries. Meningiomas are 27% of all
brain tumors, and 35% of all brain tumors in women.
For women, this "benign"
brain tumor is more deadly than breast cancer; 69% survival compared to 84%.
In Norway, where data is kept on "benign"
brain tumors, the incidence rate for men has increased by 250%; for women 280%
for over three decades. Is this
happening in the United States? We
cannot know without data. While 21 states do collect
"benign" brain tumor data, the remainder do not.
HR239 will correct this oversight. There are now an estimated
267,000 people with "benign"
brain tumors including members of this Congress. I urge this Subcommittee to pass HR239. I urge the Energy and Commerce Committee to pass HR239. I urge the House of Representatives to pass HR239. Thank you so much. Are there any questions?
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