Terry Rustemeyer,
R.N.
Mother of Melissa Rustemeyer
Albuquerque, New Mexico
.jpg) How
do I tell you what my heart is so full of, I only have words which
I hope can adequately convey my daughter, Melissa, and do justice
to her memory.
I can close my eyes
and see her. She stands 4' 10 and 3/4 inches tall, weighs about 92
pounds, with lightened blond hair, a spring in her step, a smirk on her
face and a mischievous glint in her eye. I see a teenager who was all
about her friends discovering new boys, playing her music too loud. A
girl just being a teenager.
She was a loving and
caring individual. She was extremely sensitive. She had a quick wit and
a cynical sense of humor. She was my protector. If her sister mouthed
off to me, she would always tell her not to talk to mom that way.
Melissa and Jamie would spend hours talking on the balcony of our home.
They were the best of friends.
I remember her
coming home from school one day and telling me her teacher had asked her
to explain Passover to the class. She told me what she said and I
laughed because she had mixed the story of Passover and Chanukah
together. She laughed and said, "It's OK, Ma. I'm the only Jew in the
class and they don't know the difference.
I
remember the day of her 16th birthday when she came up to me with a big
grin on her face, so excited that the boy she liked asked her out. To
the outside world, she was a happy, outgoing person who was very
self-assured. To those closest to her, she had a private side that hid
a dark secret. The secret was that she was bulimic. And she died
because of it on July 22, 1999, 11 days after her 16th birthday.
Did she think she
would die from it? No, because she was 16 years old and invincible. I
am a Registered Nurse. Did I think she would die? No. How incredibly
naive I was. Melissa weighed 92 pounds when she died, and for her height
that was the right weight for her. Outwardly, there was nothing to tell
you she was dying and yet she was, piece by piece, over a period of two
years. So what you saw on the outside was a beautiful girl, what you
didn't see was the electrolyte imbalance that killed her.
Melissa began her
decent into an eating disorder when she was 14 years old after a boy at
school told her she was fat. She wanted to be found out and left me
clues. After suffering for two months I found out about her eating
disorder and immediately sought help.
I brought her to see
our family practitioner who spoke privately to Melissa and came out of
the room to tell me Melissa promised her she would stop and everything
was going to be OK. It is a practice of my health care provider to
weigh all patients. I took Melissa twice in one week to see the doctor
for a knee problem. I don't understand why I was the only one to notice
why she lost 7 pounds in one week.
I live in
Albuquerque, New Mexico. We are a poor state and usually rank the
lowest on any national ratings. Thanks to the hard work and commitment
of Senator Pete Domenici this is not the case with Mental Health Parity
in the State of New Mexico. And I applaud his effort to make Mental
Health Parity legislated at the national level.
We desperately need
more research and education regarding Eating disorders so that health
care providers as well as educators can recognize those at risk.
We need research so
that we can come up with treatment modalities that are driven by
research and not by Insurance companies that will limit or refuse to pay
for treatment.
I am a Registered
Nurse and I work in the Emergency Department at a teaching hospital,
with plenty of resources. Why did the system fail me? But most
importantly why did they fail Melissa? Because there isn't enough
research and treatment for eating disorders.
The last 6 months of
Melissa's life were the hardest. I can know look back and see how
desperately ill she was.. I would talk with her and see how empty she
was inside.
We frequently
checked Melissa's potassium and it was consistently low so we gave her
potassium pills. If she had been a Diabetic and had consistently high
blood sugars, she would have been treated aggressively and her diet and
level of understanding regarding her illness would have been evaluated.
Furthermore, she would not have left the hospital until she was stable
regardless of insurance or ability to pay.
We do diabetic
teaching but no teaching for Eating Disorders. Untreated diabetes can
kill, so can untreated eating disorders. Melissa lost the fight but the
war rages on through the collective efforts of our educators, healthcare
professionals and legislators, we can win this war.
In January of the
year she died, Melissa's condition deteriorated severely. Her
psychiatrist was on vacation, so I called our family doctor for guidance
but she had none to give.
Albuquerque
is not a small town. I looked in the Yellow Pages for help and found
only two names that specialized in eating disorders, but neither was
taking new patients. I called a social worker I knew and he was able to
get her seen right away by a psychiatric resident where I work. Can you
imagine those parents that have no resources?
I went to find help
in the Yellow Pages, not knowing anything about practitioners, and my
primary care provider did not have anyone to refer us to. If we had more
research and education, our healthcare professionals would have
resources and we could become better informed.
My husband and I are
middle-class professionals, we have another child, if we were told
Melissa needed in-patient treatment, we wouldn't have been able to
afford it. What a crime to put a price on our children's lives.
I can not tell how
alone, embarrassed, ashamed and isolated her father and I felt. There is
little to no resources for parents and a family of the person with an
eating disorder. We became frozen with fear and hopelessness.
For the past 6 and a
half years, I have had to live the reality that I will never hold
Melissa, or hear her telling me, "I love you, Mommy" when she wanted to
get her own way, ever again.
We now have hope
where we once had despair because we have joined the Family Action
Council of the Eating Disorders Coalition and we will do whatever it
takes to make sure there are no more Melissa's out there.
I miss her laugh. I
miss her smile. I miss Melissa, with every fiber of my being. Eating
disorders can kill. Just ask me, I know.
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Scott Crow, M.D.
President, Academy for Eating Disorders
Professor, Dept of Psychiatry, University of Minnesota
 It
is a pleasure to be here today to talk about the critical need for
funding of research on eating disorders and to reflect on the
challenges that individuals with eating disorders and their
families face in seeking treatment. Terry Rustemeyer’s comments
highlight the fact that eating disorders are extremely serious
psychiatric illnesses with potentially deadly medical
complications. The experiences of her daughter Melissa emphasize
how important it is for us to improve our recognition of the
eating disorders, and to increase awareness about both the
seriousness of these illnesses and the wide variety of people
affected by eating disorders. Most importantly, they emphasize
the need for progress in the area of treatment research. We must
identify even more effective methods of treating eating disorders
and find the most efficient and practical ways to provide those
treatments. Furthermore, we need to make it easier for
individuals with eating disorders and their families to find
reputable and effective treatments.
Clearly, one of the
great needs in this field is for a larger number of innovative studies
identifying better treatments. At present, eating disorders are
seriously under-represented among Federally funded biomedical research
studies. For example, a search of the CRISP NIH database using the
search term diabetes mellitus reveals a total of 666 active federally
funded studies for type I diabetes. Similarly, there are 804 active
federally funded studies of schizophrenia. By striking contrast, only
54 studies of anorexia nervosa are found by searching in the same way,
and a mere 31 studies of bulimia nervosa. All four of these illnesses
affect similar numbers of people; all four of these illnesses affect
those who have them severely. Anorexia nervosa, bulimia nervosa, and
the other eating disorders deserve the same intense research efforts
currently being directed toward these other health problems.
In addition to
simply funding more studies, we sorely need studies, which are larger
and yield more convincing, definitive answers. Recent news reports have
highlighted advances in the treatment of depression and schizophrenia in
studies such as CATIE and STAR-D. A comparison of the size of each of
these studies in terms of numbers of participants is quite revealing.
For example, CATIE, the study of schizophrenia treatment, enrolled 1,493
individuals. The STAR-D trial, a study of treatment strategies for
depression, enrolled 4,041 individuals. It is sobering to think that
each of these single studies enrolled more individuals than have been
studied in TOTAL in the published world literature on the
treatment of anorexia nervosa. CATIE and STAR-D represent extremely
useful, “next step” evolutions in our understanding of how to help
individuals with depression and schizophrenia. Individuals with eating
disorders deserve the same type of intense, large scale research
efforts.
In the area of the
treatment research, the AHRQ report is a clear call to action and I
would like to highlight several important points. First, there is a
desperate need for large, definitive trials of treatments for anorexia
nervosa. Anorexia nervosa is common, carries the highest mortality and
the highest suicide rate of any psychiatric illness, and yet is one of
the psychiatric illnesses we least know how to treat. Moving quickly to
find more effective treatments will literally be life saving.
Second, in order to
guide studies of anorexia nervosa (and the other eating disorders) we
need to better understand the changing demographics of these conditions
and develop our interventions accordingly. For example, there are now
many reports of anorexia nervosa occurring in women of wider age ranges
(both younger and older), and men now seek treatment more often than
they once did. We must improve awareness among practitioners that these
are not white upper-middle class disorders and develop treatments that
are appropriately tailored for women and men across the life coursed.
.
Third, while there
is a need for intense focus on anorexia nervosa, we cannot stop making
progress on treatment for bulimia nervosa and binge eating disorder.
Much has been learned, and effective psychotherapy and medication
treatments are available. However, whether measured by the speed with
which treatments work, or the percentage of people for whom they work,
or the persistence of treatment response, the good progress we have made
is nowhere near good enough.
Finally, there is
the important issue of treating individuals with “atypical” eating
disorders, also known as eating disorders, not otherwise specified.
These individuals have important and debilitating eating disorder
symptoms but do not fit neatly in to our usual diagnostic categories.
At present, we know virtually nothing about how to provide help to these
individuals and we must make assumptions based on what we know can be
helpful in anorexia nervosa or bulimia nervosa. This situation must
change; this diagnosis is actually more commonly made than anorexia
nervosa or bulimia nervosa in most clinics. What we call “atypical” is
actually quite typical, and we need to learn how best to help.
Changes must also be
made at the level of treatment provision. Most importantly we must
improve our efforts to ensure that providers access and utilize the
rapidly growing knowledge base about effective treatments. This is
often referred to as the use of “evidence-based treatments” and this is
very different from simply presenting evidence on numbers of people who
get better with a given treatment (as sometimes happens now.
Evidence-based treatments (that is, treatments that have been tested in
scientifically rigorous designs and shown to work better than no
treatment, or better than being on a waiting list for treatment, or
better than other comparison treatments). If any of us were diagnosed
with and illness-cancer for example, we would want, expect, and in fact
demand to be treated using approaches that have been definitively shown
to be helpful. Individuals with eating disorders deserve no less.
Armed with this
expanding knowledge base about treatments, the final step is improve
access to these treatments. Parity of coverage for eating disorders and
other psychiatric conditions is a cornerstone of this access. A second
crucial piece is to develop a system of credentialing to identify those
programs, which provide such evidence-based treatments.
If increased funding
is available, researchers in this field are poised to make discoveries
that will transform our approach to eating disorders treatment, and this
transformation will save many, many lives.
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Ovidio Bermudez,
M.D.
President-Elect, National Eating Disorders Association
Tulsa, Oklahoma
 Ovidio
Bermudez, M.D., is the Medical Director of the Eating Disorders
Program at Laureate Psychiatric Clinic and Hospital in Tulsa, OK.
He is Clinical Professor of Pediatrics and Psychiatry at
University of Oklahoma College of Medicine and an Adjunct
Associate Professor of Pediatrics and Nursing at Vanderbilt
University School of Medicine and Nursing. He is Board certified
in Pediatrics and Adolescent Medicine.
Dr. Bermudez is a Fellow of the Academy for Eating Disorders, the
Society for Adolescent Medicine, and the American Academy of Pediatrics.
He is President-elect of the National Eating Disorders Association (NEDA.html).
He Chairs the Medical Care Special Interest Group of the Academy for
Eating Disorders and is Co-Chair and Liaison to the U.S. for the
Hispano-Latino-American Special Interest Group of the same organization.
He is founder and past-President of the Eating Disorders Coalition of
Tennessee (EDCT).
Dr. Bermudez has lectured nationally and internationally on eating
disorders, childhood obesity, and other topics related to adolescent and
young adult healthcare and has been recognized for his dedication and
advocacy in the field of eating disorders.
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Jeanine Cogan,
Ph.D.
Policy Director, Eating Disorders Coalition
Washington, D.C.
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