Fall 2005 Newsletter

See Schedule for upcoming meetings.

PEOPLE, PLACES AND EVENTS

Welcome to the NAMI family:
Martha & John Bulger, Lisa Fluker, Daniel & Pamela Evans, Mike Headd, Christine Muller, Carleen Klauk, Beth Maybee, Joan & Larry Principio

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The new slate of NAMI Board of Directors Officers elected at the May board meeting are:

  • President Judy Watt
  • Vice President Nancy Carlucci
  • Treasurer Don Anderson
  • Secretary Sherlaine Shelley

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NAMI's Annual Dinner

The annual awards dinner was held on April 26th at Mario Via Abruzzi's Restaurant. Judge Patricia Marks spoke about the Mental Health Court Docket that she presides over in Monroe County. The goals of the court are to reduce future criminal activity and lower the high recidivism rates for people with mental illness who become involved in the justice system and also to ensure that people with mental illness and co-occurring substance abuse disorders who are involved in the justice system are connected to effective community based treatments and supports that help to encourage recovery.

Judge Marks was presented with a Special Recognition Award for her dedication and perseverance in making Mental Health Court a reality and also for the success stories that have occurred as a result of people being diverted from incarceration into rehabilitation.

The other recipients of the Special Recognition Award were Lenora Reid-Rose and Neville Morris, directors of the P.A.S.S. ( Prevention, Access, Self-Empowerment and Support), an adolescent program of Monroe and Orleans Counties Special Volunteer recognition award recipients from NAMI were: Jim & Eunice Eckberg, Mary Elle Tomanovich and retiring board president, Mary Robbins. Mary was presented with Silver Ribbon Earrings (the NAMI symbol for hope and ending stigma) for the outstanding job she did as the president for the past three years. The other retiring board member was Aaron Taub, our treasurer for the last six years, who also did an outstanding job in his role. Both of them will remain active as advisors for the board of directors, with the option or being board candidates again after one year off the board. New board members welcomed were: Don Anderson, Rita Cronise, and Claire Perlman.

There were 85 people in attendance, who all enjoyed a wonderful dinner and an exciting and inspiring evening.

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NAMI RECEIVES DONATION OF $2500
NAMI wishes to thank NAMI members, George & Sue Campbell for their very generous donation of $2500 from the Molly Lee Campbell Foundation. This donation will be used to provide support, education and advocacy to individuals and families affected by mental illness.

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VOICES GROUP AT OPERATION FRIENDSHIP
NOW OPEN TO EVERYONE WHO HEARS VOICES AS A SYMPTOM OF THEIR MENTAL ILLNESS! Do you hear voices? You are not alone. Come to the Coalition's peer-run wellness management group. Share experiences and coping skills used in your day-to-day life.

DATES:

  • August 4th and 18th, 2005
  • September 1st and 15th and 29th, 2005
  • October 13th and 27th, 2005
  • November 10th and 24th, 2005
  • December 8th and 22nd, 2005

TIME: 1:00-2:00 PM
LOCATION : OPERATION FRIENDSHIP-160 MOUNT HOPE AVENUE.
FOR MORE INFORMATION CALL THE MENTAL HEALTH COALITION AT 325-3145 X44

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The 4th Annual Jessica Cole Henderson Memorial Lecture
"The Turn of the Tide: A Story of Recovery from Serious Mental Illness"
Presented by
Beth Baxter, MD
With Jane and Richard Baxter

"A Story of Recovery" is a personal account of Dr. Beth Baxter's journey to become a psychiatrist in private practice while recovering from her mental illness. Her experiences serve as an inspiration to those who are themselves recovering from mental illness , ( as well as their families). Please join us as she tells her story. Jane and Richard Baxter will also speak about their experiences as parents and mental health advocates.

Wednesday, October 5, 2004
Rochester Academy of Medicine
1441 East Ave.
Rochester , NY 14604

Hors d'oeuvres Reception: 5:30-6:30 p.m.
Program: 6:30 p.m.

Suggestion donation of $10 per person will allow us to continue offering this annual lecture (No one will be turned away)

The program is sponsored by NAMI Rochester, the Rochester Psychiatric Center, the Mental Health Association, and Jessica Cole Henderson Memorial Fund

Special thanks to Janssen Pharmaceutica Products, L.P., and Friends of Rochester Psychiatric Center for providing financial support

Registration
Checks payable to NAMI Rochester. Return registration to : Mental Health Association, 339 East Ave. Suite 201, Rochester, NY 14604 by September 30th. Call 585 325-3145 by September 10th to request special accommodations.

NAME(s)_______________________________________________________________

Organization ( if applicable)_________________________________________________

Address: ________________________________________________________________

Phone:__________________________________________________________________

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SEEKING PLAINTIFFS!

DO YOU WANT TO DO SOMETHING ABOUT THE INEQUITIES IN PRESCRIPTION DRUG ACCESS FOR DISABLED NEW YORKERS UNDER AGE 65?

ARE YOU ON SSDI AND UNDER 65 AND HAVING TROUBLE PAYING FOR YOUR PRESCRIPTION DRUGS?

If you answered "YES" to these questions, please contact Elizabeth Paul at New Yorkers for Accessible Health Coverage (NYFAHC). She can be reached at 646-4147 OR epaul@cdny.org. NYFAHC is preparing to support a legal action against the State of New York for their unlawful exclusion of people with disabilities from the state's drug assistance program called "EPIC". EPIC currently provides help only to those over age 65, leaving younger disabled people with significant prescription drug needs to fend for themselves NYFAHC thinks that this is unlawful and we are preparing to take the state to court to open EPIC to people with disabilities.

Here is some more information about who would be a good plaintiff.

  • Receiving Social Security Disability Insurance (SSDI) and not receiving benefits from Medicaid.
  • Less than $35,000 if you are single or $50,00 if you are married in total income.
  • You are having trouble paying for your prescription drugs and are willing to publicly talk about your plight. You will need to share your personal information about your situation, including your income, medical condition. Some of this information might be disseminated in the media.

BE A VOICE FOR YOURSELF AND OTHERS AND LET'S FIGHT TOGETHER FOR BETTER DRUG ACCESS FOR PEOPLE WITH DISABILITIES!

(Source: Enews-bounces@naminycmetro.org)

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NAMI SUPPORTS SCREENING CHILDREN AND ADOLESCENTS FOR MENTAL ILLNESSES IN CHILD SERVING AGENCIES AND SETTINGS

NAMI strongly supports Goal 4 of President Bush's New Freedom Commission on mental health calling for early mental health screening. In this nation, approximately 10% of children and adolescents have mental illnesses, yet only 20% of them are identified and receiving services. Mental health screening is essential to address this gross under-identification of youth with mental illness. Research and science are solidly on our side. Research shows that early identification and intervention leads to better outcomes and may lessen long-term disability. It also avoids years of unnecessary suffering.

Screening for the health and well being of children is a well-established practice in this country. We screen for vision, lead poisoning, hearing, scoliosis, tuberculosis, appropriate developmental progress and more. Campaigns of misinformation, stigma and fear must not stand in the way of appropriately identifying youth with mental illnesses and intervening with appropriate services.

NAMI calls on federal, state and local leaders to immediately take affirmative steps to implement mental health screening for children and adolescents, with the following guidelines and protections in place:

  1. Mental health screening must be voluntary and available for children.
  2. Parental consent or consent from legally authorized surrogates must be obtained for all mental health screenings.
  3. Mental health screenings must not be used in a discriminatory manner.
  4. All individuals administering mental health screening must be appropriately trained and qualified both to administer the screening instruments and to interpret the results.
  5. All information related to screening must be kept strictly confidential and the privacy of youth and their families must be protected.
  6. All mental health screening instruments must be shown to be reliable and effective in identifying children in need of further assessment.
  7. Validity studies must be done to ensure that screening instruments are culturally and linguistically appropriate and administered in a manner appropriate for culturally and racially diverse communities.
  8. Schools must never use mental health screening results or the refusal to consent to screening as a basis of any adverse action against a child or family.
  9. All children identified through screening as potentially requiring mental health services must be referred for an immediate comprehensive mental health evaluation by a qualified and trained professional.
  10. Children ultimately identified as requiring mental health services must be immediately linked to and offered appropriate treatment and services and provided with comprehensive information about treatment options, and mental health treatment system, and family and community support resources.

NAMI calls on national leaders to build a comprehensive children's mental health system of care for the millions of children and adolescents who require these services and their families. These families deserve nothing less.

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NEWS OF HEALTH

ADVANCED TECHNOLOGY BRINGS NEW HOPE FOR PEOPLE WITH SCHIZOPHRENIA

(NAPS) - Research has shown that during a two-year period as many as 75 percent of patients with schizophrenia have difficulty taking their oral medication on a regular basis. In fact, missing medications has been cited as a major barrier to treatment success in schizophrenia. The good news is that the U.S. Food and Drug Administration recently approved an injectable, long-acting medication for schizophrenia. For Paul R. of California, treatment with this new prescription medicine has meant getting back on the road to recovery and taking back the independence that was lost when he began suffering from the illness.

At age 44, Paul was diagnosed with schizophrenia and was immediately given oral medication to help manage his symptoms. However, he often skipped taking his medications because it was difficult for him to tolerate. The medication also was a daily reminder of his illness. Because of these lapses is his treatment, Paul 's symptoms kept re-emerging and continued to interfere with his daily life. "After I was diagnosed, I kept working but it was difficult because of the side effects from the medication I was taking," said Paul. "When I started skipping my medication, the symptoms returned and voices became unbearable." Gradually, everything that was normal in Paul's life fell apart.

After his schizophrenia symptoms became so severe that he was fired from his job, Paul and his physician decided he would enroll in a clinical trial for the long-acting injectable anti -psychotic medication Risperdal Consta (risperidone) long-acting injection. Since taking the medication, Paul has been able to gain control of his symptoms and feels the "best" I have in years". How does the medication work? The treatment uses an advanced drug-delivery technology that is given by injection every two weeks to provide consistent medication levels.

The technology works by essentially encapsulating drugs into tiny spheres that break down slowly and release the medication at a controlled rate. The solution is water based, it is easier to inject and patients have reported minimal pain or discomfort upon injection. Charles H. another participant in a clinical study for the medication, saw his life change when he started treatment with it a year ago. "This medication really works for me. I now live on my own, something I wasn't able to do before because of my illness." "Relapse prevention is the cornerstone of the recovery process for a person with schizophrenia. Therefore, the first goal of medication is relapse prevention. Once that's accomplished, you start looking for ways to help people get the most out of their lives," said Peter Weiden, MD a psychiatrist at SUNY Downstate Medical Center in New York. "A long-acting injectable medication is a tool that can help people stop worrying about their medicine on a daily basis and get back to what's important, like friends, family and the goals they've set for themselves." For more information about schizophrenia, visit www.mentalwellness.com.

The accounts above represent unique patient experiences with Risperdal Consta. Individual results with Risperdal Consta may vary.

In clinical trials, Risperdal Consta was generally well tolerated; however, it was associated with certain side effects. Treatment-emergent adverse events with an incidence of 5 percent or greater in at least one of the Risperdal Consta groups (25 mg or 50mg) and at least twice that of placebo were: somnolence, akathisia, parkinsonism, dyspepsia, constipation, dry mouth, fatigue and weight increase. Prescribing should be consistent with the need to minimize the risk of tardive dyskinesia,; if its signs and symptoms appear, discontinuation of Risperdal Consta should be considered. In the integrated database of multiple dose studies the incidence of tardive dyskinesia was 0.6 percent (9/1499 patients).

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MENTAL ILLNESS - RELATIVELY SPEAKING

When our children are born we see them as miracles, little bundles of life for which all things are possible. We have dreams for them, sometimes hoping they can the things we have not been able to do in life, sometime imagining them going on to do great things in the world, and always imagining them as being successful not matter what they attempt.

We don't' think about the difficulties they will face, imagining we can protect them from the troubles we have faced in our own lives. We forget that we have gained our emotional strength from learning to deal with the adversities life had in store for all of us. We imagine our children will be exempt from hard times. We become angry and defensive at the thought that we might not be able to protect our children from harm.

Somehow it is easier to accept physical injury or illness in our children that mental problems. It still upsets us, angers and disappoints us, but somehow we can come to accept it. But what happens when people we love, our children in particular, turn out to be mentally ill. I think most of us try to see it as a stage, something they are going through which will soon be over so everyone can get back to normal. Sometimes we are right and everyone relaxes.

Sometimes what we thought was temporary lingers or gets worse. We are faced with accepting that it is not a phase but the way our child will be for the foreseeable future. I don't know if it matters whether your child is five, sixteen or thirty. Knowledge that they are in the grips of mental illness is devastating. The dreams they had, or which we had for them, seem out the window. Talents they seem to have left them and even a logical conversation may not be possible anymore.

What can we do as parents? No matter what happens, it is most important to let our children know we still love them, no matter how bad things get. Sometimes it may seem that they don't even understand what we are saying, but later, when things settle down, they will remember our reminders that we love them.

We can help our children rebuild their lives, and understand how hard it must be for them to do that. I remember casually suggesting to my son that he take a bus to where he needed to be, never realizing he was terrified of traveling with strangers then, even though he was able to live out of state on his own before being mentally ill.

Another thing we can do is listen. They may ramble and make little sense to us at times. But being there and showing an interest in them keeps a connection to reality and to society open even if they are not ready to use it at the time.

What can we do for ourselves? We can remind ourselves that our children's mental illness is not our fault and is not theirs. We had no intention to make our even allow them to be mentally ill. Nor did they choose to become mentally ill or to stay that way.

Feeling grief, similar to losing a loved one through death is not unusual. We go through the same stages of denial. anger, despair and hopefully resignation and acceptance. Find someone, a relative, friend, or counselor to listen to you and help you through the confusion of these feelings and learn to accept yourself and your child as you both are.

What about the future? Sometimes our children do pass through mental illness and come out the other side strengthened and fortified to take on life as they never could before. Sometimes we have to change our sights and let our children find goals they can reach in their present condition, no matter how limited they may seem to us at the time.

We do not create people and cannot know ahead of time the life purpose of our children. There is already a God in place for that. All we can do is accept our children as doing the best they can and living whatever life they are handed. This is the best we can do for them and for ourselves.

(Source: Joseph G. Langen)

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ANTIDEPRESSANTS CAN LEAD TO TOOTH, GUM DISEASE

The U.S. Academy of General Dentistry (AGD) has warned that people receiving medication for the treatment of mood disorders are at greater risk of tooth and gum disease. Up to 37 percent of adults experience mood disorders at some point in their lives, and many receiving treatments may undergo adverse dental side effects according to a study that appears in the September/October 2004 issue of General Dentistry, the AGD's clinical peer reviewed journal.

Mood disorders are a group of mental conditions, including depression and bipolar disorder, which are common among adults. Early diagnosis and treatment can greatly reduce the risk of suicide. The AGD said medications prescribed as treatments for mood disorders can result in dry mouth (xerostomia), an increased rate of dental cavities and periodontal (gum) disease. "Many patients who are taking antidepressants will have dry mouth," said AGD spokesman David F. Halpern. "In an effort to curtail any tooth decay, we stress with patients the importance of maintaining an extremely high level of oral hygiene care by brushing, flossing and daily fluoride therapy."

Dry mouth can be treated by sipping water during the day and chewing sugarless gum. Halpern also suggest artificial saliva substitutes such as gels, liquids or sprays. Individuals with dry mouth should contact a dentist for an evaluation.

(Source: NAMI-PROMISE Newsletter)

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KAREN A. CAVALIERI- POWERFUL ADVOCATE & BELOVED FRIEND

It is with great sorrow that we announce and acknowledge the death of Karen Cavalieri. Karen has been an inspirational and powerful advocate as well as a beloved friend to many people in the Rochester community and throughout New York State.

The following paragraphs were supplied from comments made about Karen and her life by people who were close to her. Though it would be impossible to tell all of Karen's story in this article, we tried to paint a picture of the essence of her life and spirit. As you read on, do not dwell on the sadness of this loss, but instead on the blessings that Karen has bestowed on every life she has touched, and in your mind celebrate her life and good nature.

Throughout her life, Karen was a strong and capable woman. Her advocacy efforts ranged from advocating for women's rights to running support groups for her peers recovering from mental illness. Karen had a kind, gentle nature but was not afraid to speak her mind. Though her road was not always easy, Karen showed strength and good spirit in all that she worked to achieve.

At the Mental Health Coalition, Karen served for six years as a member of the Board of Directors, serving two years of that term as Board Chairperson. Toward the end of her service as a board member, Karen began developing and starting up a support group for people who hear voices as symptom of their mental illness. This is know today in the Rochester community as the "Voices Group". The Voices Group provides group members with support and sharing opportunities in a safe and consistent environment.

Karen was also a giver. She was not wealthy, nor did she have excessive possessions, but she gave what she could, whether it was time, money, or a listening ear, without hesitation. Nowhere is this point made clearer than by noting that, on a fixed, modest income, Karen not only gave to friends, neighbors, and churches, she also had several "foster children" who she financially supported through the "Save the Children Foundation" which provided them with food, clothing and education.

In this way, Karen exemplified the idea that no matter how much or little money or other resources you have you always have enough to give to someone else. Her life was almost completely devoted to the service and care of others.

If she was not directly giving to others, Karen was helping to organize, support, direct (through service as a board member) or raise funds for the various organizations to which she belonged. One particular example, for which she will always be remembered is her effort in fund raising for the annual NAMI (National Alliance for the Mentally Ill) Duck Race.

Education was important to Karen. She enjoyed speaking at conferences, mental health programs, colleges and workshops about what it is like living with a mental illness. Doing this helped open the lines of communication for others who live with an illness to talk about their struggles and share coping and recovery strategies with each other, without feeling embarrassment or shame.

Just before Karen passed, she was planning to begin expanding the Voices Group wellness management model at the request of other counties' mental health facilities. Because of Karen's reliability, we knew she would have seen the project through. That is why her fellow Voices Group members are working to ensure that the voices group already established at Operation Friendship stays strong and continues to do well under new and capable leadership. They also hope that one day, in the not too far future, Karen's goal of expanding this support system will be realized through the work of other caring people.

Karen touched many lives. She was not merely a woman who lived with a mental illness… she was a strong woman who beat the odds, broke through the stigma and helped others to achieve real living through support, open mindedness and persistence. We will remember her in our hearts and in our efforts forever.

(Source: Erica Damanski, Program Director- Mental Health Coalition)

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SIBLINGS RESEARCH STUDY
DID YOU EVER THINK PARTICIPATING IN A RESEARCH STUDY WOULD BE FUN?

It must have been three or four years ago when I saw a notice in a NAMI newsletter about a genetic research study. Since there are five girls in my family and only one is affected by Schizophrenia, I thought studying the five of us would give us a lot of information about what made one of us different. We all agreed we wanted to participate and did all the necessary applications. The study is "A Neurobiological Investigation of Patients with Schizophrenia Spectrum Disorder and Their Siblings".

I am proud that my sister Kristine, was so willing to participate in this important research. I got the call asking if the two of us who live in Rochester would like to schedule our participation and a month later we were on our way to Bethesda, MD. We talked about it being a paid vacation for us and looked forward to a chance to just get away. Every detail of our trip was arranged for us and we were sent instructions ahead of time so we knew how to prepare and what to expect during our visit. Our adventure began when we flew out of Rochester on a Sunday afternoon and then spent all day Monday at the facility and part of Tuesday testing and then flew home later that evening. The NIMH (National Institute of Mental Health) is a very impressive facility with tight security just to get on the premises.

We were both admitted as outpatients and the FUN began. We were escorted at all times by a staff member. Usually we were not together because our tests had to be scheduled at different times. We did MRI and MEG (studies Magnetic fields produced by brain activity ) tests. While in both these machines we had to perform various tasks while they were watching our brain activity. Pretty exciting stuff for us two vacationers. We had hours of neuropsychological testing, a clinical interview, neurological exam and lots of blood drawn.

The next day went so fast and we were so fully booked that we were given a bag breakfast and later a lunch to eat whenever we could find a few minutes. We would run into each other every so often and we were both excited about our day and what we were doing. .. Since the work we were doing was tiring we were each given consideration regarding our ability to perform tasks some of which did not get completed. Sunday and Monday evenings we were on our own for dinner so we had a chance to explore Bethesda which is a very inviting neighborhood.

We stayed in a hotel just a couple miles from the NIMH and were treated like VIP's from the time we stepped off the plane and a driver was there waiting to take us to our hotel. The purpose of the study is to better understand the biology of the disease and the genetic aspects of schizophrenia. A major focus of the study is to identify genes that may increase the risk of developing schizophrenia. Our blood samples will be stored by the government for future research projects as well.

We are both interested in participating in studies in the future and we were very impressed by the research and the staff at NIMH. Any questions please feel free to contact me at kphrochny@juno.com The number for information on this study is 1888-674-6464 and the web site for information on the other studies is www.cc.nih.gov

( Source: Kathy Hirsch, NAMI Member)

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THE LIVING ROOM

The Spiritus Christi Mental Health Center is proud to announce the opening of The Living Room, a recovery and wellness community-offering peer counseling and planning to individuals experiencing intense feelings and problems in living.

The Living Room is run by volunteers who have been seriously affected by past trauma, loss, and crises, yet who have experienced strength , hope and personal transformation through mutually beneficial peer relationships.

In The Living Room, there are not doctors, therapists or medical experts. More importantly, there are no patients. Participants are simply members of a free, safe, non-judgmental community where caring is offered and received and relationships are built on mutuality, shared power and respect.

In The Living Room, we believe that trauma, loss and crises, which may include verbal, physical and sexual violence in our past, contribute to problems in living. We care deeply about what happened to each other and we strive to understand each other's lived experience.

In The Living Room , peers know that we can and do get well and we share an absolute belief in the recovery of everyone.

Come join in our community. All are welcome in this informal, comfortable, confidential loving place.

For hours of operation please contact: The Spiritus Christi Mental Health Center
121 North Fitzhugh Street
Rochester, New York 14614
325- 1180 ext. 114

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DEPRESSION TREATMENT DEVICE SPARKS DEBATE

May 31, 2005

HOUSTON (AP)-- A tiny device about the size of a pocketwatch has treated hundreds of depression patients in clinical trials across the country. It's on the verge of being the first depression treatment device to be approved by the U.S. Food and Drug Administration.


But the progress comes amid questions about whether the device's Houston-based manufacturer, Cyberonics Inc., has sufficiently proven that it's safe and it works.
At age 3, Karmen McGuffee would spend sleepless nights worried about whether her little sister was still breathing. It wasn't until her late teens, after her mother found her on the floor in a fetal position, bleeding from self-inflicted deep scratches, that she was diagnosed with severe depression.


"Medications would work for six months to a year. Then (doctors) would have to start all over or add another one or decrease one. That roller coaster went on from 19 until I was 28," said McGuffee, now a 34 year old mother who lives in the Dallas suburb of Garland. The Vagus Nerve Stimulator finally helped McGuffee said.


The stimulator, which weighs less than an ounce, is similar to a pacemaker, delivering mild electrical pulses for 30 seconds every 5 minutes to the Vagus nerve, a long nerve in the neck that carries information to many areas of the brain that control mood, sleep and other functions.


Cyberonics originally spent 10 years and $70 million developing the device as a therapy for epilepsy, gaining FDA approval in July 1997. The company later learned that stimulating the Vagus nerve also helped relieve depression.


Nearly 19 million American adults suffer from depression, according to the National Institute of Mental Health. Nearly 10 million of these adults experience major depression, which is often resistant to treatments such as psychotherapy, medications and shock therapy.


The stimulator is implanted under the skin on the left side of a patient's chest. Another small incision is made in the neck to wrap small wires from it around the Vagus nerve. The implant and surgery costs about $20,000. Side effects can include voice alteration, scratchy throat, cough and shortness of breath.


"The effectiveness of the treatment improves over time and the nuisance side effects associated with the therapy decline over time, opposite most antidepressants," "Cyberonics CEO Robert Cummins said.

Although the device gave her a gravely voice that quivers, Marna Davenport, a 51 year old college instructor for Columbia, S.C. had tried about 30 different kinds of medication combinations since she was 22, as well as shock treatment, but nothing worked. "It sort of robbed me of all the color in my life she said of her depression. "I felt that one day it would kill me."


Davenport got the device in January 2001, but didn't feel the full effect until 18 months later. She now considers herself the "Happiest girl you ever met," but still takes antidepressants, eats well and exercises to control her depression. Davenport said she looks forward to final FDA approval for the device so others can benefit.
In June 2004, an FDA advisory panel voted 5-2 to recommend approval for patients with major depression. But six of the seven panel members were concerned about Cyberonics' two main studies on the device in which the patients were not randomly assigned to receive the treatment or a placebo. Random assignments prevent those conducting the study from manipulating who gets the treatment and who gets a placebo.


Cummins said the studies were conducted thoroughly enough to prove the treatment effective.


Richard Malone, a professor of psychiatry at Drexel University in Philadelphia and one of the two FDA panel members who opposed the device's approval, criticized Cyberonics for not doing a true double-blind study, where neither the doctor nor patient knows if they are getting treatment for a placebo.


"For most drugs, if your don't show efficacy in double blind studies, you haven't shown that it's effective." Malone said.

The FDA went against its panel's recommendation and decided in August not to approve the device, saying it was concerned about the quality of the studies and that some patients' depression worsened even with the device. When Cyberonics gave the FDA more data showing that 18 percent of patients were depression free, 35 percent had reduced depressive symptoms by half and 57 percent had some benefit after two years of treatment, the FDA gave the stimulator preliminary approval in February.

Final approval was expected by the end of May but continuing debate could delay that. On May 11, the consumer group Public Citizen wrote the FDA, opposing the approval of the device because it "does not come close to meeting FDA's approval standards, and may well do more harm than good." Cyberonics said the Senate Finance Committee was also examining the FDA's handling of the device's approval process. FDA spokeswoman Kathleen K. Quinn declined comment because the device's application is pending and a committee spokeswoman did not return a call seeking comment. Final FDA approval could mean $1 billion in revenue by 2010, compared to $300 million in revenue for the device's treatment of epilepsy, Cyberonics predicts.

The company's stock price has also dramatically risen and fallen during the approval process. The stock fell 27 cents on Friday to close at $37.51. It has traded in a range between $12.78 and $46.71 over the last year.

John O'Reardon, an assistant professor of psychiatry at the University of Pennsylvania, said he would use it with patients. "It's had a rocky road to approval," he said. "I would say it probably does mean there is some question mark, but there is always some question mark when a new treatment is approved."
(Copyright 2005 The Associated Press.)

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MEDICAID BUY-IN PLAN SLOWLY CATCHING ON
By Tim Logan Middletown Times Herald-Record November 14, 2004

The name makes it sound like a bureaucratic nightmare. But for people like Angel Buffalino, it's been a lifeline. When Buffalino lost her health insurance earlier this year, the medical bills piled up fast. Living with multiple sclerosis can do that. So she enrolled in the Medicaid Buy-In Program for People with Disabilities, an 18-month-old state program to help disabled New Yorkers juggle a job and high health insurance costs. For years, many people with disabilities who wanted jobs were stuck, said Doug Hovey, executive director of Independent Living, a Newburgh advocacy group for people with disabilities. They would earn too much to qualify for Medicaid. But without the comprehensive state insurance, they couldn't afford needed medical care. "What good is it to go to work if, when I make $15,000 or $16,000, I lose my medical care?" Hovey said. So he and other advocates pushed for the buy-in program.

Last summer, it finally took effect. But implementation has been slow. Only about 2,000 people have signed up so far. According to the state Health Department. There's room for 20,000. In recent months, the state has made more of an effort on training and outreach, and word is starting to spread among social workers who help people with disabilities. But for some, like Buffalino, it's already made a big difference. She works with other people with disabilities, as a recreation coordinator at Action Toward Independence, and she'd campaigned for the by-in's passage. But her job came with good insurance, and she never thought she'd need it herself. Then budget curs hit, and Buffalino's hours were cut back. The bills piled up, and her Social Security disability application was taking it sweet time moving through the bureaucracy. So she applied for the buy-in. "This is an absolute necessity. It's a lifeline," she said. "Without insurance, just the bills I've had in the last month would send me into bankruptcy." She's one of 62 Orange County residents in the program so far, said Anna Finkel, chief Medicaid examiner for the county Department of Social Services. Many more will qualify, she said, and county social workers are putting out the word.


Previously, people who made more than $659 a month, couldn't get Medicaid unless health care costs made them "spend down" to that level, she said. Now if they qualify for the buy-in, people can make as much as $1,940 a month. And, for now, the "buy-in is actually free, though state officials plan to start charging for it in the future. That keeps people with disabilities from making the difficult choice between a job and health care, Hovey said. For Buffalino, it meant she could stay healthy enough to keep working. Medicaid covers a lot of routine medical expenses that, without insurance, she would have to skip.


"Without this, " she said, "I would probably be a very sick person right now,"

(Source: Middletown Times Herald)

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PERSONALITY DISORDERS IMPROVE NATURALLY

The features of personality disorders show considerable change over time, with many people improving at a steady rate, U.S. researchers have found. For a long time it has been assumed that personality disorders are "trait-like, enduring, and stable over time," note Mark Lenzenweger (State University of New York at Binghamton) and colleagues. To investigate whether or not this is the case, the researchers analyzed date for 250 participants of the Longitudinal Study of Personality Disorders (LSPD), which consisted of 2000 first -year undergraduate students grouped according to whether they had a possible personality disorder or no personality disorder. Over the 4-year study, the participants were examined for personality disorder features at three different time points, using the Internal Personal Disorders Examination. The team found clear evidence of statistically significant individual change in almost all of the personality disorder dimensions studied over time, and this change was typically and uniformly in the direction of decreasing symptoms over time.


Each personality disorder typically consisted of around eight or nine symptoms, Lenzenweger et al report, and, on average, people lost 1.4 symptoms of their personality disorder each year, or more than five symptoms over five years. "In sum, personality disorder features do not appear to be as inflexible and enduring as that suggested by the DSM criteria," they write in the Archives of General Psychiatry. They stress. However, that, while personality disorders may improve gradually over time, regardless of whether patients receive treatment, therapy is still important. Study of the LSPD participants continues and, with a further two assessments planned, Lenzenweger and team hope to "shed further light on this fascinating issue and …provide a more refined appreciation of the natural history of personality disorders."


(Source: Psychiatry Matters)

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REMEMBER GARDEN

HISTORY
In 1984, an unmarked mass grave was discovered at Highland Park. Those buried there died over a century ago while institutionalized at the Monroe County Insane Asylum, Almshouse and Penitentiary. At that time, large institutions were created and populated by individuals who had discernible differences such as mental illness or mental retardation, along with people who had cerebral palsy and seizure disorders, among others. No records were kept of the individuals buried at the site. Currently, there is a plaque recognizing the gravesite.

HONORING THOSE WHO WERE ONCE FORGOTTEN
A Proposal to create a living memorial to those buried in Highland Park has been approved and resoundingly supported by Monroe County Legislators. The garden would appropriately mark the grave, lending dignity and respect to those buried there, while heightening community awareness to the site and the history of institutionalization. The garden would be a living monument to the strides that have been made to remove the stigma that once surrounded mental illness and developmental disabilities. It would also serve as a place of active rehabilitation where individuals with a mental illness or developmental disability would work alongside professionals, family members and volunteers to maintain the garden.

THE DESIGN
The plantings will be predominately purple, reflecting the official color of Mental Health Awareness. Pinks and blues will also be part of the scheme that will include trees, shrubs, perennials and annuals. Lilacs and foliage with bold autumn colors will provide multi-seasonal interest.

CREATING A LIVING HEADSTONE MEMORIAL
A community effort to create a living memorial garden is underway. Volunteers will assist with development, building, planting, and maintenance of the garden. You are invited to be a part of this important project with a financial gift, donation of a professional service or a gift in kind, or by contributing time to maintaining the garden once it is planted.

NAMI Rochester's Memorial fund in honor of John J. Cleary is donating $900 for the purchase of a bench for the garden. It will be engraved to read: Donated by NAMI Rochester, ( The National Alliance for the Mentally Ill) in memory of John J. Cleary. NAMI wishes to thank the family of John Cleary for their decision to designate the memorial fund to be used for this living memorial in Highland Park. John Cleary was the beloved father of NAMI program director, Pat Sine.

Checks or money orders can be made out to the Vincent DePaul Foundation/Remember Garden and can be mailed to: 1931 Buffalo Road, Rochester, New York 14624. For more information, please contact, Dale Hampton, Project Coordinator at 426-8000 X 3090. Donations are tax deductible as permitted by law.

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KENDRA'S LAW- BACK AND BETTER

Kendra'a Law is due to expire on Thursday, but it will not. The Governor has worked out a deal with the Senate and Assembly leadership that will extend the program for 5 more years. The legislation embodying the agreement passed the legislature by margins that are a resounding affirmation of assisted outpatient treatment's capability to help those in New York who are most affected by severe mental illnesses. The measure was endorsed in the Senate 60-0 and 144-1 in the Assembly. All that is now needed in the signature of Governor Pataki, which we will get. You will see that from his press release, which is the first item below.

And Kendra's Law has not just been renewed; it has also been improved. Relying on the more than five years of experience with the program, the parties agreed to more than a dozen modifications to the law. Almost all of them will heighten its performance; not one of them will detract from it.

These enhancements will encourage counties to make greater use of assisted outpatient treatment (AOT), create new the classes of authorized petitioners, somewhat expand the eligibility criteria for the program, explicitly permit the enforcement of an AOT order outside the issuing county, and create a judicial education program that will teach judges and their staffs to more effectively administer the law. He never voted on the bill and his signature won't appear on it but Eliot Spitzer has watched over the program he crafted the original legislation for in 1999; he and his staff proposed most of these improvements.
What we did not get was a permanent law. The key negotiators for both the Senate and Assembly insisted on renewal. Governor Pataki and OMH were strongly for permanency but his leverage in the negotiations was severely limited because all knew that he would never veto a bill to renew the program that he has championed.
In total, that means, that Kendra's Law remains and it is now better- but it also means that we will have to defend her again in the future. And we will have to be ready.

The AOT program is designed to protect the public and individuals with mental illness by ensuring that individuals with a mental illness and a history of hospitalizatons or violence are safely and effectively treated in community -based services appropriate to their needs. The law also ensures that local mental health systems give these individuals priority access to case management and other services necessary to ensure safe and successful community living.


From the program's 1999 implementation through june1, 2005 over 7,000 new yorkers with serious mental illness have received enhanced services and follow up care to ensure complaince with treatment and a safe opportunity for recovery.
The agreement reached today extends the expiration date from the original kendra's law for another five years, strenghtens the aot program's oversight by requiring an annual submission of program data, and will allow an external research organization to evaluate the program's implementation and effectiveness. It also makes the petition process more family friendly.


In addition to aot, kendra's law addressed the need to ensure that people with mental illness, who are moving from hospitals or correctional facilities to the community receive necessary psychiatric medications and other needed services without interruption. The law's statewide medication grant program enables counties to provide people who are discharged from psychiatric hospitals, state prisons or county jails with psychiatric medication they may need while they are applying for medicaid.

NOTE: Jeff Keller, Deputy Director of NAMI/NYS will be coming to Rochester in the Fall to do a presentation on Kendra's Law.

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ACT NOW! CONTACT YOUR CONGRESSMEN IN WASHINGTON TODAY !!
FROM NAMI-NYS E NEWS, JULY 25, 2005

The U.S. House of Representatives is scheduled to consider the Association Health Plan bill (HR 525).Among other things, this bill in its present form would super-cede and NULLIFY all mental health parity laws in the 35 states that have them and render our efforts to get Timothy's Law passed null and void. Call your congressman/woman today and give the following message: OPPOSE HR 525. However, if it appears likely to pass, please SUPPORT the Holt Amendment that would make the law subject to state mental health parity laws.


The bill would vastly expand multi-employer Association Health Plans (AHPs) and undermine existing state laws that require health plans to cover treatment for mental illness on the same terms and conditions as all other illnesses-commonly referred to as parity. This proposal (HR 525) would significantly expand the scope of a federal law ( known as ERISA), that exempts self-insured employer health plans for their workers (and their families) to switch away from coverage that meets a parity standard, i.e. plans that cover mental illnesses the same as all other illnesses.


The AHPs envisioned by HR 525 would be exempt from all state insurance laws, including: state parity laws, minimum coverage standards for mental illness treatment and other consumer protections. The supporters of AHPs assert that HR 525 would help make employer coverage more affordable and ease the growth among the uninsured. However, several recent studies have found that AHPs are not effective in reaching uninsured workers and their families and are more likely to fail as a result of being insolvent. It is expected that during consideration of HR 525, Representative Rush Holt (D-NJ) will be offering an amendment to require AHPs to comply with relevant state mental illness insurance parity laws. NAMI strongly supports the Holt Amendment as an important and badly needed improvement to HR 525.

 

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