Government Reform and Oversight Committee
February 4, 1998
Ms. Becky Nippert
My name is Becky Nippert. I am forty-four years old and live
in Memphis (Germantown), Tennessee. In '75 I became a registered
nurse, and in '82 I became a nurse anesthetist. In '89 when
I was 35 years old, I was diagnosed with breast cancer. At
this time I was married with three small children, age: 5,
3 and 5 months. I had a mastectomy, placement of a Hickman
catheter to do six months of intense chemotherapy and two
breast reconstructive surgeries that year. I was very sick
from treatment and lost my hair. In '93 the cancer returned
in the same area. The surgery I had removed much of the chest
muscle to prepare me for the 37 radiation treatments I received
while working full-time and raising my three children as a
single parent. My marriage ended in divorce four months before
the recurrence. While I took radiation, I was put on the drug
Tamoxifen, which was short-lived because of the severe side
effects. Six months after finishing radiation, I had another
reconstructive surgery.
Seven weeks later, in August '94, I went for my cancer checkup
and reported to my doctor rib pain, genial loss of a sense
of well-being and fatigue. He checked the tumor marker Ca
15-3, which is a blood test that, when elevated, indicates
cancer activity in the blood. Normal is 3 to 27. My previous
results had never been elevated. The test result was 49. An
enlarged lymph node had come up in my neck and my doctor ordered
a bone scan which showed tumor invasion in my sternum and
two ribs. I got a rib biopsy on the rib which was fractured
by cancer activity and it confirmed metastatic breast cancer
to the bones. He recommended the only thing left, the stem
cell rescue or bone-marrow transplant. I had heard of some
success with this for Iymphomas or leukemias, but in all the
patients I talked to with breast cancer who had this therapy,
none had a good result from it.
All reported recurrences rather quickly after that or their
families reported they had passed. This is an accepted treatment
covered by insurance. A second opinion was to get my ovaries
out, get my affairs in order and get the bone-marrow transplant.
My original tumor was estrogen receptor positive, which means
tumor growth is aggravated and enhanced by the presence of
estrogen. I had ovary surgery, thereby cutting out most of
the estrogen production in my body. I did get my affairs in
order and this relieved me of some stress. While I was thinking
about the bone-marrow transplant and weighing what to do,
I started the first three standard chemo treatments to prepare
me for it. The hospital where I went put me on the bone-marrow
transplant unit. The person in the room next to me was on
kidney dialysis for shutdown of her kidneys secondary to the
bone-marrow transplant. The patient in the next room was sent
to the intensive care unit for septre shock. The 32-year old
female patient next to her was rocking back and forth on her
bed babbling to herself. When I asked what was wrong with
her, I was told she had been isolated 52 days and was in an
isolation psychosis, but she would probably eventually be
all right. After this chemo, my tumor markers went up to 59,
and in the seven weeks since my bone recurrence, my tumor
load had increased from 3 to 13 bone tumors. My bill for one
week in the hospital for chemotherapy was $33,000.00. At this
point I heard about an experimental treatment that had positive
results from trials in Monterrey, Mexico. Trials had also
started in Freeport, Bahamas. Since the oncology experts had
given me a less than one percent for survival, and I didn't
see how the bone-marrow transplant could help, but only harm
me further, I decided to try the treatment. I went to Freeport
and got on this therapy, which was to be given by IV three
times a week after I go back home.
After being on the therapy two weeks, my tumor markers went
down to 49 and in the next few months they went to 41 to 29
to 21 and then down in the teens and to this day have not
been elevated. My tumors started to disappear on the bone
scans. I aborted the pursuit of the bone-marrow transplant.
My quality of life was good and most of my bone pain subsided.
In September '95, when I was trying to order new treatment
from the company, I was told after repeated attempts to reach
them that the company had been raided by the F.D.A. and there
would be no more distribution of this treatment in this country
again. No explanations were given. I had been cut off from
the therapy that was making me well. I wrote President Clinton
and received a form letter from the White House. I wrote the
Commissioner of the F.D.A., David Kessler, several times and
never personally heard from him, but got form letters from
the F.D.A. The last one I received said that they were sorry
that they could be of no further assistance to me. I wrote
my Senators and Congressmen. To this day, two and a half years
later, I still don't know what happened. I was able to get
some extra treatment from a nearby hospital which ad used
it prior to the F.D.A shutdown.
My local doctor didn't feel like he could treat me anymore.
I asked the doctor in Freeport, Bahamas, to let me have some
of the medicine. I knew there were about 2000 doses of the
treatment in a freezer in that medical clinic down there.
I told her I would keep quiet and would move myself and children
down there. She said no. I found out that the F.D.A. had gone
down to question her and investigate. This is the same agency
I called and could never get an answer that they even knew
anything about it. I was able to get a small supply and a
freezer to keep in my home. Three times a week I struggled
to get IVS started on myself to administer the medicine. Many
nights it was a blood bath, sticking myself up to nine times.
Thank God I was a nurse with the ability to do this. When
the medicine was gone, I still had three bone tumors.
In February '96, I came to this building and appeared before
a subcommittee at a hearing of the Commerce Committee to gain
access to the treatment that had been shutdown. Four of us
patients on this specific therapy testified and two other
patients came to lend moral support. We pleaded to get our
treatment back. We all were recovering and doing well on it.
Nothing happened to help us and today three of those patients
are dead and one on his death bed. Only two of us are still
alive, and we were the ones that were able to stay on the
medicine longer than the others. We were all given the death
sentence by conventional medicine. We tried an unconventional
new therapy. We were getting our lives back and doing well
when the medicine was pulled with no explanation or help from
anyone. This negligence killed them. In my field it is called
malpractice.
There was no one we could find to help us as patients. I
heard on the second panel that today there is a lawyer who
represents patients to the F.D.N Why, in the run-around and
phone tag with all these important people, were we not told
about him? Is this something new or something that was not
available two years ago? No one was there for us. One person
on that committee said they wanted to do no harm. Let me tell
you what goes on down in the trenches. I am a cancer veteran.
I have been there and done that. My friend, Rosemary, got
some metastasis in her lung from breast cancer. She got the
stem cell rescue at Christmas and died New Year's eve of liver
failure, not from the cancer, but the treatment. She is dead
at 42-years old. Merrilee Malcom, my friend from Atlanta,
wanted alternative therapy and begged for it after being refractory
to standard therapy. She died at age 32. She was written off
and not helped after chemo. They told her she failed therapy.
She did not fail chemo. Chemo failed her. Please wake up.
Many more people have died from cancer than in the holocaust,
and we are even having to debate this? We, as a country, have
failed miserably in this area.
I have been a nurse and a nurse anesthetist my whole adult
life. I tried everything conventional first. It didn't work
and when I found something that did, my government cut it
off with no provisions for the patients that were benefitting
from it. Many patients that were doing well on this treatment
have died. The only thing they were protected from was hope
and life. Since then I have been on a treatment from Germany.
I have been totally cancer free with clear scans since last
summer. I am alive today because of prayer and alternative
treatments. At this point give us the treatments we need.
Remember we were written off and given the death sentence.
Is this inhumane to do research on humans? I was glad to be
a guinea pig. Speaking as a guinea pig and cancer patient,
I say no. We have nothing to lose and maybe something to gain.
We can advance medicine in the process.
We don't have a powerful lobby like the pharmaceutical companies.
After we are diagnosed, cut on, treated with poison and then
radiated, most of us are worn out. We have then become victims
of the cancer industry and most can't speak for themselves
anymore because they have been beaten down in every area.
Conventional therapy has had total control from 50 to 100
years. We have more cancer and more people dying from cancer
than ever before. We are not exploring the unknown or allowing
people with different opinions a chance. We only go for mediocrity
and maintaining the status quo. We are falling behind and
are definitely not on the cutting edge. We put down anyone
with an individual idea or something new and original. We
stay in our comfort zones at the expense of people's lives.
We don't branch out into areas we don't fully understand.
How can we when the requirement to approved treatment is $240,000,000
and ten years of trials, the last of which is on humans.
Overseas where the medical giants are, they are allowed to
use different procedures without these almost totally impossible
requirements. Many people here are too weak to travel to other
countries or can't afford it. I, and many others, would like
therapies with decreased side effects. Give us the choice.
Medicine can be advanced so that we can find out what works
well on different types of cancer. Why not give us our treatment
of choice? Remember we are talking mainly of people here who
are at the end-stage. What do we and what do you have to lose?
The patients, more than anyone else, know they may die. They
have already been written oś Open up to more than one bias
and give other types of therapies a chance. It has to come
from you. The doctors just can't start doing it unless it
is approved by you.
I have a friend in Seattle, Washington, who is a radiation
oncologist, and lost his medical license for using alternative
therapies in his practice. He gave his patients choices and
they did well. When he wanted to appeal to the Supreme Court,
he was told he couldn't do that because it was against the
ruling of the American Medical Association, the American Cancer
Society and the National Health Institute. They are basically
immune and have no accountability. This is where it ended.
The heads of these and the H.M.O.s, who now control medicine,
make seven-figure salaries. They will keep giving grants in
the same areas, and we aren't doing anything but advancing.
Please open your eyes. I am alive today in spite of being
abandoned and restricted by the government while others have
not been so fortunate. I was on my own fighting to stay alive
with no help at all from this free United
States, only obstacles. This is the ultimate injustice.
Please spare me the cliche "that you don't want the patients
to be harmed. " I am today cancer-free, and have been working
full-time doing anesthesia again for over a year after having
been on disability for 22 months. I believe God spared me
to speak for those who can't speak for themselves. By my story,
you can see the near impossibility to get anything other than
conventional therapy. Please don't turn your back to the problem
and neglect so great a need. Don't wait until it happens to
your wife, husband or child, or your prostate or breast. Don't
wait until your back is against the wall or your neck on the
line. I plead with you: Help patients get other therapies
that may save their lives.
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