OFF THE PRESS
PNA Spotlight: Dr. Gail Rosseau
 This month the PNA Spotlight shines on Dr. Gail Rosseau, a member of our Scientific Advisory Panel and a fine neurosurgeon with the Chicago Institute of Neurosurgery and Neuroresearch in Chicago, where she is director of Cranial Base Surgery. She is also an assistant professor of neurosurgery at Rush Medical College, with the Rush University Medical Center in Chicago. She specializes in endoscopic surgery for pituitary tumors, and has extensive experience with meningiomas, acoustic neuromas, head and neck malignancies, and other cranial base disorders.
Dr. Rosseau went to medical School at George Washington University, and stayed on there to do an internship in general surgery and a residency in neurosurgery under Professor Ed Laws. She also completed a fellowship at Val-de-Grace Hospital in Paris, France, and another fellowship in cranial base surgery and microvascular surgery at the University of Pittsburgh's Presbyterian-University Hospital in Pennsylvania. She joined the Chicago Institute of Neurosurgery & Neuroresearch in 1992.
PNA CEO Bob Knutzen had this to say, “She is not just enormously interested in scientific issues, but she is also a leader in neurosurgical organizations, like the American Medical Women’s Association.”
He added, “She is a no-nonsense type of person: a very smart and helpful scientist and surgeon who takes pride in belonging to the PNA and helps spread the word about us worldwide.
|
|
|
|
Dr. Rosseau is also a remarkable source of information about qualified surgeons around the world. When patients contact us from another country, she invariably knows or is in touch with a neurosurgeon there who can help vulnerable patients. We are very grateful to have her help us in our work."
|
Pituitary Facts to Remember
The PNA recently came up with a list of facts about pituitary disease that bear repeating. They form the basis of what we do – and the message we are intent on spreading. Words to live by!
1.) The pituitary is the master gland of the human body. It is so called because many parts of the body are directly or indirectly affected by its function.
2.) The pituitary is the center of human sexuality and reproduction. Other parts of the body do most of the work but the pituitary initiates and controls the processes! We know that between 30 and 40% of the population suffers sexual dysfunction at sometime in their life.
3.) The pituitary controls the life hormone, ACTH, or (simplified) cortisol without which we would soon die. Cushing's disease, then, from the adrenal or pituitary gland is a deadly and very difficult disease both to diagnose and treat.
4.) The pituitary controls/regulates the thyroid gland. Rarely, if ever, does one function well without the other. This is often overlooked by many doctors.
5.) The pituitary, to a very large extent, regulates the metabolism in your body. How much or how little you eat, and disorders such as bulimia and anorexia, primarily stem from pituitary function. So, of course, do obesityand simple (but often hard to correct) weight gain.
6.) The pituitary regulates mood, behavior and a startling number of mental and emotional health issues. (Bi-polarity has been linked to the pituitary gland).7. Your size, shape and height are directly linked to growth hormone, which is also produced by the pituitary gland.
8.) By a separate hormone, the pituitary regulates thirst and urinary output (diabetes insipidus results).
9.) Breast milk, the opening of the birth canal and regulation of the menstrual cycle are also pituitary gland functions!
There are many more things to know, but you can find it all in the Pituitary Patient Resource Guide. However, and this is the key: next time someone asks "What is so special about the pituitary gland?" Your answer should be - EVERYTHING! It is a HUGE issue, but a very small gland! |
Touch Briefings: US Endocrine Review - December 2007
Robert Costello – The Prophet of Pituitary Adenomas
A report by Edward R. Laws,
Department of Neurosurgery
Brigham and Women’s Hospital
and Robert Knutzen, Chair/CEO, Pituitary Network Association
In the 1930s a young investigator at the Mayo Clinic in Rochester, Minnesota, had a unique opportunity. Robert Costello conducted a careful and systematic analysis of pituitary glands obtained at post mortem examination from patients who had no obvious symptoms of endocrine disorders. The results were published in 1936. 1 In this study of 1,000 human pituitary glands, he discovered more than 200 benign tumours, most of them quite small. This unexpected finding went relatively unnoticed by the general medical community at the time. This may have been because it was published in a pathology journal, or because it came at a time when tumours and cysts of other endocrine glands were being recognised and reported. At that time, the recognition of acromegaly occurred quite rarely and cases of Cushing’s disease were few and far between. Most of the pituitary adenomas being diagnosed and treated in the era before magnetic resonance imaging (MRI) scans and sophisticated endocrine laboratory test were macroadenomas that produced headache and progressive visual loss. In those days it was thought that pituitary adenomas accounted for only about 6% of primary brain tumours.
It was not until the 1970’s that the current ‘explosion’ in the diagnosis and treatment of pituitary tumours began and the importance of Dr. Costello’s study was validated. The factors that have led to our current state of knowledge include advances in a number of areas. The revival of the trans-sphenoidal microsurgical approach provided a new, safe way of approaching the sellar area where these tumours begin. The concept of the microadenoma, a small benign tumour that could cause disease because of its endocrine hyperactivity, was critical.
The pituitary microadenoma was a lesion that could be removed selectively using microsurgical techniques while preserving normal pituitary function. The advent of accurate hormone testing allowed these tumours to be diagnosed at a relatively early stage, and the actual incidence of pituitary tumours began to be recognised. Over the past 100 years systematic attempts were gradually made to link hormonal excess or deficiency to symptoms and patient complaints. The most common symptoms were enlarged extremities (acromegaly) and obesity/striae (Cushings’s). Important related symptoms such as mood swings, infertility, psychological problems, high blood pressure, arthritis, depression and apathy were often attributed to health issues unconnected to hormonal disorders. Between 30 and 40% of the population experiences sexual dysfunction – an important symptom of pituitary disease. Obesity is a major national health concern, along with osteoporosis and diabetes mellitus. All are unmistakably linked to hormonal issues.
The pioneering neurosurgeon and pituitary psychologist Harvey Cushing produced a clear, compelling and decisive exposition of the findings in patients with pituitary adenomas. The true significance of these findings, and the extent of the prevalence and importance of pituitary disease, has yet to be fully appreciated. The total number of pituitary adenomas has probably not changed over the 70 years since Dr. Costello’s initial discovery of the prevalence of pituitary adenomas.
A recent meta-analysis of this prevalence was conducted on behalf of the Pituitary Network Association (PNA) by a multidisciplinary team of quality researchers. 2 Their examination of series of both autopsy and imaging studies from Dr. Costello’s time to today essentially confirmed his numbers. Therefore, the surprise is not the high number of adenomas found, but that the medical community has been generally unaware of the true prevalence of these lesions. The discovery of advanced pituitary imaging, first with computed tomography (CT) and then with MRI, allowed for the detection of pituitary tumours of all sizes and for the development of effective medical, surgical and radiotherapeutic treatments. Furthermore, the results of treatment could be thoroughly evaluated with imaging and laboratory follow-up. It is likely that Dr. Costello would be pleased to see the current state of the diagnosis and treatment of pituitary adenomas that derived from the findings of his laborious studies.
We now have data showing that pituitary adenomas account for 20% of surgically treated primary brain tumours. A large number of these adenomas are treated with medication alone or with surgery and radiosurgery. In some cases they are not treated at all. Doctors can recommend continued observation of the tumours and follow them with a “wait and see” attitude, anticipating that neither tumour growth nor possible infarct or haemmorrhage will interfere with the patient’s survival or quality of life. This conservative philosophy demands rigorous and frequent follow-up imaging and visual and laboratory testing.
New cases of pituitary tumours are diagnosed in about 17 people per million on the general population per year. At any given time, as many as 100 people per 100,000 are living with pituitary tumours. It is distinctly possible that a similar number of cases go unreported or undiagnosed each year, even though the characteristic symptoms may be evident to a practiced endocrine professional or pituitary surgeon. There is a legitimate concern about the large number of pituitary tumours that remain undiagnosed and untreated. The symptoms of these tumours include some of the most common complaints that individuals may experience. Putting them together in an accurate diagnosis is a major challenge for many physicians. Raising awareness among the public, medical practitioners, public health authorities and federal health agencies (e.g. the National Institutes of health [NIH] and National Communicable Disease Center [NCDC] is an inescapable need and remains an important goal. 3
Four very important segments of society are in dire need of pituitary/endocrine/hormonal education. The first segment is the general medical community, (this means the medical professionals, nurses, nurse practitioners, physicians’ assistants and doctors) who usually see the patient first. This is the critical “tipping point” for most patients. They wonder: “Will I be believed, tested, diagnosed and referred to an expert for confirming the diagnosis and recommending expert treatment?” If so, the patient is among the lucky few. Too often, the answer is “no”. Doctors tell them that their symptoms do not match the classic criteria for clinical symptoms. If the patient’s symptoms do not match the doctor’s knowledge and experience of pituitary disease, they may be wrongly attributed to other conditions.
The second segment of society that needs education on hormonal issues is the mental health community. This is where patient turns for solutions to sexual failure (lack of libido), mood swings, inability to concentrate or focus on the task at hand, workplace insubordination and other psychological problems. The correct diagnosis is often not forthcoming because the mental health practitioner s trained to look for signs of a difficult family background, environmental factors, workplace stress and other correlates of behavioural difficulties, rather than hormonal imbalance.
Hormonal failure (excess of insufficiency) is rarely suspected or discussed. Hence, another treatment opportunity is often lost.
The third segment comprises the patient and the patient’s family. They can easily identify a host of symptoms and complaints, yet the very significant symptoms - the results of a malfunctioning master gland – are rarely recognized or considered in the search for a diagnosis. Finally, society at large is undereducated on the subject of hormonal health.
Only recently have we begun to understand the many types of diabetes and thyroid problems, to mention but two recognizable issues. Most other hormonal problems, of equal value to the patient’s well being, are sadly neither diagnosed nor treated in a satisfactory fashion.
- Costello, R.T., Subclinical adenoma of the pituitary gland, Am J Pathol. 1936 12: 205-14
- Ezzat, S., Asa, S., Couldwell, W. et al., The prevalence of pituitary adenomas, Cancer, 2004, (101)3 613-19
- Ezzat, S., Knutzen, R., Dispelling the myths about rarely diagnosed pituitary disorders, U.S. Endo Rev., 2005,1-3
|
Patient’s Perspective: Just When I Thought Everything Was Under Control
By Danette M. Griffith
After 25 MRI’s with the last 10 or so showing no changes, I thought I was past everything to do with my pituitary disease. I thought I could settle in to taking my hormone replacements of synthroid and hydrocortisone on a daily basis and be done with it. I knew I had to be careful in the heat and I wear my Medic Alert bracelet. So, done deal. Until I moved.
But let’s take it a step back and fill in some of the history. In 1989, at the age of 26, I was diagnosed with a pituitary adenoma because my prolactin level was out of sight. This led to successful surgery. As much of the adenoma was removed that the surgeons were able to reach and my endocrinologist and I worked together to find the right levels of hormone replacement. Five years later, a MRI revealed that the adenoma had regrown to a size where surgery was recommended again. Four months after surgery, I had 30 treatments of radiation and once again, my endocrinologist and I worked together. With follow-up MRIs and hormone levels checked by my primary doctor, it has been concluded that the adenoma has not changed in 10 years. I haven’t seen an endocrinologist for several years.
This summer my husband relocated and with that comes new doctors, dentists, optometrists, you name it. My new primary doctor ordered blood work and discovered that my total cholesterol has gone up and my triglycerides have shot through the roof. He recommended that I see an endocrinologist for a thorough consultation.
I met with her in October 2007 and a lot of what I had been doing over the years was affirmed. Then she asked, “What about growth hormone?” And I said, “What’s that?” She began to tell me is that only until fairly recently had the link been made between pituitary disease in adults and the need for growth hormone after the demise of one’s pituitary gland. A blood test confirmed that I likely have Adult Growth Hormone Deficiency. Who knew? Gaining weight around my waist is just a genetic trait in my family. I was feeling depressed several years ago and was diagnosed with clinical depression and treated. I was told that too much stress in my life contributed to my problems sleeping at night. All of these are possible symptoms of AGHD.
I’m in the process of seeing what my health care plan will cover and I am researching all I can about the growth hormone. So, what’s the lesson I learned? Life isn’t about being in control. Life is setbacks, leaps forward, discoveries and learning. Continuous learning.
|
Patient’s Perspective: Luanne Nieman
|
To Bob Knutzen and the entire staff of the PNA,
Thank you again and again. I have written the PNA and talked with many of you over the past nine years since I was diagnosed with acromegaly. I found you through my sister, Jane Frankie, a nurse in Arizona who suspected acromegaly following our visit at my son’s wedding in California. She returned home and consulted with a colleague physician, who directed me to Dr. Charles Wilson, MD at UCSF, and she directed me to the internet – “acromegaly” – where every entry led me to the PNA! I also did research at our local community hospital library – again the PNA was sprinkled throughout the many reference materials. The problem with the library archives was the extensive unfamiliar vocabulary of medical terminology! The PNA has been my constant source of information during this journey! I have even spoken by telephone with Bob Knutzen, himself, on several occasions. I have appreciated the timely response, personal interest and attention, and true sense of caring and sincere interest of everyone, every time I have spoken with you or corresponded with all of you. I could not live without the Network Magazine and the Pituitary Patient Resource Guide. The PNA has been a much better source of information than my uncoordinated, too busy medical providers. With the exception of my endocrinologist, many doctors are oblivious, know very little, and listen distractedly or not at all. I am my primary medical manager and caregiver and my input is often ignored or dismissed, even when I put my concerns and requirements in writing. Doctors outside of the specialty and hospitals are oblivious. I have suggested the PNA along my journey and am often met with a shrug. But I have lived, (THANK GOD!!!) despite their mistakes.
I was recently surveyed by Novartis because I take Sandostatin-LAR and at the conclusion representatives said I was her last survey and was the best informed. Thank you PNA! On January 26th, 20998, I attended Stanford University’s Pituitary Information Day and I also attend meetings of the Stanford Brain Tumor Support Group (occasionally) and with the exception of speaking with Bob Knutzen, I had never before met or talked with another diagnosed and treated acromegaly patient. After nine years, I finally met another acromegaly patient face to face. There were only about four or five of us in the attending group. Regardless of the pituitary diagnosis, the patients needed to talk. It was universal. They needed education and support. I especially appreciate the patient letters in PNA publications. It surprised me that people attending the information day recommended the PNA before the doctors (on the PNA Board of Directors) did. They should have had literature and membership forms for everyone!
I learned about the Stanford University Information Day from a small article in the local newspaper and of course from the PNA magazine! I mention this because for nine years I have been treated at Stanford, including radiation and MRIs for my residual tumor, and I have seen a prominent neurosurgeon, (Dr. John Adler, M.D., who helped develop the Accuray proton surgical procedure) and a radiologist for acromegaly. I have had surgeries at Stanford. I am in their computer, and did not get a single communication, written or verbal, regarding the event! In fact, even the telephone and email contacts were hard to navigate. There was no confirmation after I enrolled, but I showed up in good faith. The doctors, especially Dr. Laws and Dr. Katznelson, were especially informative and responsive. It was a very generous and well orchestrated event that I hope indicates that Stanford is stepping up to the plate, at last!
Well, I have gone on and on, haven’t I? Again, I am so appreciative for the help and consequential confidence you have given me over the years. Doctors should insist that every patient avail themselves of PNA at diagnosis because medical providers seem too busy to track, educate, respond and treat even when patients are responsible and informed. Doctors, themselves, need to subscribe to the PNA, recommend it to doctors outside of the specialty because the pituitary is inclusive. Bob Knutzen, a hero, has made a remarkable contribution.
Thank you!
Sincerely and with gratitude,
Luanne Nieman |
PNA Spotlight: Dr. George Chrousos
This month the PNA spotlight focuses on Dr. George Chrousos, an esteemed member of the PNA’s Scientific Advisory Board and the 2006 recipient of the Gentle Giant Award. PNA Founder Bob Knutzen adds the following: Dr. George Chrousos is still a star of pediatric endocrinology, endocrine mental health and Cushing’s disease in its many ugly forms and intolerable misery. Though he is now head of pediatric endocrinology at Aghia Sophia Hospital in Athens, Greece, his fingerprints still show up on work from the NIH in Bethesda, MD, where he spends time every year. He is one of life’s truly rare individuals about whom his many colleagues say, “I just love that man! What a perfect gentleman to the core.”
Dr. Chrousos is an eminent professor and Chairman of Pediatrics at the Athens University Medical School. He has focused his research on the hypothalamic-pituitary-adrenal (HPA) axis and has extensively studied the neuroendocrine alterations associated with mood disorders, sleep, pain perception, and immune function. His laboratory is recognized worldwide for its work on the glucocorticoid signaling system, diseases of the HPA axis, such as Cushing's syndrome, and the physiologic and molecular mechanisms of stress. Dr. Chrousos has contributed immensely to the biomedical literature and his work has provided new insights into a variety of chronic complex disorders. He has written more than 1000 scientific papers and his work has been cited in about 35,000 other scientific articles, an irrefutable testimony to the importance and influence of his research. He is one of the most cited physician scientists in the world (ISI highly cited). His work has educated a broad community of physicians and scientists around the world. As a mentor, he has helped to develop the careers of many young physicians and scientists, several of whom are now professors and chairpersons in Europe, the United States, Australia and Latin America.
An outstanding teacher, he has had a number of visiting professorships and given prestigious lectures throughout the world. Dr. Chrousos has received numerous national and international awards for his work, including election to membership in the prestigious American Society of Clinical Investigation and the Association of American Physicians. He was recently inducted as a master of both the American College of Endocrinology and the American College of Physicians. He trained at a number of institutions of higher learning, including Athens University, Georgetown, and NYU. He worked for many years at the National Institutes of Health and is currently a Senior Investigator in the Reproductive Biology and Medicine Branch of the National Institute of Child Health and Human Development, working on a study of patients with Cushing’s syndrome. |
Star Helps PNA Reach Out To Spanish Speakers
 Guillermo Huesca (www.guillermohuesca.com) is one of the most recognized celebrities in the Hispanic TV and film market, recently hosting the popular television show “TRATO HECHO” (the Spanish version of “Let’s Make A Deal”). Guillermo has developed a following of over 50 million viewers who have watched him for several years. Bilingual in English and Spanish, he is a seasoned professional and has starred in many films, as well as in national and international television and radio commercials. In his 40’s, Guillermo has enjoyed exceptional health and he has lived an active life up until January 2008.
Guillermo went to sleep on evening of January 11th and woke up in middle of the night with an enormous headache. He quickly took two aspirin but his pain did not improve. Guillermo took two more aspirin, but starting feeling hot and nauseated and then he got the chills. One of his eyes began to droop and he started throwing up – for 8 hours.
Food poisoning was Guillermo’s initial thought and a friend took him to Sherman Oaks Hospital as his vision was becoming blurry and his pain became unbearable.
Doctors performed a spinal tap and a CT scan and finally provided Guillermo with pain medication. A neurosurgeon reviewed the MRI results and found a good-sized tumor on his pituitary gland. The surgeon also injected dye into his brain to test for an aneurysm.
On January 23, Guillermo was transferred to USC County Hospital and Dr. Marty Weiss and Dr. Ho performed surgery to remove part of the tumor. The doctors were concerned about saving Guillermo’s eyesight and would later determine how to handle the remainder of the tumor.
Following surgery, Guillermo’s left eye had double vision and his right eyelid had closed completely. During his recovery period, he lost 28 pounds in 15 days and he lost most of his strength – He felt like an “old man”.
Guillermo wants to reach out to the Spanish-speaking community and spread a concrete message to seek proper medical health care. He has become an advocate for the Pituitary Network Association and he has been invited to join the Board of Governors of the PNA.
|
In Memoriam: Dr. Julius Goodman
By Robert Knutzen, CEO of the PNA
 The PNA is saddened to announce that one of the United States’ great neurosurgeons, Dr. Julius Goodman, has died. He passed away in January at age 72 after a short illness. He co-founded the Indianapolis Neurosurgical Group in 1970. He was active in neurosurgical education, developing a course to help neurosurgeons prepare for their board exams. The American Association of Neurological Surgeons even named the course after him! Dr. Goodman specialized in pituitary surgery and was one of the pioneers of the transsphenoidal method. He was born in Washington, D.C., and did his studies at Georgetown University. He did an internship in Los Angeles, and his general surgery residency at Vanderbilt University. He trained in neurosurgery at the Indiana University School of Medicine.
Dr. Goodman’s passing inspired great grief among his many former patients. Several posted messages to the message board on his obituary. One patient wrote, “My heart so aches for the loss very many of us are feeling right now…He was probably one of the most giving people I have ever encountered in my life.”
Another patient wrote, “Dr. Goodman will be sorely missed. He was a wonderful man and Doctor. He truly loved medicine and was not only a brilliant doctor but also a very compassionate human being. He operated on my back three times, my brother's twice and removed a pituitary tumor from my father. Through the years he became a cherished friend of the families. Julius Goodman was truly one of the greats.”
PNA Chairman Robert Knutzen said, “Dr. Julius Goodman was one of a small handful of pioneering surgeons who genuinely card about the field of pituitary medicine. Sadly, the same small number is heading for retirement. We are working closely with the next three generations of healers and we hope their work yields the same amount of brilliant results and hope for the millions who need help in order to live.”
Dr. Martin Weiss adds that “Julius Goodman was a dedicated neurosurgeon who espoused the highest ethical and moral principles of our specialty. He was a nationally recognized educator; we are all diminished by his passing.”
Dr. Edward Laws adds, "Julius Goodman was a dear and very special friend, and a consummate leader in pituitary surgery. We first got to know him in 1980 when he helped to initiate the series of meetings that gave rise to the International Society of Pituitary Surgeons. We shared a professional passion for the pituitary and were forever teaching each other and marveling in our mutual fascination. His wit and charm and kindness were unforgettable. Like us, he loved to travel, and we had many happy mutual experiences sharing pituitary knowledge and techniques in wonderful places - Barcelona, Bamberg, Delhi, Agra, Taxco, Malmo, Capri, and Bariloche, to name just some of the highlights. I could always count on him for good advice, and we were on the same wavelength and really enjoyed each other's company. His patients and his students benefited enormously from their experiences with this remarkably gifted surgeon and teacher.
He is in our hearts with a unique and uniquely delightful set of
memories that we will always cherish." |
Book Review: How Doctors Think
How Doctors Think by Jerome Groopman, M.D., (2008), Houghton Mifflin Company, publishers.
By Linda M. Rio, M.A., MFT
PNA Board of Directors
This book provides a helpful insight into the thought process of today’s physicians. For pituitary patients and their family members, I think it is a must-read as a guidepost through the confusing and frustrating maze of modern medicine. Pituitary patients deal with an uphill battle to just get a doctor to listen to their list of seemingly unconnected physical and emotional symptoms. Finally, a doctor - an insider - has written about how important it is for a good physician to listen to the patient. He highlights the importance of the doctor-patient relationship! In an age of managed care by third-party insurance and business executives, it is refreshing to hear that good doctoring still requires the doctor to remember to be a human being.
In spite of advances in technology, Groopman states, “the best way to get that information (about client symptoms) is by establishing rapport with the patient.” He also states that good clinical intuition is “a complex sense that becomes refined over years and years of practice.”
The other benefit of this book is that it also puts patients on alert about their own inability to provide doctors with enough information. Patients, Dr. Groopman states, “should politely but freely broach the issue with their doctor, “I sense that we may not be communicating well.” He also pulls back the veil on the medical profession in several ways. He interviews several other doctors and cites research that talks about misdiagnoses and the reasons for mistakes in medicine. Often misdiagnoses are not due to inaccurate knowledge, but to blocks in the physicians thinking. He cautions doctors to, “not be so ready to match a patient’s symptoms and clinical findings against their mental templates or clinical prototypes…seemingly unusual or atypical presentations often get short shrift.”
He also states that doctors like to be right (don’t we all). “Physicians, like everyone else, display certain psychological characteristics when they act in the face of uncertainty. There is the overconfident mind-set: people convince themselves they are right because they usually are.” Elaborating further on this topic, he says that, “While uncertainty itself imposes a significant burden on physicians”, the greater burden is “the obligation to keep these uncertainties in mind and acknowledge them to patients.” This becomes particularly relevant to pituitary patients because so many have great difficulty in obtaining a proper diagnosis. This book helps, I think, explain some of the reasons for this because pituitary tumors cause such a wide array of symptoms and are often difficult to identify, especially when other diagnoses may appear more readily available. Often, it seems, modern medicine treats the surface symptoms and fails to look further.
“Finding something may be satisfactory, but not finding everything is suboptimal.” Dr. Groopman writes about problems with imaging (MRI, CT etc.) and cites studies on how mistakes happen. He relays many patient stories that I think that anyone who goes to a doctor will find his information enlightening, helpful, and empowering.
|
Message From The Founder:
You Won!
By Robert Knutzen, PNA CEO, Founder
Strangely, I AM PC today. I am gleefully reporting to all of you that the “good guys” finally won one! YOU! Not a complete “over the fence” home-run, perhaps, but at least the patient community scored, whether by the other guy’s error or our own stand-up, heads-down run from third base! And yes, I am talking politics. For those of you in other countries, this is a political year here and every day our senses and intelligence are assaulted by self-important, self anointed politicians.
My message, as always, is about health, even though some of our so-called national leaders are not prepared to leave that to patients and doctors. This time senate bill 877 was the focus of many patients’ and parents’ anger and attention. It had sneakily been introduced over a year ago and was an abomination. Mary Andrews of the Magic Foundation (a non-profit that provides support for families dealing with children with growth disorders) alerted me to the near passage of the bill just a month ago, and led the battle against it. In short, Senators Charles Schumer (D-N.Y.) and Chuck Grassley (R-Iowa) (bipartisan ignorance for once) led a battle to put growth hormone replacement for infants, children and adults on a Schedule III list which would have made it prohibitively difficult to provide GH to those living a great distance from their doctor and a pharmacy. In a “sop” to those of us who protested, they “lowered the bar” to a Schedule IV. Still not understanding the seriousness of the issue, the politicians were finally persuaded by many thousands of parents and patients to get out of our way. And the bill was re-written. ONE year later.
What patients need, they need! The politicians finally decided they had had enough and narrowed their focus to where it should have been in the first place: the unscrupulous coaches and addlebrained athletes who misuse this wonderful medical advance while also including the “look young, feel better” crowd who’ll do anything to look good in a tennis outfit. (This slam is not restricted to one gender.)
With a sincere apology toward anyone left out of the list of people to thank,” I tip my hat to Dr. Alan Rogol, Professor of Pediatrics at University of Virginia and Riley Hospital at the Indiana University School of Medicine, who is also on the Board of the Lawson- Wilkins Pediatric Endocrine Society. The PNA, a rather large patient organization, did not hear one word from the American Medical Association, the American Association of Clinical Endocrinologists, the Pituitary Foundation, the Hormone Foundation or the Endocrine Society. As far as I know, your doctors did not enter the fray on your or your fellow patients’ behalf. If things were left to them, patients would have had a significant setback. This is in line with their weak-kneed approach to testosterone a few years back, allowing at least five states to classify testosterone replacement as a Schedule III, restricted drug. How incredibly ignorant on the part of lawmakers and the medical societies who allowed this to happen. (You don’t outlaw cars just because someone breaks the speed limit—or even kill themselves!) So why mess with our right to health care?
You can read more about this in a recent article in USA today at http://www.usatoday.com/sports/2008-04-15-hgh-bill_N.htm. You can also follow the progress with regular updates on the website of the Magic Foundation at www.magicfoundation.org.
It is very clear that we need an overhaul of the Centers for Disease Control and the National Institutes of Health. They should be available for our lawmakers to confer with, before they make jackasses or elephants of themselves, regarding the approximate number of patients and the severity of the problems. I urge you, everyone - SUPPORT US GENEROUSLY. Nothing, except patients’ organizations, stands between you and total medical disaster. A new organization, called the National Institute of Hormonal Health and Metabolic Disorders must be created ASAP. We urge you to write and call or visit your Representatives and Senators. It must be embarrassing to be a U.S. lawmaker and still have no idea what medical care is all about. They should ask us, the patients instead of listening to themselves "whistling in the dark."
|
|
|
