=============================================================== == == == ----------- ALS Interest Group ----------- == == ALS Digest #814 (01 March 2001) == == == == ------ Amyotrophic Lateral Sclerosis (ALS) == == ------ Motor Neurone Disease (MND) == == ------ Lou Gehrig's disease == == ------ maladie de Charcot == == == == This e-mail list has been set up to serve the world-wide == == ALS community. That is, ALS patients, ALS researchers, == == ALS support/discussion groups, ALS clinics, etc. Others == == are welcome (and invited) to join. The ALS Digest is == == published (approximately) weekly. Currently there are == == 4700+ subscribers in 70+ countries. Please be advised, == == the editor is not a medical doctor and the Digest is == == not peer reviewed. This newsletter is not intended to == == provide medical advice on individual health matters. == == Any such advice should be obtained personally from a == == physician. == == To subscribe, to unsubscribe, to contribute notes, == == etc. to ALS Digest, please send e-mail to: == == bro@met.fsu.edu (Bob Broedel) == == == == Bob Broedel; P.O. Box 20049; Tallahassee, FL 32316 USA == =============================================================== == Back issues of the ALS Digest are available on-line at: == == http://www.glnicholas.com/ == == http://www.alslinks.com == == http://www.alssurvivalguide.com == == http://cc4144-a.ensch1.ov.nl.home.com/~digest == == http://health.oldeman.net == =============================================================== CONTENTS OF THIS ISSUE: 1 .. Action needed - Homebound Clarification Act 2 .. re: HMO Discussion 3 .. sore heels 4 .. lost e-mail addresses 5 .. re: Heavy Metals and ALS 6 .. speech enhancer 7 .. Hot Bottom 8 .. transmitter/receiver (1) ===== Action needed - Homebound Clarification Act ========== >From : DJayne23@aol.com Date : Wed, 28 Feb 2001 07:00:47 EST Subject: Action needed today please Congressman Edward Markey of Massachusetts is ready to reintroduce The Homebound Clarification Act this week, but he wants more co-sponsors. Please call your Congressman and ask him or her to co-sponsor Congressman Markey's bill. A phone call is more effective than a letter or email. All three together will be most effective. A co-sponsor letter is provided below. To find the contact information for your Congressman, please visit NCAHB's website and click on How I can help http://www.amendhomeboundpolicy.homestead.com/ Timing is extremely important in getting this bill reintroduced. I encourage you to please call your Congressman today. Thank you very much in advance, David Jayne djayne23@aol.com NCAHB founder Re: Letter In Support of Modifying Medicare's Homebound Restriction by Co-Sponsoring Congressman Markey's Homebound Clarification Act of 2001 My name is [Include your name] and I am from [city and state]. I signed David Jayne's petition at www.petitiononline.com as number ____________ I have become aware of David Jayne's Internet Petition to change Medicare's harsh and restrictive homebound policy. David Jayne has had a 13-year battle with amyotrophic lateral sclerosis (ALS). He uses a portable ventilator to breathe and speech processor to speak. He lost benefits due in part to attending a football game. I want you to know that I signed the petition to assist him and all similar beneficiaries with significant chronic illness for the following reasons: Medicare's current home care criteria focuses in part on the frequency, duration and purposes which beneficiaries with significant chronic illnesses may leave their homes rather than focusing on their condition. As such, these criteria are wholly arbitrary. Going to a football game never changed one's underlying skilled medical needs. If persons with significant chronic illness, who are deemed by Medicare to be significantly dependent, are able to acquire the technological and personal resources necessary to leave their home, they should be granted the freedom to do so and still receive the medical and personal care they need and deserve while living at home. Sections 501-508 of the Medicare, Medicaid and SCHIP Benefits Improvement and Protection Act of 2000 amend 42 U.S.C. '' 1395f(n), 1395(n), 1395fff(b), 1395(x)(v) to modify the Medicare home health benefit. It now allows certain adult day care and religious participation. This amendment, however, fails to assure such persons will not lose their Medicare home care benefits if they so choose to go on a vacation, volunteer in their community, go to a sporting event, or go to school or otherwise try to participate in American Society despite a severe impairment (Public Law 106-554, effective 12/21/2000). The current policy is unacceptable to us; it is an anachronism, and it assails the most vulnerable members of our society each and every day that they must remain virtual prisoners of their homes. We believe that a better policy can be implemented. We believe in our Country and its institutions. Please assist us in changing this policy so that persons with significant chronic illnesses can live in our communities without the retribution of loss of vital Medicare homecare benefits due to arbitrary non-medical restrictions. We request your co-sponsorship of this legislation which will remove the frequency and duration criteria. Sincerely, Your Name p.s. please refer to http://www.amendhomeboundpolicy.homestead.com/ for more information (2) ===== re: HMO Discussion ========== Date : Fri, 16 Feb 2001 14:48:52 -0600 Subject: HMO Discussion >From : Patrick Griffin In a recent ALSD, Kip Sullivan tried to discredit statements made by Dr. Oppenheimer. While the conclusions made by Mr. Sullivan and Dr. Oppenheimer are theirs to make, I question some of the statements made by Mr. Sullivan. I had graduate training in health care administration, I spent 22 years in health care provision and administration, and I was employed as a hospital CEO for a period of time. I speak from my training and experience. Mr. Sullivan said, "In that article, I reported finding that HMO care was inferior to the care offered by doctors working for traditional insurance companies." I do not know if Mr. Sullivan made an error of fact, or simply a typing goof, but it is my understanding that doctors in the "traditional" (pre-HMO) system do not work FOR insurance companies. That is not to say that some physicians may be employed by insurance companies as claims reviewers, but in actuality, doctors submit their claims to the payers, but are not actually employed by them. HMOs, often times, employ physicians to provide health care to those in their plan. Mr. Sullivan goes on to say, "Instead he argues that it is "less than useful" to compare the quality of HMOs as a class with the quality of traditional health insurers as a class. He doesn't explain why this comparison is "less than useful." ... "HMOs are a very different form of insurance." HMOs are NOT insurance companies. HMO stands for Health Maintenance Organization. Since their inception, HMOs manage costs by attempting to reduce utilization. Ideally, that would be done through preventive medical care, regular proactive care (physical exams and quick intervention), and elimination of clinically unnecessary procedures. HMOs are business and as such must maintain a certain return on investment (ROI). They do that by managing the quantity and quality of health care provided by their doctors to plan participants. On the other hand, insurance companies use a retroactive reimbursement system. A claim for medical services is submitted and all or part of it is paid based upon the patient's policy and the conditions under which care is received. For business plans (such as the coverage provided to the staff of the hospital where I worked), we had a yearly utilization review. At that time, if utilization was higher that expected, the fee for the next year's plan would be increased, or the benefits of the current plan were reduced (higher copayment or reduced pharmacy, dental, eyewear, etc. riders.) Our insurer cared little about the quality of care received, but only that it maintained its ROI by producing an adequate profit level. Mr. Sullivan then states that "Comparing HMOs as a class to traditional insurers as a class is just as necessary and useful as, for example, comparing the fuel efficiency of SUV's as a class to the fuel efficiency of cars as a class." I think a better analogy would be comparing the benefits and liabilities of apples to oranges. Access, quality, and cost, the generally accepted measurements of health care systems, can be applied in this comparison. Where I live, apples are freely available certain months of the year, and oranges at other times. Their quality varies, as does their cost. I might choose apples when they are in the stores, large, juicy, and inexpensive. Or maybe I just am hungry for an apple. The same applies to oranges. The same applies to health care plans. The SUV comparison is flawed. Oddly, Mr. Sullivan states "Yes, I know, some SUVs get better mileage than other SUVs, but it is useful to know that SUVs as a class get worse mileage than cars." He might like to review the mileage and emissions of current SUVs. Most are better that many new cars, and almost all are better than cars but a few years old. While he may not think my observation is relevant, how am I to judge his conclusions except by his own mistaken analogy? He goes on to state, "US citizens and lawmakers need to know, Has the takeover of the US system by HMOs damaged quality of care? The answer, according to my study, is yes." In my humble opinion, the true so-called decline in the US health care system (if there is actually such a system, which is open for discussion!) began with the cost-plus fee reimbursement system that predates HMOs. For those who are unfamiliar with this, it was the common approach to paying for health care by insurers or other payers. Like an auto mechanic, a health care provider would account for all the direct costs of providing the care (medicine, X-rays, etc.), add indirect costs (doctors' time/fees, nurses' salaries, office upkeep, etc.), and toss in a little for inflation and depreciation and purchase of new equipment. The insurer/payer would send the doctor, clinic, or hospital a check. With the cost of living, the costs, and the bills, escalated in an uncontrolled manner. Medicare was in jeopardy. Therefor they changed their system from a cost-plus reimbursement system to a predetermined payment schedule. They would pay a set cost for a procedure, such as delivery of a healthy baby. They did allow hospitals to add a plus-up for direct and indirect costs. Hospitals started being very efficient identifying costs that were reimbursable. Medicare called that gaming the system, so they wrote more rules and tightened up the reimbursement policies. Larger hospitals installed computers and hired people to help them maximize their revenue. Smaller hospitals (like mine) contracted for assistance via computerized phone line hook ups. That "gaming" caused an ever-increasing spiral of rule changes, and reactive adjustments. So began the continuing attempt by Medicare to reduce costs, and hospitals and doctors to maximize revenues. The next inevitable step was that large insurers, like Blue Cross-Blue Shield, began to use Medicare reimbursement rates and policies for their baselines. My hospital had 81% Medicare revenue, and Medicare reimbursed us for only about 80% of our costs. So we had shifted the costs to private insurers, but then they reduced their reimbursements to Medicare levels. Again, our hospital, like all the others, shifted the costs to smaller insurers and private payers (individuals). It was that, or close the doors. About that time, HMOs were organized in an effort to salve the contusions of the "system". HMOs were privately owned health providers which adopted the Medicare model: pay only what the schedule allows. Since in many areas, Medicare was the "big dog", providers had little choice but to toe their line. In some areas, health insurance became so costly, that people went without. Enter the HMOs. They promised a low cost way to give people assurance that their health care needs would be met. And since the HMOs' business plans were really an evolution of Medicare's prospective payment scheme, they began to bleed red ink in the accounting departments. Some closed their doors, and some adjusted to stay in business. So I do not feel you can offer a comparison of HMOs and insurers. I see them both as spots along the continuum of heath care in America. We've gone in this country, from the days where "Doc" was given a chicken for setting a broken arm, and no hospitals existed, to the uncounted ways individuals and organizations seek to minimize their cost exposure and still maintain access to the highest quality health care environment in the world. Shall we go back to the days where everyone paid out of their pocket for health care? Someone HAS to pay. Without money, we could neither build health care facilities or staff them. There would be no research, and no hope for conquering ALS and other diseases. You cannot have your cake and eat it, too. And don't try to pander the socialized health care systems of other countries. They all have their problems, their really ill people come to the U.S. for care, and their physicians come here for training (and some stay to work). The U.S. health care environment has its problems, but trying to make one entity (HMOs) the fall guy does not solve any problems. Mr. Sullivan concludes with "Since Dr. Oppenheimer thinks highly of Kaiser Permanente's HMO, let me quote David Lawrence, Kaiser's CEO: "People have almost no ability to compare health plans" ("Does your HMO stack up?" Newsweek, June 24, 1996), p. 56)." I agree. I cannot envision any other answer. However, it appears that if Mr. Sullivan cannot abide with HMOs, he can neither accept as fact a statement by one of their officials. Most Americans do not understand the health care they receive, let alone the vast resources that make that care available. Virtually every day, Medicare announces changes in its system in the Congressional Record. Has any American read, let alone understand, all the Medicare regulations? The same goes for understanding the full extent of the operations of health insurers, payers, and providers, such as HMOs, PPOs, private practitioners, the VA, the USPHS, the BIA, the U.S. military, public hospitals, school-affiliated medical centers, the LifeFlights, the volunteer ambulance crews, and others. Last but not least, let's not forget the family practice doctors who give sole care to everyone in areas often exceeding 1000 square miles, working 80+ hours a week. I'll wager that no one who reads this has that kind of comprehensive knowledge. I'll also bet that no one has a solution for meeting everyone's needs and desires. I sure don't. I wish I did. Patrick Griffin (3) ===== sore heels ========== >From : "Leo Lafreniere" Subject: sore heels Date : Mon, 26 Feb 2001 21:02:20 -0800 I'm a new subscriber, I've been diagnosed with ALS July, 2000 and I'm experiencing pain on the heels of my feet and I would like to know if there is something that I can use to prevent this. Thank You. Leo (4) ===== lost e-mail addresses ========== Date : Wed, 28 Feb 2001 14:50:20 -0800 >From : rgriffiths@salsec.sd8.bc.ca (Dan Maloney) Subject: My computer crashed and I lost the e mail address for Bob Johnson, Castle Hill N.Z. Love to hear from you Bob. Please contact Dan Maloney at rgriffiths@salsec.sd8.bc.ca. Also I had an e mail from someone else, wanting to correspond and lost that as well. Hoping to hear from you both. (5) ===== re: Heavy Metals and ALS ========== Date : Wed, 28 Feb 2001 17:13:48 -0500 >From : Christopher A Bomba Subject: Heavy Metals and ALS It has often been asserted here that there exists no scientific evidence connecting mercury and ALS. For those who would like to review this nonexistent evidence I highly recommend "The Role of Metals in Autoimmunity and the Link to Neuroendocrinology." This excellent article coauthored by a Swedish professor of immunology and by a medical student reviews and discusses dozens of scientific articles connecting mercury and ALS. You may read it right now by going to the following website: www.melisa.org Admittedly the issue is still debatable, but I am one PALS who is not waiting around for a consensus to start getting the mercury out of my body. Christopher Bomba (6) ===== speech enhancer ========== >From : "Mark Woods" Subject: RE: Date : Mon, 26 Feb 2001 23:12:07 -0600 If a person has ANY speech left, they should try a speech enhancer. My voice is clear, but quiet and it makes me loud enough for everyone. It'll also help if you are hard to understand. Check it out at www.speechenhancer.com God bless, m (7) ===== Hot Bottom ========== >From : "The Cottrills" Subject: Hot Bottom Date : Sun, 18 Feb 2001 22:51:35 -0500 Can anyone give me any tips on how to help my dad (diagnosed Mar/98) with the problem of having an extremely hot bottom. I assume this is from sitting for hours on end. He is really uncomfortable and we would appreciate any tips or help you could provide. Thanks, Cheryl at cottrj@bmts.com (8) ===== transmitter/receiver ========== >From : Bethbatemn@aol.com Date : Wed, 28 Feb 2001 12:48:56 EST Subject: Does anyone know of any sort of intercom doorbell that can transmit wireless to a transmitter or receiver that could be carried with a person so that you could answer or talk to a doorbell from anywhere in the house? I am looking for such a device. Beth Bateman bethbatemn@aol.com === end of alsd 814 ===