May 2001

A record-setting 303 participants came together April 20 and 21 for the NAMI North Carolina Spring Conference in Research Triangle Park, and found what one member called "a top-notch conference with something for everybody."

Dr. Jeffrey Lieberman, Eure Distinguished Professor in the UNC-Chapel Hill Department of Psychiatry, began with a plenary on "Advances in the Treatment of Psychotic Disorders." After reviewing the development of first-generation and second-generation antipsychotic medications, Dr. Lieberman outlined the important CATIE (Clinical Antipsychotic Trials of Intervention Effectiveness) project, which he and his team at Chapel Hill have begun. This will include 1800 participants in 30 states, and will evaluate the medications’ "real world" effectiveness through clinical trials. (Additional information on the CATIE project is available at www.catie.unc.edu.) An evaluation form declared that "Dr. Lieberman’s presentation was the best I’ve heard since I began attending such meetings in about 1986 or ’87."

Enthusiastic evaluations also poured in for the plenary by Dr. Xavier Amador, Professor of Psychology at the Columbia University College of Physicians & Surgeons. Author of the new book, I Am Not Sick, I Don’t Need Help, Dr. Amador outlined his research into a condition he calls "anosognosia" – an inability to perceive one’s own neurological impairment. Dr. Amador began researching this syndrome when he observed the similarities between neurological patients, including those with paralysis, and his own brother, who has schizophrenia. "It was great!" one evaluation of this plenary commented; another scored it a 5 on a scale of 1 to 4.

Dr. Jean Frazier, M.D., Director of the Child Outpatient Program at McLean Hospital and Assistant Professor of Psychiatry at Harvard, reviewed her work on "Pediatric Bipolar Disorder." Participants warmed to Dr. Frazier’s understanding of children, her insight into the difficulties of accurately diagnosing mental illnesses in them, and her candid concern over the current lack of research on the long-term effects of various treatments. "I would love to have another workshop with Dr. Frazier," baa participant commented, and 55 people signed up to receive additional information on her session.

"Excellent Awards Luncheon," a participant wrote: "can tell NAMI NC is serious, passionate and competent." We were updated by Lanier Cansler, the new Deputy Secretary of the N.C. Department of Health and Human Services, and Rep. Martha Alexander, who was enlisting help in the battle to bring a Parity bill to a vote in the General Assembly. As usual, we were touched by the achievements of those who won our awards (listed on page 2), and by their moving acceptances.

A dozen workshops on a wide variety of topics also received high marks. "Everything was great," an evaluation read, "I kept wanting them to talk more." A professional attending a NAMI conference for the first time described it as "excellent," and went on to say, "I learned so much and have such a better insight [into] what families and the people with mental illnesses go through, experience, and need from me. I will be an annual attendee! Thanks." And our thanks to the Educational Committee of the Board, our host – NAMI Wake County – and the staff. "Congratulations on a job well done."

Many NAMI North Carolina members have called in alarm about reductions in services they or their family members have experienced over the last year. Now there are some real numbers to confirm that experience.

A survey jointly conducted by the NC Council of Community Programs (the association of Area MH/DD/SA programs) and the Coalition for Persons Disabled by Mental Illness, of which NAMI North Carolina is a member, reveals dramatic reductions in services across the state for children and adults.

Of the programs responding (72%), all indicated that they could not provide or had stopped providing at least one child service during the past year.

Hardest hit were child assertive community treatment teams (ACTT) with 68% of the responding programs indicating they could not provide or had stopped providing this service. Child psychosocial rehab services and partial hospital/day treatment services also were reduced or unable to be offered (46% and 43% respectively).

All those programs responding blamed insufficient state and Medicaid funding for service unavailability. 36% reported reducing child services because funding was needed for other service priorities (mainly crisis and outpatient services).

The news isn't much better on the adult services side. With 69% of area programs responding, all reported they could not provide or had stopped providing at least one adult service. Services hardest hit were adult ACCT services (81%), adult respite care (63%), adult residential services (41%), and adult partial hospital and day treatment services (30%).

All reporting programs cited insufficient state and Medicaid funding for the service reductions or inability to offer the service. "The results of this survey are frightening," said Beth Melcher, NAMI North Carolina Director of Government Relations. "We are going backward despite all the talk of improving community care and responding to the U.S. Supreme Court Olmstead decision. People are suffering even more."

As the legislature begins to debate the state budget, results of the survey must be brought to legislators' attention. "Our state legislators are ultimately responsible for this situation," said Melcher, "and we must hold them accountable for the suffering being placed on individuals with mental illness and their families."

For a copy of the survey results call the NAMI North Carolina office or go to the CPDMI web site at www.cpdmi.org

Introducing Myself as Your New President, Donald L. Clark, Ed.D.

By Donald L. Clark, Ed.D.

While on the road one day, I received a call. My wife said, "The Governor"s office will be calling you and you are going to want to say yes." A few minutes later the call came.

"The Governor wants to ask you to serve on the Commission of Mental Health, Developmental Disabilities and Substance Abuse Services," the person said.

Not even knowing that the Commission was the important rule making body for the entire system, I told him I would be happy to. I try to follow my wife's advice, you see.

Unhappily, when the next governor was elected, out I went. To the victor go the spoils. However, the Secretary of Human Resources did ask me to move over to the Mental Health Planning Council, the overseers of the Federal Block Grant money. There, I met my first NAMI consumer members, and they stirred me up.

So with some other eager advocates back home, I helped start NAMI High Country, the first affiliate in our part of the world. Next I asked the state NAMI president to appoint me to the state board and later, you elected me. Meanwhile, some of my fellow church members won seats on our County Commission, so the day they won, I asked them to appoint me to our local Area MH/DD/SAS Board. Knowing my experience, they did.

Why tell you all this? Well, besides being a family member and an occasional consumer, I wanted you to know me a little better. More important, for those who desire to be of service, I wanted to share with you how one person did it.. The secret is that you let people know you want to help. If you know a candidate for office who wins, or someone who contributed to the victory, you let them know you are interested. And, when someone asks you to serve, you say "yes."

Finally, if all that fails, with our help, just start your own affiliate where there isn’t one.

The Common Sense Foundation recently released a major new report on the mental health system entitled "The Unhealthy State of Our Mental Health."

The report is a comprehensive look at the state's mental health system written by mental health professionals, advocates, and consumers. It is an excellent tool for NAMI North Carolina members to educate themselves, legislators, and policy makers.

While the report confirms the lack of adequate funding for the system, it also points an accusing finger at state leadership. The report's author, Jane Stein said, "There is no excuse for the current state of our mental health system. If the state of North Carolina does not take responsibility for improving it, no one will...unless our governor and our Secretary of the Department of Health and Human Services make the reform of the mental health system a top priority, we will fail in on of the major responsibilities that our state has."

To receive a copy of the report, contact the Common Sense Foundation at (919) 821-9270 or the NAMI North Carolina state office.

A sincere "thank you" to the NAMI North Carolina Board of Directors members who rotated off the Board this spring.

Barbara Nettles-Carlson, Greg DeMello, and George Kerns have provided effective leadership during their tenures on the Board, working to strengthen NAMI North Carolina and its affiliates.

We are very grateful for their service!

NAMI North Carolina has elected the following members to serve three-year terms on the Board of Directors:

Sarah Boyd of NAMI Rowan County;
Nancy Carey of NAMI Western Carolina;
Dorothea Harrison of NAMI Iredell County;
Martha Higginbotham of NAMI Forsyth County; and
Linda Howell, also of NAMI Western Carolina.

Welcome aboard to these newly-elected Board members!

All members of the Board will be attending the annual retreat in June to plan for NAMI North Carolina’s coming year.

NAMI North Carolina affiliate members also voted to accept the proposed Bylaws change as presented.

NAMI North Carolina Awards Recipients

Congratulations to NAMI North Carolina’s 2001 award winners, who were honored at the recent Spring Conference.

Sen. Stephen M. Metcalf, Asheville
Rep. Verla C. Insko, Chapel Hill

Advocate of the Year:

Rev. Stephen P. Lorimer, Charlotte

The John Baggett Award:

Hon. Ralph Campbell, Jr., Raleigh

The Mental Health Professional(s) of the Year:

Sarah Cameron, Durham
Karen Kincaid Dunn, Carrboro

The President's Award:

Grace Kelley, Charlotte

The Lifetime Achievement Award:

Paul and Marcia Garatt, Concord

Beth Greb Says Good-Bye and Hello

Beth Greb, long-time NAMI Wake and NAMI North Carolina stalwart, resigned her employment as our Adult Services Coordinator in mid-April. Beth had been on the staff for about five years, and was an important leader in helping NAMI North Carolina grow through developing local affiliates and expanding the Family-to-Family education and support program.

Many local affiliate leaders have benefited from Beth’s expertise. Over her tenure here she created and presented affiliate workshops for over 200 people in North Carolina, plus the national NAMI regional coordinators and leaders from other states.

Beth developed a President’s Manual for local affiliates, which evolved into our Affiliate Tool Kit—a step-by-step manual for beginning and growing a local affiliate. Shepherded by Beth and by Matisha Brown, the Family-to-Family program has expanded from a handful of teachers to almost 150 teachers in over 30 locations; we have now offered the course 100 times across North Carolina.

Beth says, "It has been the greatest privilege of my life to work for NAMI North Carolina people. I was approaching 50 and hadn’t had a job in 27 years. NAMI gave me employment, computer literacy and about a thousand wonderful friends. Thanks!"

The good news is that Beth will remain involved with NAMI! In addition to orienting her successor (now being recruited), she has offered her services on an independent contractor basis—an offer our Executive Director was very glad to get and will be quick to accept as the need arises.

So—not "good bye" but "change."

And a good occasion to say a heartfelt thank you!, Beth!

Here are some informational web site resources that may of value to families of young children.

www.aboutourkids.org - New York University Child Study Center site features major mental illnesses in children, symptoms, treatment, reading list, Q&A, stories.

www.aacap.org - The American Academy of Child and Adolescent Psychiatry site with information on child and adolescent psychiatry, current research, practice guidelines, managed care.

www.bipolarchild.com - Site features Demitri Papolos, M.D and Janice Papolos, authors of The Bipolar Child and Overcoming Depression. Includes general information on early-onset bipolar disorder, a model IEP (Individual Education Plan) for a bipolar child, free online newsletter.

www.bpkids.org - A "virtual community center" with an extensive library, message boards, chat rooms, "Ask the Expert" feature, gallery of children's art, and more by the Child and Adolescent Bipolar Foundation.

www.childspirit.com - From George Lynn, author of "Survival Strategies for Parenting Children with Bipolar Disorder" and "Survival Strategies for Parenting Children with ADD." George is a wellness trainer and psychotherapist working with adults and children with neuropsychological challenges. He is also the parent of a son with Tourette Syndrome and Asperger's.

www.ncchild.org/covhome.htm - Become a "cyberlobbyist" for kids' issues and keep current on legislative issues affecting families. The Covenant with North Carolina's Children is a multidisciplinary, statewide coalition advancing public policy to benefit the children of North Carolina.

www.ecac-parentcenter.org - A parent training and information center, ECAC (Exceptional Children's Assistance Center) offers a wide variety of information and workshops plus a lending library on a variety of topics including advocating for children and special education issues.

www.ldonline.org - Offers well-organized, practical information for parents and teachers of children with learning disabilities.

www.med.unc.edu/commedu/familysu/ - The Central Directory of Resources (CDR) is one of the programs of the Family Support Network of North Carolina. The CDR maintains a database of service providers and support organizations.

www.mindsonline.org - All Kinds of Minds undertakes applied research, product development, program design, and professional training to foster the understanding and optimal care of children with differences in learning.

www.nami.org - Spectacular site featuring fact sheets on mental disorders, brochures, reading list, and the latest on research and medication management.

www.naminc.org - Local affiliate contact information, conference information/registration, legislative agenda, newsletters, and on-line store.

www.nichcy.org - Site features searchable database, information in Spanish, fact sheets, briefing papers. NICHCY is the national information and referral center that provides information on disabilities and disability-related issues for families, educators, and other professionals.

www.ocfoundation.org - Distribution of a wide range of articles, pamphlets, books, audio and video tapes about OCD and related disorders, bi-monthly newsletter.

www.pbis.org/english/index.html - Positive Behavioral Interventions & Supports' site where attention is focused on creating and sustaining school environments that improve lifestyle results for all children/youth by making problem behavior less effective and desired behavior more functional.

http://saratoga.ioa.net/~d-g-weaver/ - Lots of practical advice from a parent advocate who has "been there." Weaver's Website by Diane Weaver provides links and resources regarding children's mental illness issues.

www.wrightslaw.com - Hundreds of articles, cases, newsletters, and other information about effective advocacy for children with disabilities and special education law. Free online newsletter.

Summer can pose potential heat related problems for people taking psychiatric medications, making them more susceptible to heat stroke or heat exhaustion.

People taking antipsychotic, antiparkinsonian, or tricyclic antidepressant medications should avoid overheating and prolonged sun exposure.

For example, phenothiazine (Thorazine) and antiparkinsonian agents (like Cogentin) suppress sweating. Butyrophenones (such as Haldol) block the ability to recognize thirst and tricyclic antidepressants (Imipramine, for example) increase heat production in the body.

These medications, as well as diuretics, alcohol, cocaine, amphetamines and others, can prevent the body from maintaining a safe internal temperature. Furthermore, cardiovascular disease, diabetes, hyperthyroidism, and certain other conditions also increase risk of heat related problems.

Do not underestimate the seriousness of heat-related illness, especially if the victim is a child, is elderly, or is injured. Overheating can be extremely dangerous, and can lead to coma and death. Family members and advocates can help by insisting on safe temperatures in treatment facilities and housing arrangements and by checking in with consumers who are without air conditioning.

Consumers and caregivers should be educated about the special vulnerability to heat that these drugs cause. Consumers should ask their doctors or pharmacists about their medication regimen, and should plan how to stay cool if the air conditioning fails. Realize that fans do not cool the body effectively when humidity is high.

Family members and caregivers are reminded to assist persons with severe schizophrenia to dress appropriately for the weather. Schizophrenia can sometimes cause persons to not feel the heat or cold the same as persons without the illness.

If you are disabled, receiving SSDI or SSI and considering working or going back to work, there is a new program to assist in making those decisions.

Making Employment a New Success (MEANS project) now exists in North Carolina to provide benefits planning, assistance, and outreach to beneficiaries and recipients regarding the new Social Security work incentives and how work affects disability program eligibility and Medicare/Medicaid.

The Social Security Administration has awarded a grant to Life Plan Trust, Incorporated (LPT) to coordinate the project in the western part of North Carolina. Other agencies receiving grants for the project in this state include the Division of Vocational Rehabilitation (DVR), United Cerebral Palsy of North Carolina (UCP), and Tri County Industries (TCI).

These agencies have hired Benefits Specialists who are undergoing training and will provide the services to the SSDI and SSI beneficiaries and recipients.

The Benefits Specialist for Life Plan Trust is Dan Wittwer. You may contact him at: PO Box 595, Canton, NC 28716; phone (828) 670-9111 or toll free (888) 211-6607; E-mail meanswnc@msn.com. Dan will be serving the counties of Avery, Buncombe, Cherokee, Clay, Cleveland, Graham, Haywood, Henderson, Jackson, Macon, Madison, McDowell, Mitchell, Polk, Rutherford, Swain, Transylvania, and Yancey.

If you live in another county, Dan will refer you to the agency/Benefits Specialist serving your area.

The Benefits Specialists will provide assistance as follows:

· Provide work incentives information and planning;

· Conduct outreach to beneficiaries and recipients (and to their families) who are potentially eligible to participate in work incentives programs;

· Work cooperatively with public, private and nonprofit agencies and organizations which serve individuals with disabilities and focus on rehabilitation and work-related training and counseling;

· Maintain a collaborative working relationship with the local Social Security offices.

The bottom line goal of this project is to provide information and assistance to beneficiaries and recipients and to their support teams in making informed choices about returning to work and to gain better use of work incentives which may lead to greater self-supporting employment and independence.

Dan is looking forward to hearing from you, and assisting those individuals with disabilities who want to work.

A research team led by a Johns Hopkins Children’s Center scientist has found the strongest evidence yet that a virus may contribute to some cases of schizophrenia.

In this week’s Proceedings of the National Academy of Sciences, Children’s Center neurovirologist Robert Yolken, M.D., and his colleagues report the molecular "footprint" of a retrovirus in the cerebrospinal fluid of about 30 percent of people with acute schizophrenia and about 7 percent of people with a chronic form of the disease. The footprint was absent in the brains and cerebrospinal fluid of all people who did not have schizophrenia.

"While a low level of retrovirus expression occurs in most human tissues, we found an unexpectedly high level of expression in the cerebrospinal fluids from individuals who’d had a recent onset of schizophrenia," says Yolken, director of the Stanley Division of Developmental Neurovirology and a principal investigator in the research. "A significant portion of the people with schizophrenia in our study population had active expression of the retrovirus, whereas individuals without schizophrenia lacked the footprint."

The footprint is actually retroviral RNA created by the active expression of an endogenous retrovirus in the "W" family of endogenous retroviruses (HERV-W). Previous research by Yolken and others suggests activation of the viruses and the onset of certain forms of schizophrenia are caused by both genetic and environmental actors. This recent report identifies the HERV-W-like retrovirus as a prime candidate for the environmental component of some schizophrenia cases.

The researchers also examined brain tissue obtained postmortem from individuals with schizophrenia and from individuals who were normal or had a disorder other than schizophrenia.

Unlike HIV and other retroviruses, endogenous retroviruses are a natural part of the human genome, having inserted themselves into the human genome millions of years ago, in some cases. Scientists are just beginning to understand how these retroviruses may be involved in human diseases, Yolken says.

"While our report doesn’t explain why the retrovirus becomes active in the first place, it presents clues as to what may happen when it does become active," Yolken says. "Our ultimate hope is that we can interfere with the retrovirus by preventing it from become active. If we can do that, it may give doctors another method of treating schizophrenia."

Using molecular markers, the research team looked for retroviral footprints in the cerebrospinal fluid of 35 individuals diagnosed with schizophrenia and in a control group of 12 individuals who were healthy or had a neurological condition other than schizophrenia. Twenty-nine percent of patients diagnosed with acute schizophrenia and 7 percent of patients diagnosed as being in the chronic stage of the disease presented easily detectable levels of a retrovirus footprint from the HERV-W family. By contrast, the cerebrospinal fluid of individuals not diagnosed with schizophrenia contained undetectable levels of the retroviral footprint.

Yolken, whose work has focused on learning how mental disorders may be caused by microbial pathogens, genetic predisposition and environmental triggers, says that while "a lot of cases of schizophrenia probably aren’t associated with retroviruses, we found a significant portion of people with schizophrenia for whom this is the case."

Contact David Bricker, Johns Hopkins Medical Institutions, (410)-223-1728 dbricker@jhmi.edu

Should estrogen be combined with antipsychotic medications? If so, what are the consequences for women with schizophrenia?

Does estrogen augmentation improve a woman's response to the antipsychotic she is taking, especially if she is post-menopausal? Does it improve her thought processes, her memory and attention span, her facility in talking with people and her willingness to be social? Will she safely tolerate a daily supplement of estrogen (and progesterin)?

These are the questions Dr. Miranda Chakos, M.D., of UNC-Chapel Hill, Department of Psychiatry, is asking in the double-blind, placebo-controlled study she is conducting on estrogen supplementation of antipsychotic medications for women with schizophrenia or schizoaffective disorder.

There is a real need for such a rigorous large-scale study. Smaller studies and observations suggest that high estrogen levels may ameliorate symptoms of psychosis.

Researchers have found:

• that for premenopausal women with schizophrenia, changes in psychopathology occur during different phases of the menstrual cycle. When estrogen levels are higher during the cycle, measures of psychosis are lower and response to treatment is better.
• postmenopausal women are more vulnerable than premenopausal women to psychosis.
• there is an increased risk for psychiatric hospitalization for psychosis in the postpartum relative to antepartum.
• patients with higher estrogen levels had lower scores on tests for psychopathology and better behavioral ratings from their nurses.

Women with schizophrenia have a later age of onset than men with schizophrenia and they generally respond better to treatment. This provides indirect evidence that estrogen may confer a protective benefit, both by delaying the onset and reducing the severity of psychosis.

In clinical trials, women with schizophrenia have been treated by augmenting antipsychotics with estrogen. Results suggest that women who receive estrogen recover more quickly than those taking only an antipsychotic. In a recent 28 day double-blind treatment study, 36 women receiving antipsychotics were divided randomly into three groups, one with a placebo, one using a 50 mcg estrogen patch, one using a 100 mcg patch. To evaluate the effects of estrogen, the researchers measured hallucinations, delusions and thought disorder. The women taking estrogen began improving at about day four. By the end of the experiment period, those in the group with the 100 mcg transdermal patch had fared significantly the best.

A caveat -- When a woman uses hormone replacement therapy, she should have regular health checks. Caution is advised if she has a strong family history of breast cancer.

The February/March issue of NAMI Wake County’s The Iris carried an announcement of Dr. Chakos' study and a call for volunteers. Each participant will be in the study for 11 weeks. She will receive a full psychiatric and medical examination and a mammogram

We’re on the home stretch, and driving!

For the fiscal year that ends this June 30, our Board adopted a fund-raising plan with a goal of $250,000 in contributions from individuals to the NAMI North Carolina Annual Fund, to support our wonderful programs.

For most organizations, that would be a most ambitious target: an increase of 34% over last year’s total of $187,081.

Through three-quarters of the year—i.e., by March 31—we’d reached $190,853, in direct gifts, pledges, and contributions to workplace campaigns (United Way drives, Community Health Charities, and so on).

If we can sustain that level of giving for one more quarter, the goal will be exceeded by almost five thousand dollars.

In other words, it’s going just great! If you’ve already contributed or pledged, thank you for your generous support! It means so much.

Coming Attractions

May 23

Coalition 2001 Legislative Rally Day, Raleigh. Arrange to speak with your legislator, attend legislative committee meetings, visit the House and Senate galleries while the chambers are in session. Call the state office for information, 1 (800) 451-9682.

June 1-3

NAMI North Carolina’s Family-to-Family Teacher Training in Durham. Interested? Call the state office at 1 (800) 451-9682.

June 24-26

National Association for Rural Mental Health conference in Wilmington, sponsored by the Coastal Area Health Education Center. Sheryl Pacelli at (910) 343-0161, www.narmh.org, or sheryl.pacelli@coastalahec.org.

July 11-15

NAMI Convention, United By Hope...Working for Change, Washington, DC

President: Don Clark  (2003)  NAMI High Country
1st VP/President  Elect: Ken Farrington  (2002)  NAMI Forsyth County
2nd VP: Beth Garriss  (2003)  NAMI Guilford County
Secretary: Grace Davis  (2003)  NAMI Cabarrus
Treasurer: Nancye Bryan  (2002)  NAMI Durham

Sarah Boyd  (2004)  NAMI Rowan County
Nancy Carey  (2004)  NAMI Western Carolina
Gerale Condron  (2003)  NAMI Wayne County
Joe Donovan  (2002)  NAMI Wake County
Bert Esworthy  (2002)  NAMI Cumberland County
Evelyn Esworthy  (2003)  NAMI Cumberland County
Rebecca Faucette  (2003)  NAMI Randolph County
Tom Hadley  (2003)  NAMI Wake County
Dottie Harrison  (2004)  NAMI Iredell County
Martha Higginbotham  (2004)  NAMI Forsyth County
Linda Howell  (2004)  NAMI Western Carolina
Diane Jenkins  (2002)  NAMI Forsyth County
*Patricia McGinnis  (2003)  NAMI Foothills
Eileen Silber  (2002)  NAMI Guilford County
Mary Ann Widenhouse  (2003)  NAMI Foothills