April 2006

 Vol. III, Issue #28


Bergen CFS Support Group Newsletter

Meeting Report

While there is no meeting this month, there are still of lot of things going on in the CFS community.  This edition is extra long.  It includes recent publications that may be of interest to you.


Just For Fun

Social Director, Frank Kawa, has set not one but two dates for luncheons during April.  Since there is not Sunday meeting, he thought it would be good to try for two gatherings.  The first will be Wednesday April 12th and the second on April 26th.  Both events will be at The Westwood Diner Pancake House is on Old Hook Rd, in Westwood, just east of Pascack Valley Hospital.  The group will be there from 1:30 PM until about 3 PM.  Just show up.  If you have any questions or wish to let Frank know you are coming, you can call Frank.  He can be reached at 201 768-4111.  You do not need to contact Frank to attend. 


For Your Information


But You Don’t Look Sick This article was written by someone with Lupus but the reader is sure to identify with the story.  Please use the link below to read this article.


Please note that this story is copyrighted and should not be reprinted in any form without permission from the author. Feel free to print the link to this page, or forward the link onto those who you may feel will enjoy the story. - Thank you!


Our Newsletter - Reminder – a note to our US postal recipients - (not electronic recipients)

There are factors to be considered regarding this newsletter.  One is the fatigue factor for the person who prints and mails the copies to US mail recipients.  The second is financial.  Due to the rising cost of printing and mailing the monthly newsletter via the US Postal Service, it has been necessary to re-evaluate this option.  If you have an email address and are currently receiving the paper version, we would appreciate your emailing info so we can send it to you by way of the yahoogroups account.   If you don’t have email or a computer, many libraries have computers for public use and there are a variety of free mail websites available at libraries.  For the few that may not have access to any email possibility, we are asking that you send stamps to cover the mailings for the 2006-2007 season.  Newsletters are sent from August through June.  We will continue mailings through June 06.  The new policy takes effect with the August mailing.  Stamps (11 $.39 stamps) can be sent to Anne Gilmartin 211 Bedford Road Dumont, NJ 07628.  If you have any questions or financial concerns, please call Anne at 201-244-5188.  You may also contact me at pat@larosas.net.   We want to continue reaching out to you as a support system.  Please consider making the change.  Please note: if we do not receive a response, it will be assumed that you no longer wish to receive the monthly mailing.  We do hope to hear from you.


Medicare Part D  - the good news and the bad

FYI - Jim McGarry <mcgarry@hinj.org> wrote:
Subject: FW: MMA Headlines: Tuesday, April 4, 2006   Date: Tue, 4 Apr 2006 
MMA reporting today includes coverage of the release of the UPI survey yesterday, which points to a growing perception among seniors that the new program is working well.  This survey seems to  confirm a great deal of anecdotal feedback (including that of our own family and friends) that increasing numbers of seniors have become accustomed to the structure of the program and, more importantly, are well-able to save substantially, while obtaining valuable benefits. On an ongoing and troublesome note, there is evidence that scams targeting eligible seniors are on the rise.  We can all be on the alert and help our neighbors, friends and family to avoid these traps.  This is particularly important, as we approach the deadline for enrollment and want to be certain that no eligible senior misses the opportunity to enroll.
Stay well!
1) Seniors warned to be on guard   By BOB MOOS  The Dallas Morning News, TX [4.4.06]

Mary Solis thought she'd be busy enrolling seniors in Medicare drug plans about now. Instead, the coordinator for an anti-fraud program in South Texas has helped dozens of older adults get out of them.  "They were sold drug plans that didn't cover many of their prescriptions," she said. "Some have paid a couple of hundred dollars a month for drugs that should have cost them only a few dollars."  Ms. Solis said insurance agents went to adult day care centers, grocery stores and senior centers in Hidalgo County early this year and enrolled dozens of people in plans without checking their drug needs. “The agents only wanted to rack up sales commissions," she said. As the May 15 deadline approaches for joining a Medicare drug plan, senior advocates are warning older adults to guard against scams and deceptive marketing. Even consumer advocates say it's hard to get an accurate estimate of how much fraud there is. Consumer groups say Medicare-related con games have been less prevalent in Texas than in some other states, but they warn that could change over the next month. “The rush to sign up and the confusion that surrounds the benefit will breed fraud and abuse," said Barbara McGinity, program director of the Better Business Bureau Education Foundation, which has fielded consumer calls about drug plans' marketing in Texas. Medicare recently issued a "scam alert" about a telephone scheme in which a con artist caller offers a fake drug plan for a one-time $299 fee as a trick to get the beneficiary's bank account number. "Anyone who receives such a call should hang up. Drug plans can't enroll you by phone unless you make the call," said Carmen Narganes, who oversees Medicare's anti-fraud efforts in the Southwest.  Legitimate providers won't ask for payment over the phone, she said.  They must bill the beneficiary for the premium, which is often set up as an automatic withdrawal from someone's Social Security check.  Ms. Narganes said many swindlers are interested in stealing people's identities, so older adults should refuse to give their bank account, credit card, Medicare or Social Security numbers to strangers. Bad sales techniques Senior advocates say they've heard of only a few instances of the $299 scam in Texas. More common have been sales techniques that violate Medicare's rules for marketing drug plans.  The violations include posing as a Medicare representative, visiting someone's home uninvited, charging a fee to help find a drug plan and offering a gift worth more than $15 to enroll. One of the most common abuses has been telling seniors that the government requires them to buy drug coverage.  "Some people don't understand the new benefit is voluntary, so they end up purchasing something they don't want," said Mark Narvaez, manager of state operations for AARP Texas.  Advocates say seniors have also complained they were deceived into buying comprehensive health coverage from a Medicare managed-care plan when all they needed was the drug insurance.  "We've come across overly aggressive and unethical sales people who've told seniors they have to join a Medicare HMO to get the new drug benefit," Ms. McGinity said.  The older adults were satisfied with Medicare's traditional coverage for hospital and doctors' costs and only wanted to  purchase the prescription benefit to supplement it.  


Conning low-income
Another scheme is selling coverage to low-income beneficiaries who were automatically enrolled in a plan last year. The new coverage almost always has higher out-of-pocket costs.  "I'm afraid some salespeople are trying to take advantage of lower-income individuals who may not even understand they're already covered," Ms. McGinity said.  AARP, the Better Business Bureau and other agencies say it's difficult to determine the extent of the fraud and abuse because Medicare declines to say how many complaints it has received and because seniors are reluctant to report suspect activities.   "Many older adults are embarrassed to admit they've been duped," Ms. McGinity said.  Advocates say anyone who suspects a scam or inappropriate marketing should report the problem to Medicare or the federal Health and Human Services Department's inspector general.  Complaints about particular insurance agents should be filed with the Texas Insurance Department. The National Association of Insurance Commissioners says complaints sometimes come from agents themselves who become annoyed by competitors' abusive practices.  Ms. Solis, who coordinates the Senior Medicare Patrol consumer group in South Texas, said she notified Medicare and the Texas Insurance Department about her seniors' drug-plan troubles. She's now working with both agencies to get reimbursements for her clients' extra drug costs and switching them to other plans that cover their prescriptions.  Medicare has been conscientious about investigating seniors' complaints, said Jolie Crowder, an executive with the National Consumer Protection Technical Resource Center in Washington.  The center has monitored the drug benefit's rollout and Medicare's fight against fraud and abuse.  "My message to seniors is: 'Report, report, report. Your concerns will be heard,' " she said.  Repercussions Medicare officials say that so far they've mainly reminded drug plan providers about the marketing rules. Those that refuse to comply will face fines and other penalties, including a freeze on signing up new members.  Advocates agree that the best way to stem fraud and abuse in the drug benefit is to teach older adults how to protect themselves against con artists and aggressive salespeople. Though the May 15 enrollment deadline is near, seniors shouldn't feel pressured to act, Ms. Narganes said. If they've visited with a salesperson, they should call the drug plan and verify what they were told.  Older adults with questions about a plan should also ask for help from someone they trust, such as a family member or friend. "It's a good time for caregivers to get involved," Mr. Narvaez said.   Ms. Solis said her clients' recent encounters with overzealous salespeople reminded her how vulnerable many older adults are to scams and deceptive marketing. "They were all raised in an era when people were taught to be trusting," she said. "Unfortunately, that doesn't work anymore."

Guard against scams Here are some facts about Medicare drug plans:

-         Drug-plan sales people can't come to your home uninvited.

-         Medicare representatives don't recommend one drug plan over another.

-         Drug plans can't enroll you over the phone unless you call them.

-         Drug plans can't ask for your bank account, credit card, Medicare or Social Security numbers over the phone.

-         Drug plans can't ask for payment over the phone; they must send you a bill if you enroll over the phone or on the Web.

SOURCES: Medicare and the National Consumer Protection Technical Resource Center Resources For Medicare beneficiaries who think they've become victims of drug scams or deceptive marketing:

-         Health Integrity: 1-877-772-3379

-         Medicare: 1-800-633-4227

-         Senior Medicare Patrol Project:

In Texas, call Barbara McGinity at 1-877-468-9222; For Spanish, call 956-585-7672. Texas

Department of Insurance: 1-800-252-3439

-         U.S. Health and Human Services Department's inspector general: 1-800-447-8477


2) For seniors, important Medicare prescription plan deadline looms By PAM KELLEY Charlotte Observer, NC [4.4.06]

The clock's ticking. If you're 65 or older and lack prescription drug coverage, you have less than six weeks to sign up for Medicare's new prescription drug plan. Maybe you've delayed enrolling because it's complicated and confusing.  Fair enough. But you'll miss out if you don't enroll by May 15.  Why?

1. The plan likely will save you money. Federal officials report that people who choose the least expensive plan, based on the drugs they're using, are saving nearly 60 percent of what they'd pay without coverage.
2. If you miss the May 15 deadline, you'll pay more if you decide to enroll later. Medicare will charge a 1 percent penalty, added to future premiums, for each month you delay.  And one more reason to act: Free help is available, on April 19, at Charlotte's Senior Scam Jam. The Better Business Bureau Consumer Foundation launched Scam Jam five years ago to help elderly people avoid rip-offs. In its first year, it attracted about 100 people at the Charlotte-Mecklenburg Senior Center.  Since then, both size and scope have ballooned. With at least 1,000 people expected this year, it now includes exhibits of senior products and services and attracts high-profile speakers, such as N.C. Attorney General Roy Cooper and N.C. Secretary of State Elaine Marshall. This year, in addition to presenting scam-related topics such as identity theft and investment and insurance fraud, organizers have added a session on Medicare Part D. "We're going to say, if you haven't signed up, you need to," says N.C. Department of Insurance Deputy Commissioner Carol Obiol. "You need to look at your options and get in a prescription drug plan."  Volunteers equipped with computers will help seniors sign up. Bring a list of your prescription drugs so they can plug those into a Medicare computer program to find the best plan for you. The nation's first prescription drug plan for seniors has been hammered by critics, who charge that Congress should have negotiated lower prices with drug companies. Complaints about complexity are
also rampant. (In North Carolina, seniors choose from at least 38 plans offered by 16 insurance companies.) Despite those flaws, the fact remains that Medicare Part D is an improvement over many seniors' current coverage: nothing.

Senior Scam Jam

* WHEN: 9 a.m.-noon April 19.

* WHERE: Charlotte Merchandise Mart, 2500 E. Independence Blvd.
* TO ATTEND: Admission and parking are free, but you must register. Call (704) 927-8625 or e-mail Maryanne Dailey,
maryanne@charlotte.bbb.org  Provide name, address, phone number and number of reservations.

More Medicare Part D Info
North Carolina's Seniors' Health Insurance Information Program, toll-free (800) 443-9354,
South Carolina's Seniors' Health Insurance Information Program; toll-free (800) 868-9095.

U.S. Centers for Medicare & Medicaid Services: toll-free (800) MEDICARE (633-4227), www.medicare.gov (includes a plan finder to compare costs and plan details).

3) Plan D doesn't stand for disaster By MARK GANZ, Special to the Post-Intelligencer Seattle Post-Intelligencer, WA [4.4.06]   As the CEO of a large health insurance company and as a son, I have a lot of motivation to make Medicare Part D work. So I worry about "disasterizing" a program that has so much potential for good, yet many who are eligible are afraid to enroll. The first senior I talked to about Part D was my own mother, in my hometown of Spokane. We spent a few hours reviewing her options and found coverage that can cut her medication bill in half. This one-on-one experience prompted me to take that approach with Regence members. Since then, I and hundreds of Regence employees have met face-to-face with more than 17,000 individuals who need help to make Part D work for them. Despite all we're hearing about the very real difficulties some people face, Part D can save people money on prescriptions, and that comes straight from a trained senior volunteer who testified before the U.S. Senate Special Committee on Aging in early February. This 78-year-old Senior Health Insurance Benefit Assistance volunteer enrolled in less time than it takes to go to a free seminar. He used Medicare's Web site to compare plans and costs and coverage of his medications and his pharmacy, and he has been filling prescriptions without a hitch. Seniors he counsels "are often very confused by the publicity that tells them they should be confused." He meets with them one-on-one, walks them through the same steps he took on the Medicare site and dispels their confusion. His testimony squares with our experience. As Regence testified before Congress, the level of personal interaction makes a significant difference in how people experience Part D. Our early and aggressive outreach - to beneficiaries and pharmacists - has afforded a much smoother experience of Part D than we are hearing around the country. While Part D is working for millions, many have had problems. All the parties concerned - Medicare and states, insurers and pharmacies - are scrambling to find the right fixes. Here's hoping the posturing and finger-pointing won't scare off seniors as the first deadline nears, because early enrollees would recommend it by a 6-1 ratio, according to a poll by Ayres, McHenry & Associates. Those surveyed said 3-to-1 that the time and effort of evaluating the many drug plans were well worth it. As the senior volunteer testified: "In spite of all the real problems you are hearing about, Medicare D is a good thing for an overwhelming portion of those eligible." It is always tempting to focus on flaws or assign blame, but the real challenge - to insurers and pharmacists, the media and congressional leaders - is to demystify Part D. Let's put people's needs ahead of paperwork and get people their medicine. We should pay the claims now and sort out the details later.  Part D is the only federal program we have to save people money on their medications. The need is urgent. As with any public issue, media and congressional attention are good at creating heat and holding the responsible feet to the fire. But let us not scare seniors into shunning Part D for the sake of a snappy sound bite. Mark Ganz is resident and CEO of The Regence Group, parent company of Regence BlueShield, with about 1 million members in Washington.

4) Many seniors remain uncertain about Medicare prescription plan By LEN MANIACE Journal News, NY [3.4.06]
NEW ROCHELLE - Seniors nursed their coffee at the Thru-Way Diner as Gary Summers launched into his sales talk on the Medicare prescription drug plans offered by his company, Oxford Health Plans. By the time the seniors began lifting croissants, bagels and forkfuls of scrambled eggs to their mouths, Summers had used the word "confusing" four times to describe the prescription drug plan fashioned by Congress and President Bush in 2003 that took effect in January. Six months after the federal government started a massive marketing campaign to sell the prescription drug benefit to the nation, and less than two months before the enrollment deadline, millions of seniors are still mystified by the coverage known officially as Medicare Part D.  One of those not yet signed up is Donna Hewlett, a 66-year-old Mount Vernon resident and retired secretary at St. Barnabus in the Bronx. After carefully following Summer's talk two weeks ago, Hewlett was not impressed. She remained puzzled over which of the 60-plus plans available in Westchester County would best fit her needs.  "I thought it was a pretty great idea until I started receiving all this information in the mail," said Hewlett, referring to the information packets touting the coverage. "It makes you want to go back to work again." Hewlett is healthy and takes only one prescription regularly, a thyroid drug. A bout with pneumonia earlier this year, however, brought home the need for drug coverage. And the approaching May 15 deadline, which carries a penalty of increased premium costs for those who are late, has made the matter even more urgent. Those who miss the deadline won't be able to enroll until Nov. 15, won't receive coverage until January, and will face a 7 percent cost increase for Part D coverage as long as they remain in the plan. "The penalty seems so unfair, like a punishment," Hewlett said. "Why should they want to punish somebody? We're not children." What makes choosing a plan so difficult, experts say, is the large number of variables that must be calculated to determine the best plan for each individual. Unlike standard Medicare benefits, the federally subsidized insurance companies that offer Part D are free to set their  own deductibles and co-payments, and decide which drugs are covered and to what degree. "I've seen cases where there is a $600 cost difference between two plans, and other cases where there is no difference in actual cost to the senior, even though one plan may have a monthly premium of $20 and another might be $50," said Jeanne Pici, who coordinates Medicare services for the Westchester County Department of s [?] and Services. At a news conference in Washington late last month, federal officials said they were pleased with the pace at which Medicare beneficiaries were enrolling and said the program was succeeding. They said complaints had declined significantly since Part D's tumultuous start, though some senior advocates warn of another round of problems starting early this month. On Saturday, a 90-day transition period that allowed patients to continue with previously insured medications, expired. In New York, however, the transition period has been extended at least through the end of this month. "Seniors are seeing the real benefit that Part D offers," said Health and Human Services Secretary Michael Leavitt. "On average, seniors who did not have a drug plan before are saving more than half their drug costs." But Robert Hayes, executive director of the Medicare Rights Center in Manhattan, said the plan was too expensive and had left millions without coverage. In some cases, Hayes said, Part D actually had reduced coverage, notably for the 6.4 million who previously had medications paid for by Medicaid but were switched to Medicare. "We're not diminishing its importance for the older person in Yonkers who is now getting access to medicine, but for the hundreds of billions of dollars we are sinking into this program, it is an absolute disgrace," said Hayes, an Edgemont resident. Federal officials say Part D is expected to cost $678 billion in its first 10 years. Frank DiDomenico, a retired transmission shop owner from Briarcliff Manor, also was uncertain about Medicare Part D as he sat sipping coffee and chatting with the seniors at the Thru-Way Diner before Summer's talk. Afterward, he was leaning toward one of the several plans Summer touted. DiDomenico continued his homework and recently said he was ready to sign up with an Oxford plan. Unlike Hewlett, DiDomenico has serious health problems and last year faced prescription drug bills totaling more than $3,000 for eight medicines. Within the past four years, he suffered a heart attack and was diagnosed with emphysema and, later, lung cancer. The series of ailments forced DiDomenico, now 64, to shut down his business several years ago and qualify for Medicare as a result of disability. On the whole, DiDomenico said, he feels good about his choice, an option that would bundle all his Medicare coverage, including drug benefits, in a managed-care program. "The plan covers four of my six doctors and that is important to me," DiDomenico said. He will have to give up the physician he has seen since 1963, though, because the doctor is not covered by the insurance plan, a painful decision for DiDomenico. "He is 70," DiDomenico said, "so I guess he's probably going to retire soon." Betty Sicher, 72, Spring Valley, part-time nurse Then: She was uncertain about signing up for Part D, even though she might save about $200 annually. Sicher already obtained most of her drugs at a discount; four of her five prescriptions came from Canada, where medicine is much cheaper. But the federal Food and Drug Administration says that is illegal. Now: "I'm not going to do it. I've done some more investigating, and the insurance companies do not supply all the drugs I need. If I need to purchase it and it's not covered, I won't get credit toward the deductible." Fred Barksdale, 71, New Rochelle, retired postal worker Then: He was confused about the choices, although with $180 a month in costs for eight prescriptions, he also would seem likely to benefit by signing up for Part D. To keep his costs down, Barksdale would start skipping one pill a day halfway through each month. Now: Barksdale has drug coverage through his health insurance as a retired postal worker that is considered at least equal to Part D benefits. The monthly premium on that coverage has increased from $80 to $110 per month. Even though there may be cheaper options, Barksdale said he was likely to stay with his current insurance. "It is still confusing. There are so many different stories that you are getting. I really don't know what to do." Learn more Seniors and the disabled on Medicare who have not signed up for a prescription drug plan face a daunting decision: more than 60 different plans in Westchester and Rockland, and about 50 in Putnam, each varying in price, co-payments and prescription drugs covered.

Westchester - Help is available at 11 locations around Westchester through the county's Department of Senior Programs and Services. Counselors will help seniors find insurance plans that best meet their needs. Walk-in sessions are available at the Grinton I. Will Library, 1500 Central Ave., Yonkers, from 10 a.m. to 1 p.m. Mondays, and at the New Rochelle Public Library, 1 Library Plaza, from 1 to 4 p.m. Tuesdays. More sessions at other locations around the county are available by appointment only. Call 914-813-6100 from 8:30 a.m. to 4:30 p.m. Take your Medicare insurance card, list of prescription medications and dosages and the name of your usual pharmacy. The county also will have a Medicare Part D enrollment fair from 10 a.m. to 2 PM April 26 at the County enter on Tarrytown Road in White Plains.

Rockland - Individual counseling on picking the right plan is available at the Nyack, Stony Point, Haverstraw and Garnerville libraries on a weekly basis. The Rockland County Office for the Aging expects to add more libraries soon. Take your list of medications and dosage. Session times vary. For information on days and times, or any other questions about Medicare Part D, call 845-364-2118 from 9 a.m. to 5 p.m. Questions and requests for help can be left on the office's answering machine - 845-364-2733 - at any time. The office's experts on Part D also are appearing at senior centers and other locations to discuss the prescription benefit.
Putnam - Counseling on plans is available from the Putnam County Office for the Aging, at the Donald Smith Campus, 110 Old Route 6 Center, Carmel. Call 845-225-1034, Ext. 100. Federal, state and nonprofit experts on Medicare Part D are to participate in a seminar April 19 at the Putnam National Golf Course, 187 Hill St. Mahopac. Call 845-225-1034, Ext. 100, for reservations.
* For other help, call 800-MEDICARE, and press 0 to reach a live person, or visit
5) Favorable Medicare access   EDITORIAL  Washington Times, DC [4.4.06]
Saturday marked the end of the three-month transition of the Medicare Part D prescription drug coverage to private insurer formularies. Critics clamored that the switch to the new formularies was certain to create access problems and leave patients without the prescription drugs they need, but the facts do not support these dire predictions. The Center for Medicaid and Medicare Studies analyzes formularies to ensure that the drug lists are not too restrictive, and that each formulary includes at least two drugs in each category, determined by widely accepted classifications. (Two drug options represents the minimum, according to CMS formulary guidelines, and more than two may be required "where additional drugs present unique and important therapeutic advantages in terms of safety and efficiency.") If a necessary drug is not included in an insurer's formulary, patients have been promised a timely ruling on their application for a formulary exception.  That there are simply too many plans for seniors to understand and evaluate their options is another common charge from opponents. Even with the myriad prescription drug plans open to beneficiaries, however, seniors are not overburdened by choice, two recent surveys demonstrate. The surveys, sponsored by America's Health Insurance Plans, show that of seniors who signed up for the Medicare drug benefit, the vast majority (84 percent) had no difficulties enrolling. And finding the right plan is worth the effort of shopping around, two-thirds said. For those who were automatically enrolled, 90 percent had little difficulty receiving their prescription drugs. Through competition between providers, the Medicare prescription drug coverage seeks a balance between reining in the cost of prescriptions and encouraging pharmaceutical advancement. The benefit has been successful cutting the cost to consumers, with average savings of 57 percent with the lowest-cost plan and up to 42 percent with the median plan. As well as lower out-of-pocket expenses, overall growth in drug spending is expected to be slightly less under Part D.  The market-driven nature of this program doesn't force drug prices to unsustainably low levels, which would impede medical progress, the way that a government-controlled "single payer" system might do. The success of Part D is crucial, as the effectiveness of empowering consumers to choose between competing plans will shape future reforms to the Medicare system.
6) Survey: Seniors like new prescription plan  By STAFF  United Press International [3.3.06]
WASHINGTON, April 3 (UPI) -- The Washington-based, Medicare Rx Education Network says a survey indicates 4-of-5 seniors polled like the new Medicare prescription plan. The survey, commissioned by the network and conducted by KRC Research, showed a majority of seniors report feeling better off than they were before and that they are saving money. The network, a coalition of 79 national organizations, is led by former U.S. Sen. John Breaux, D-La.  The telephone survey of 896 people age 65 and older who are enrolled in Medicare Part D was conducted March 15-20 and has a margin of error of 3.27 percentage points. "The survey shows that seniors who have enrolled are finding the benefit worth the time and effort that it takes to check out the plans and sign up," said Breaux in a statement.

 7) Citing Low Reimbursements, Calif. Pharmacist Leaves Medicare Drug Plan  By MARY AGNES CAREY  CQ HealthBeat [4.3.06]
A California pharmacist said Monday that he has left the Medicare drug program because of reimbursements that are so low he is losing money. Richard Burge, chief executive officer of Baneth's Pharmacy in Menlo Park, Calif., said that since Jan. 1, reimbursements from the Health Plan of San Mateo for two health plans, Medi-Cal - California's Medicaid program - and Care Advantage - a Medicare drug plan - have dropped so much that he stopped filling prescriptions for their beneficiaries as of April 1. While federal officials have praised community pharmacists for their work with helping Medicare beneficiaries understand the new drug benefit, some pharmacists have complained that low reimbursement rates and payment delays as a result of the new benefit might force them to close their doors. (See related story, CQ HealthBeat, March 30, 2006). "I've finally decided I've had enough," Burge said in an interview, adding that he has gone $75,000 into debt because he has continued to fill prescriptions for his patients while payments from MedImpact, the pharmaceutical benefit manager hired to administer both plans' drug coverage, have been reduced and delayed. "What we are being reimbursed on average for prescriptions that include Medicare beneficiaries are not even a third of what it costs us to fill the prescription," Burge said. He said his pharmacy lost about $7 for every branded drug and even more on generics. "This doesn't keep the lights on, this doesn't pay salaries, this doesn't pay insurance," Burge said. Medicare and Medicaid prescriptions covered by the plans account for as much as half of the pharmacy's business, he said. Overall, prescriptions make up about 95 percent of the store's revenue, he said. "That's our core business." Customers who now have to go elsewhere are "very upset," Burge said, adding, "This pharmacy has been here since 1959." The Pharmaceutical Care Management Association, a trade group representing PBMs, said that PBMs are helping Medicare beneficiaries save 35 percent on medications purchased at retail pharmacies and 46 percent for drugs dispensed through mail-service pharmacies.  "Job number one in Part D for Medicare drug plans, drugstores and other stakeholders is to save money for seniors and make sure they have access to the drugs seniors need," the group said in a statement. "On that score, we are making significant progress." Calls made Monday to MedImpact for comment were not immediately returned. Due to poor reimbursement, Burge said he is thinking of dropping his Medicare business in other areas as well, such as diabetes supplies and other medical equipment. "They don't care," he said of the Centers for Medicare and Medicaid Services (CMS). "There's no one to pick up the phone when I call." CMS spokesman Peter Ashkenaz said agency officials were "sorry to see when a pharmacist has to make a business decision to leave the program." Health plans offering Medicare drug coverage, he said, must make sure that beneficiaries have access to pharmacies in a particular area . Separately, proponents of the drug benefit on Monday released a survey that found four of five seniors who have voluntarily signed up for the program are satisfied with their coverage. The survey, conducted for the Medicare Rx Education Network, found that 87 percent of those who voluntarily enrolled in a stand-alone drug plan reported that the new prescription drug benefit worked well. Nearly 60 percent of those who had not enrolled, however, said that choosing a plan is difficult and about half of those actively looking said they did not have enough information to decide.
8) Johnson to battle rival over prescription drugs  By JEFFREY YOUNG The Hill, DC [4.4.06]
Rep. Nancy Johnson (R-Conn.), facing steady criticism from her Democratic challenger over her prominent role in creating the controversial Medicare prescription-drug benefit, plans to use a subcommittee perch to speak out in defense of the program. Johnson's chairmanship of the Ways and Means Committee's Health Subcommittee will provide her with an opportunity to highlight the benefits of the new program, called Medicare Part D, but will also give committee Democrats a public forum to air their grievances. "We intend to hold a hearing on implementation of the Part D benefit to focus on the steps [the Centers for Medicare and Medicaid Services] is taking to encourage beneficiaries to sign up," Johnson wrote Medicare chief Mark McClellan last Monday. Neither Johnson's panel nor the full committee, chaired by Rep. Bill Thomas (R-Calif.), has held hearings on the Medicare drug benefit this year. Rep. Charles Rangel (D-N.Y.), ranking member of the full committee, and Rep. Pete Stark (D-Calif.), the subcommittee's ranking member, have repeatedly requested an oversight hearing on the drug benefit. The two other committees of jurisdiction, Senate Finance and House Energy and Commerce, convened one hearing each in February and March, respectively. But if a Ways and Means Committee or Health Subcommittee hearing were to take place, it would not be until shortly before, or even after, the end of the enrollment period for the drug benefit. Medicare beneficiaries have until May 15 to choose a drug plan. Democrats have called for an extension of the sign-up period, citing problems that many senior citizens and disabled people have encountered joining a plan. A Ways and Means Committee spokeswoman said that the panel's schedule would permit a hearing no earlier than April 25. State Sen. Chris Murphy (D) has made the early problems with the implementation of the drug benefit a big part of his campaign to unseat Johnson. Murphy also points to Johnson's history as a favored recipient of healthcare-industry campaign cash. According to PoliticalMoneyLine, which tracks campaign finances, Johnson's campaign received more money from healthcare interest groups than from any other source last year, Out of $1.3 million raised in 2005, they accounted for $391,699. Individual contributions totaled $533,257. Murphy raised $419,556 last year. Healthcare interests contributed $2,000, PoliticalMoneyLine reported. His biggest contributors were labor unions, with $34,500. Johnson has steadfastly defended the drug benefit since it was enacted in 2003. Her congressional and campaign websites prominently promote the program and Johnson's role in drafting the bill that created it.  The websites also highlight emerging news that the pace of beneficiaries signing up appears to have quickened and point to media accounts of seniors and disabled people on Medicare who are now saving money. "Nancy is a nationally-renowned leader on health care and was instrumental in passage of a $400 billion expansion of the Medicare program, which will now offer for the first time prescription drug coverage to all seniors in America," reads her campaign website. Johnson's congressional office did not respond to a call for comment. Johnson's letter to McClellan requests information about how the agency plans to improve its outreach to beneficiaries for next year's sign-up period. She asks McClellan to reply by April 21, which is 24 days before time runs out for beneficiaries to sign up for drug coverage this year without being subject to a financial penalty. "It certainly seems that Congresswoman Johnson and her committee have waited until they can do very little to help seniors" this year, Murphy remarked. "Seniors in Connecticut have been screaming for help since last fall." Murphy said holding a hearing so close to the end of the sign-up period would be "a bit cruel" to those who have had trouble enrolling. The panel's Democrats also remain skeptical of the majority's plans. "You can pave a lot of roads with good intentions, but I'm not going to hold my breath waiting for Republican oversight," Rangel said in a written statement. "As a prime committee with jurisdiction over Medicare, I would expect us to take a leadership role in overseeing implementation of this program. Instead of leadership, we've seen denial and delay, but they can't keep their heads in the sand forever." Johnson has made a number of moves this year to burnish her image as a centrist. Murphy and the Democratic Congressional Campaign Committee have attempted to tar her as a "rubber stamp" for the GOP leadership and an increasingly unpopular President Bush. Johnson has taken sides with other Republican centrists against spending reductions in Medicare, Medicaid, education and other programs as part of this year's budget resolution. Last year's budget resolution laid out reconciliation instructions that led to $4.7 billion less for Medicaid and $6.4 billion for Medicare. Johnson voted for the House version of last year's budget resolution but against the conference report. She voted against the House version of the budget-reconciliation bill but in favor of the conference report.   melissa smith edelman public relations 1875 eye st. nw, suite 900 | washington, dc 20006  p: 202.326.1726 | f: 202.371.2858 | c: 217.493.6251


Lobby Day 2006 (Reminder)


We want YOU to join us in Washington, D.C. on May 8-9 for the CFIDS Association of America's 14th Lobby Day on Capitol Hill. This year's event is extra-special because we'll be introducing members of Congress and their staff to the CFS awareness campaign http://www.cfids.org/cfidslink/2006/pac.asp, in addition to talking with lawmakers about funding for research and treatment centers, disability and education issues.

Please consider joining us for this year's event. We recognize that for many people affected by CFIDS, limitations imposed by health, strained finances and other responsibilities make it impossible to consider traveling to Washington, D.C., so we are extremely grateful for the efforts and sacrifice that participants make to take part in this experience. As the date approaches, we'll have a "virtual lobby day" through CFIDS Link and our Grassroots Action Center http://capwiz.com/cfids/home, enabling those who can't be with us in Washington to augment the impact of what advocates are able to accomplish in person on Capitol Hill.

For further details or to register, visit http://www.cfids.org/advocacy/Lobby_Day_2006_Info.pdf our lobby day packet, send a message to LobbyDay@cfids.org or call the Association's Resource Line at 704-365-2343. The deadline for registration is Monday, April 17.

Exciting Info    Update                                                                http://www.cfids.org/cfidslink/2006/pac2.asp

CFS Public Awareness Campaign: Countdown to the Launch

Famous fashion and celebrity photographer George Lange photographed eight CFS patients and noted CFS experts Dr. Anthony Komaroff and Dr. David Bell for the traveling photo exhibit. Photo shoots took place in Atlanta, Boston and New York City in February.

The launch of the CFS public awareness campaign has been set for June 7 at the National Press Club in Washington, D.C. Members of the national media will be invited to the press conference announcing the kickoff of the campaign, which will extend throughout 2006 and 2007.

With only eight weeks to go before the June launch, work on various campaign components is in full swing. The photographs for the traveling photo exhibit, “The Faces of Chronic Fatigue Syndrome” have all been taken by renowned celebrity photographer George Lange. The photos are being printed on huge banners and paired with a quote from each of the 10 photo subjects to illustrate the impact of CFS on people’s lives. The exhibit will travel across the country, and work is progressing on scheduling venues to make sure that hundreds of thousands of people have the opportunity to see the exhibit, learn about this illness and how it impacts lives.

The television PSA was shot in Los Angeles in March. It took three days for preproduction and filming for the 30-second spot, which was shot in three separate locations. The three scenes will illustrate a typical day in a CFS patient's life.

We're also moving forward on the television public service announcement (PSA). After hiring a director, photographer and cast, the 30-second spot was shot in March in Los Angeles. This month, the editing and voiceover will be completed and music will be added to the PSA under the guidance of GMMB, the advertising firm the Association hired to work on the campaign. Then the PSA will be duplicated and sent to hundreds of television stations throughout the country.

On another front, GMMB and the CFIDS Association have been working on the print ad for the campaign. Copy has been written, the photographer hired, the location scouting completed and the ad shot. The full-page color ad will appear in selected national magazines from July through November of 2006.

Educational materials are also in development. A CFS brochure for patients, a toolkit for health care professionals and a new CFS website are all being written and designed. The brochure and toolkit will be available both in printed and downloadable versions so that more people will have access to them.

The $4 million CFS public awareness campaign is a collaborative project of the CFIDS Association and the Centers for Disease Control and Prevention (CDC). It’s being funded by the CDC to educate the general public and health care professionals about CFS.

We're in the final countdown — look for an update on other prelaunch campaign activities in the spring 2006 CFIDS Chronicle and the May CFIDSLink.


NJCFSA Conference    (reminder)
Each year the NJCFSA (our parent organization) has presented conferences in the spring and fall of each year.  Much to the disappointment of the Board of Trustees, the spring conference did not occur.  The singular reason was the lack of a committee to organize the event.  The fall conference is now in the planning phase.  The date has tentatively been set for Sunday October 10th.  Judy Machacek has compiled the following committee list in an effort to share the work.  If you might be able to help in any way, Please contact Judy (judymachacek@msn.com  or 201-836-7391).  We all know that we manage our illness best when we share the load.


Conference Project for Sunday October 22, 2006.


Registration: of Attendees

Coordinator: to work with Hospital and Hotel, re: room and food arrangements

Brochure: creation/design and distribution

Equipment :coordination of equipment needs for speakers, etc.

Video capture: find inexpensive service or student to DVD record and edit conference

Advertising:  Obtain advertisers, and notify newspapers, etc.

Mailing and Distribution: Attach labels and stamps, hand out to other prospective attendees

Exhibitors: Find exhibitors to pay to be at Conference for a fee

CFS Exhibit Support:  Work with Pres. Peg Walk to hand out CFS brochures, etc.

Printed Materials: Work with speakers to prepare handouts: and agenda for meeting

Day of Conference Coordinators:  help with speakers, registration, etc.


There will be several people on each committee and no one will be asked to work alone or without assistance from me. Thanks to all in advance.   Judy

Next Meeting

The next scheduled meeting will be on Sunday May 21st.  We hope to see you.

This newsletter is intended for CFS patients in the area of this support group.  The purpose is to share information and support.  If you have questions about meetings please contact Group Leader Anne at annielaurie617@yahoo.com.  Subscription problems: Nancy Visocki at nvisocki@verizon.net. Editor: Pat LaRosa at pat@larosas.net.