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PROGRAM NOTE: Our May l7th meeting with Rep. Dick Myers (topic: legislation relating to mental illness) will be held in Classroom 4, Mercy's North Wing (that's on the same floor as our usual meeting — 1st floor). Program Meeting Board Meeting Mood/Anxiety Disorders Support Group | ||||||||
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From the Editor: I welcome items of interest and suggestions. Any newsletter errors are probably mine. Please let me know about them — and what you like as well. Bill Asenjo: basenjo@avalon.net; 358-7474 Johnson County Board of Supervisors Candidates Forum (sponsored by ARC) will be held on May 30th at 7PM in Room A of the Iowa City Public Library FROM JUNE: We will sell NARSAD Artcards and T-Shirts *in the main lobby of the UIHC, May 15-19, from 10-4. Look for our displays on the kiosk in the center of the main lobby. NORTHSIDE BOOK MARKET Families Welcome,466-9330 FROM CLAUDINE: Excerpt from NAMI E-News April 5, 2000 PROPOSALS FOR MEDICARE COVERAGE OF OUTPATIENT PRESCRIPTION DRUGS COMMITTEE ON FINANCE UNITED STATES SENATE — MARCH 22,2000 Mr. Chairman, Senator Moynihan and members of the Finance Committee, I am pleased today to offer NAMI's views on proposals before the Congress to expand the Medicare program to cover the costs of outpatient prescription drugs. In addition to serving as NAMI's president, I am also the mother of Greg Shannon who was diagnosed with schizophrenia in 1985. For the past 15 years, Greg and our family have struggled with his illness. Like so many of NAMI's 210,000 consumer and family members, I am grateful that the Finance Committee is now poised to fill what has been the most significant gap in the Medicare — outpatient prescription drug coverage. NAMI is extremely pleased that this critical issue is gaining significant bipartisan attention in Congress this year. As President Clinton observed in his January State of the Union address, no one doubts that if the Medicare program were enacted today outpatient prescription drug coverage would be included as part of the basic benefits package. As the Committee has heard from many witnesses on this issue, prescription medications played a relatively minor role in medical care in 1965 when President Johnson signed into law Title XVIII of the Social Security Act. Fortunately, advances in science, especially in the development of new medications for schizophrenia and depression, have made it possible for many consumers to achieve a level of recovery never dreamed of decades ago. It is NAMI's view that these new treatments are central to higher functioning and recovery. TWWIIA and its Role in Recovery from Severe Mental Illness We at NAMI know that this vision of treatment and recovery is shared by all the members of this Committee who sponsored and pushed so hard for passage of the Ticket to Work and Work Incentives Improvement Act (TWWIIA) last year. TWWHA addresses many outdated and unfair eligibility rules in the S SDI, SSI, Medicare and Medicaid programs that forced beneficiaries to choose between a job and health care coverage. During debate over this legislation last year, and since its enactment, we heard from consumers and families who told of their frustrations at seeing genuine recovery from severe mental illness fall short because they were forced to quit a job or cut back their hours because of fear of losing health coverage. While TWWIIA was a tremendous bipartisan accomplishment, it is a first step. Perhaps the most important next step that Congress can take to help people with severe disabilities go to work is to add an outpatient prescription drug benefit to Medicare. NAMI agrees that the 4.5 years of added Medicare eligibility for SSDI beneficiaries included in TWWIIA will be critical in helping people to stay on the job longer. However, for too many people with severe disabilities on SSDI, this extended period of health care coverage comes with a benefit package that is inadequate. The most overwhelming gap in the Medicare package is coverage for outpatient prescription drugs. The Interests of Non-Elderly SSDI Beneficiaries Must Be Part of This Debate Currently, there are 1.3 million non-elderly disabled Americans on SSDI. Of these, nearly 400,000 became eligible through a mental disorder. People with severe mental illnesses join the cash benefit rolls earlier than any other disability category. The typical onset of an illness such as schizophrenia is late adolescence or early adulthood. Young adults with the most severe, disabling symptoms are likely to qualify for benefits within a year or so. Many depend on benefits for a large part of their adult life. By contrast, individuals who use SSDI as an early retirement program for injuries or chronic disabilities stay on cash benefits for a brief period before moving into Social Security's main retirement program. Thus, the long-term fiscal implications of SSDI beneficiaries with severe mental illness go beyond their numbers. Second, the lack of an outpatient prescription drug benefit in Medicare has important consequences for state Medicaid programs. Under the current system, many SSDI beneficiaries with severe mental illnesses are forced to go into poverty to establish eligibility for Medicaid to get drug coverage. Once on Medicaid, these individuals must stay poor to keep Medicaid coverage. Persons who are dual eligible for SSI and SSDI face similar concerns, as do so-called "disabled adult children," who must move onto SSDI when their parents retire. This system also prevents many families from providing even modest forms of financial assistance out of fear of jeopardizing Medicaid eligibility. The TWWIIA will be a tremendous help to many consumers and families in this arena, but more needs to be done to ensure that people do not have to stay poor for their entire adult life, just to access prescription drug coverage. What Does NAMI Want to See in a Medicare Outpatient Prescription Drug Benefit?
However, some health plans (including many that now are a part of Medicare through the Medicare Plus Choice program) place restrictions on access to medications. Often these limitations are designed primarily to discourage the use of more expensive medications. NAMI supports efforts to ensure that Medicare (and all health plans participating in the program) offer access to all effective and medically appropriate medications. If Medicare (or a participating health plan) uses a formulary, exceptions from the formulary limitation must be allowed when a non-formulary alternative is medically indicated. Moreover, procedures should be established whereby beneficiaries can appeal a decision to prescribe a specific medication. Finally, Medicare (and participating plans) should not be allowed to require beneficiaries to switch from medications that have been effective for them. MARGOT KIDDER'S SEARCH for SANITY by Karen Dustman, Natural Health Magazine, March 2000 (EXCERPT) Margot Kidder starred as Lois Lane *in the 1979 movie "Superman." In 1996, she was discovered ragged and hungry in the backyard of a Glendale, California home. Convinced her former husband and the CIA were out to kill her., Kidder roamed the streets of Los Angeles, sharing food and a cardboard shack with a homeless man. Kidder had lost the caps on her front teeth, chopped off her hair, and swapped her Armani suit for a homeless man's dirty T-shirt and pants. Kidder has bipolar disorder. Born in 1948, she spent almost 20 years seeking treatment. After her 1996 incident, Kidder realized the conventional therapies she was receiving weren't working. Now in her 4th year of good mental health, Kidder speaks for mental health organizations about how she found natural ways to treat her disorder. Natural Health: When did the first signs of your illness emerge? Margot Kidder: In my teens I started having mood swings and suicidal thoughts. I also had periods of mania, though I just thought it was great fun. I saw my first shrink when I was about 20. He told me I had schizophremia and insisted I take valium. For years doctors insisted it wasn't addictive — it took me more than 10 years to get off of it. Over the years I got just about every diagnosis in the Diagnostic and Statistical Manual (DSM). What I've learned is that those labels are just names for collections of symptoms. For example, a page in the DSM might list 9 symptoms. If you have 4 or 5 of those symptoms, you get the label on the top of the page. But the symptoms can change, depending on what kind of day you're having, and which doctor is diagnosing you. In the 80s I was diagnosed with manic-depression and my doctor gave me lithium. In those days, doctors were giving higher doses than the 900-1200 mgs a day they prescribe now. My hands shook, my jaw shook, I couldn't think. I felt kind of dead. I said to myself, if I'm going to feel dead, let me just be a little crazy. Natural Health: But you managed to keep acting. Margot Kidder: My career went up and down. I went through millions of dollars. I'd buy things for friends, take people to Paris. Once I stayed up for 3 weeks because I felt I was called on to write a new religion for women. Natural Health: What brought these episodes on? Margot Kidder: Stress was a big factor. And hormones definitely had an effect. I think every one of my bad episodes started the week before my period. But the problem was also not eating properly, smoking cigarettes, and living on caffeine and occasionally tequila. Prescription drugs would make me feel like hell, so I threw them away and then I would flip out. Nobody told me you just can't stop taking those drugs. After my public flip-out in 1996 1 went to a 5-element acupuncturist. She treated me 4 times a week which stabilized me in about 3 weeks. Since then psychiatrists have told me that acupuncture can't do that, but it did for me. I did a lot of homework. Conventional books would say that a deficiency of niacin and protein can cause mental disturbances. But then it would say to take a synthetic drug to deal with the symptoms. In another book I read that a deficiency of GABA (an amino acid that controls dopamine level) causes nervousness and agitation. So I thought, instead of taking Depakote, an drug that produces GABA, why not take GABA? Depakote damages your liver and can cause depression. Natural Health: But you knew you couldn't just stop taking your medications. Margot Kidder: Yes. But I started taking megadoses of B vitamins and amino acids such as GABA and Taurine. A year later I had cut down on my medications and was feeling much better. Natural Health: People with bi-polar often have food sensitivities, was that true for you? Margot Kidder: At first I dismissed the idea. But then my doctor tested me and told me I was allergic to some of my favorite foods — eggs, dairy products and wheat. It's been difficult giving up my favorite foods, but aside from feeling better, I've lost a lot of weight. My doctor also confirmed I have extremely low blood sugar which can cause mood swings. So I eat regular meals — which I didn't do before. I'm supposed to eat a lot of high protein foods, stay away from sugar and caffeine. I do stress-reduction techniques. Stress pumps cortisol, adrenaline into your nervous system — which is damaging. So I exercise a lot and get 5-point acupuncture, deep tissue massage, and craniosacral manipulation twice a week. This helped reduce my stress and my need for medications. In the past I didn't realize that diet could affect my mental health, or that I would feel crazy if I went a day or two without sleep or food. I did what most of society does — cut off my mind from my body. Natural Health: Do you have any advice for people with bipolar disorder? Margot Kidder: Whatever you do, don't stop taking your medicine. Find an Orthomolecular doctor, get a hair analysis, and find out which nutrients (vitamins, minerals, amino acids) you're lacking. Get blood tests for food and environmental allergies, and get a sugar-glucose test to find out if you're hypoglycemic (low blood sugar). Find ways to relieve stress. Work on your problems and talk to your doctor about gradually reducing your medication. For more information: Five-element Acupuncture: Academy for Five Element Acupuncture Orthomolecular Medicine: Canadian Schizophrenia Foundation Deep Tissue Massage: American Massage Therapists Association Craniosacral Manipulation: The Upledger Institute Family Opportunity Act of 2000—S. 2274: A bill introduced into the Senate will give more children with serious disabilities access to needed health and mental health services by targeting the coverage gap faced by families who make too much to qualify for Medicaid. It will permit middle income families to buy into the Medicaid program on a sliding scale. Action is needed NOW to bring this to the Senate floor. Contact Senator Tom Harkin and urge him to co-sponsor or at least support S2274.
© 2009 Bill Asenjo | ||||||||