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BENEFICIARY FORUM
 

Your Letters - Read letters submitted by beneficiaries, their families, and those helping them
Speak Out - Write us about how Medicare works for you.
Volunteer - Help educate and advocate. 
Contact Us - Get more information from us, or offer more about yourself.

A recent survey by the Kaiser Family Foundation and the Harvard School of Public Health found that while younger adults - who have no experience with Medicare - favor the current trend of moving Medicare into the private sector.  Seniors - those who actually utilize Medicare - favor building on the current Medicare program.  Eighty percent of the seniors surveyed had a favorable impression of Medicare, and over seventy percent favored coverage through traditional Medicare rather than through private plans.  Sixty percent think that prescription drug coverage would be best delivered as part of the traditional Medicare rather than through private insurance companies.  These opinions need to be heard by those crafting Medicare reform.

The Center For Medicare Advocacy Beneficiary Forum is a place where Medicare Beneficiaries can make their voices heard, organize, and act to preserve an ongoing Medicare program that is uniform, guaranteed, and available to all who qualify for Medicare.  Those who actually use the Medicare program, and all its positives and negatives, are those who best know the Medicare program.  YOU, the beneficiaries deserve to be heard.  In this forum you can submit letters and Medicare stories, volunteer to speak with the press or to groups involved in Medicare and Medicare reform, or help contact your government officials on issues around Medicare.

The forum is led by Joan Shapiro, a medicare beneficiary and a volunteer with the Center for Medicare Advocacy who wants to make a difference.  Ms. Shapiro may be reached here through the Speak Out and Volunteer links.

A press release describing the Kaiser/Harvard survey is available at http://www.kff.org/content/2003/20030619a.


LETTERS FROM BENEFICIARIES, ADVOCATES AND OTHERS CONCERNED WITH QUALITY HEALTH CARE


May, 2007

I work for a Medicare Supplement Plan & I constantly hear stories from our members or former members about the copays they have to pay & the lies they were told to get them on an Advantage Plan.

We've had them sit in our office with tears streaming down their face wanting their original Medicare back only to find out that they are locked in until the end of the year. One lady needed an MRI & she said she already owed the hospital so much she couldn't afford it. The coinsurance alone would be about $400 not counting the doctors fees. All of them tell us they're better off paying a set premium for a supplement every month & keeping their original Medicare.  Actually they would be better off with original Medicare & no supplement than they would be with a Medicare Advantage Plan. One lady said a $15 copay at the doctors office doesn't sound too bad but that's just the start of it. The bills start rolling in for the lab, the x-ray, the radiologist etc.

I think this is the worse plan the government has ever come up with. The advertisement has got people thinking they have to take one of these plans. These HMO's were tried with the younger working people 10 years ago & they hated them so now it's being put on our elderly. I get very upset over this & tell anyone who will listen. I've written our Senators & anyone that I can. It's very easy to get on these plans but takes an act of congress to get off. It doesn't seem fair they can sign up for an Advantage Plan all year long but can only get off at certain times of the year. The dates they can get off are not clear either. One representative at Medicare will tell them one thing & they can call back & get a different rep & the answer is different. Let's help our seniors!!

Judy C.
Huntsville, AL


April, 2007

...I see  all the ads paid by big Pharm, that say that 90% of American's are satisfied with the coverage provided and to vote against any change. I'd be real curious to know whose behind that and  to let them know that the other 10 % of the people's voice must be heard. (I actually thought it was only 85%, but stats will vary with the polls.) I think it's unacceptable that even if it were 10% of people that aren't fully covered. According to the CIA's population count we have 301,139,947 people living in the US. The census bureau estimates that 1 in 8 Americans were elderly in 1994, but that estimates show 1 in 5 by the year 2030. This doesn't even count the disabled, which I'm sure are ever more affected by the donut hole gap, as many like me are not in the lower income category, but yet are struggling with the expense this imposes...

...During the time I had originally contacted you, I had also written in a form of e-mail or fax to EVERY house member and EVERY senator, at my own expense. I hoped to make them aware of the urgency of the situation, although many replied with the standard, "we can't accept this because you're not from our state" response. I'm sad to see that after the House rushed this along in their 100 hour agenda, this has sat in the Senate, and gone no where. The President's promise to veto this should it hit his desk, has also followed. All common facts that I'm sure you're all aware of, but nonetheless, this all gives me cause to promise again to get further involved.

If I may ask a question: Is there a backup plan? Should this pass the Senate (as HR4 already passed the House), the President veto this, and the veto fail to be overturned by Congress, then what? Is there another plan? Who else can be approached? Can the insurance companies be approached? I understand that this is difficult because many are already offering to pay for medicines when people in the lower income category can not afford it, but what about those that fall into the category that I'm in. Then what? This years out of pocket expenses were devastating, and I don't know how we did it. Actually much of it came by diverting other necessary things, and juggling bills which really shouldn't be juggled. I'd like to figure out another alternative, as we need a long-term solution for a long-term problem.

Thank you for your time and consideration to hear (read) my thoughts, as well as your commitment to this cause.

Ruth Cruz
Hampton Twp, NJ


October, 2005

I am a Resource Advocate for Seniors and work for Catholic Social Services. The majority of my seniors, that I call on in home visits, are low income. I also attend two different senior centers on a regular basis to assist seniors.

The new changes coming to Medicare have been very confusing for my clients. They are frightened to death that they will not be covered for their medication. At present a good one third of my clients are presently not taking their medication because of the cost.

The Legislators, who have designed this new change to assist seniors with drug costs, have no idea how many seniors out there have absolutely no idea that this program exists, let alone have someone to explain it to them. I have decided that the Legislators will never know what an impossible situation this has been unless they themselves have experienced a parent or loved one who is elderly, infirm, and in need of assistance. Unless they are the actual caregivers they cannot relate to the situation of explaining the complicated formularies for medication.

I have encountered seniors who have thrown the screening guide away thinking it is junk mail. I have seniors who start to read the letters sent to them, regarding the changes, and just give up reading it because it overwhelms them.

My concern is that I am able to reach as many seniors as possible. But who is going to care for all of those left alone in their homes or apartments with no family assistance or outside help. Who will assist them and how will they benefit from this program?

And they will be penalized 1% per month for every month they do not join the Medicare program.

This program was rushed through without enough consideration for the elderly.

Sincerely,

Patricia Flynn,
No Address Given


Regarding: The April 24, 2005 New York Times article by Robert Pear, "Medicare Change Will Limit Access to Claim Hearing"

Ms Stein stated: "The videoconferences are one of many changes that will reduce the beneficiaries' ability to get fair, favorable decisions. Sick, old and disabled people can be much more effective in person because the judge can see their illnesses and infirmities - how they walk, how they get up from a chair, how their hands shake with tremors."

I am 51 yrs. old and on S.S.D., and it was the face to face hearing with a Judge that allowed me to win my case... I was very sick at the time of my hearing, and the Judge could see for himself how I was doing... There is absolutely no way the Judge who was hearing my case, could have fairly assessed my condition thru this proposed videoconferencing format...

Actually, if I had to go through my hearing via this proposed videoconferencing, I would have probably lost my case... The Medical problems I have are not the usual problems a Judge might see... I have a laundry list of medical problems, and it is the sum total of these problems that make me disabled... and it was the fact that I have a major Learning Disability (visual processing speed of 9, the average is 80), that was the deciding factor in my case, as it renders me incapable of independently working from my home...

Please allow me to assist you, should you find the need to line up people to testify!

Gary Stonecipher,
Syracuse, NY


An opinion piece on recent Medicare changes and attempts to shift focus regarding those changes.

"Bush Administration Plays Politics With Obesity" (PDF File) - Theodore S. Marmor, Newsday, August 17, 2004 (reprinted with permission of the author)


September 17, 2004

I consider myself to be a fairly well informed person. I spent a GREAT DEAL of time researching these [Medicare prescription drug discount] cards.  I am also eligible for ConnPACE, a program in CT that pays Rx costs for people of low income.  My health insurance plan is a Medicare/PPO.  They put out a discount card as well.  I got their card.  However, getting my questions answered took forever.  Getting the affirmative letter confirming my eligibility for the card and $600 credit took until August!  My health insurance plan, ConnPACE and Medicare all gave different answers.  They did not speak a common language. When I was trying to learn how much the cost for my medications would be, some gave a price, others the discountI have over five prescriptions, and the web site (www.medicare.gov) will only allow one to enter four.

At one point I attended a workshop with an aide of Rep. Chris Shays about the cards.  They were willing to look into my questions to try to resolve them.  A few days later, I finally got my letter confirming eligibility.  I told them how things had been resolved, but asked they continue to urge people to speak the same language.

I wrote a letter to ConnPACE and the Stamford Advocate about my frustration.  The eligibility of ConnPACE persons is due to low income.  I probably misunderstood, but got the impression that the additional $600 credit would be automatic.  People responded to my letter, saying they never indicated any such thing!  If I had known about the need to apply for the financial eligibility earlier, I would not have waited until August to apply!

Leslie Weinberg
Stamford, CT


September 8, 2004

I'm just an individual consumer who thinks your organization and the work you do to help seniors is the greatest. I receive [your] Weekly Alerts and sometimes pass them on to Sam Deibler, Greenwich Commission on Aging.

Having read about the Formularies, I'm passing along my thoughts and experiences. I currently have Retiree Drug coverage. I pay 20%, the company pays 80%.

Until Jan. 1, 2004, I purchased my drugs at a local store and submitted the bill for reimbursement. Now the company has switched to CareMark and I must send for maintenance drugs. CareMark sends the formulary they dispense and it is not always the cheapest or one that agrees with the patient. Fortunately, I only need 2 or three and they are not too expensive if I have to pay for them myself.

Example: I take [Drug A].  Those that I purchased locally are manufactured by GRE, probably abbreviation for Green. These never upset my stomach or give me any problem. Those sent by CareMark mfg. by PAR give me such an upset stomach that I refuse to take them.  I'm buying what I've taken for years at my local CVS and paying the total cost myself.  Both are generic but probably have different fillers.

Next are [Drug B and Drug C]. I was started on [Drug B] over 30 yrs. ago. Since then generics have hit the market as well as a couple of name brands. Most Doctors advise that you continue to take what you were started on and do not change.  My first order from CareMark was [Drug B].  The refill and its accompanying letter said, "[Drug D], (generic) substituted for [Drug B]".  However, I noticed on the bottle that the Mfg. is Abbott, the makers of [Drug B]. Inspecting the tablets I see that they are stamped, [Drug B]! This so called, "generic", which is actually [Drug B] is cheaper.  For my next order I will have to have a new prescription. I can request my Doctor to check, "Dispense as written", to make sure I get [Drug B] and pay more or take a chance that CareMark is going to send me [Drug B] disguised as a generic anyway.

My point being that one is never sure what they are going to get by mail.

CareMark has sent me [Drug C] but few Companies issuing the Drug Cards, (which I'm not eligible for nor want), carry it.

I also take prescription strength [Drug E]. All [Drug E] is generic and a 30 day supply only costs $9 at CVS. What CareMark sends costs a little more.  Since I only pay 20% I'm only talking pennies but what if it were an expensive drug?

This Medicare Act 2003 is the most costly and worst piece of legislation I've ever seen passed. We might just as well dispense with Doctors and let the Drug Companies with their TV ads and the Government tell us what to take. Hey, its a free Country, right? Unless you're 65 or older.

Just my thoughts.

Keep up the good work.

Peg Tischler
Greenwich, CT


March 25, 2004

Dear Ms Stein:

I am furious!  Today I received Tommy Thompson's letter and fact sheet about the Medicare Modernization Act.  Nothing but lies and half truths.  There is no address other than Washington, DC where one could reply.

Tonight, I'm subjected to more lies in TV ads paid for by Health and Human Services.  Quote from an actor in the ad, "So I can keep my same Medicare and MORE", which we know is not true.

How can we possibly repeal this law and restore the Medicare that has served us so well since its inception?  Adding a drug benefit for those that need it should not come at a cost of $550 Billion on the backs of all taxpayers and the dismantling of the cost effective Medicare we've had.  The cost of the Modernization Act at the time it was voted on by Congress was another lie.

I feel so helpless. Our Government officials and the President are not listening to us. I've written my Congressman, Chris Shays, many times on this subject but my words fall on deaf ears. He thinks this Act is just great and states that he is, "Proud", to have voted for it.  I've also expressed my dissatisfaction to my local Commission on Aging. What more can I do?

The Greenwich, CT Commission on Aging has published your, "20 Things you may not know...", in their quarterly bulletin for Seniors.

My sincere thanks to all of you at Medicare Advocacy for the wonderful work you are doing.

Peg Tischler
Greenwich, CT

(From the "Speak Out" section of our site)


January 28, 2004

To My Senators and Congressman:

I strongly believe that the so-called Medicare prescription drug plan signed by President Bush in 2003 is a disaster. It is an opening wedge to change Medicare as we currently know it. The bipartisan Senate-passed plan, though inadequate, should have been adopted instead. It would not have included the medical savings accounts experiment. Privatization of Medicare is a big issue that must be handled ALONE.

The passed plan includes $12 billion to subsidize private insurers, busting up the huge Medicare risk pool. Healthier and wealthier seniors will opt for the HMO approach, raising costs to the sicker and poorer seniors. The Medicare system with its large pool of patients is prevented from negotiating lower prescription costs from drug companies! This plan is a good deal for HMOs and drug companies.

It is time NOW to Īrepeal this plan, Ļget serious about a real prescription plan, and Štackle serious debate on the future of Medicare.

Gail P.
Connecticut

(Reprinted with permission of the author)


January 27, 2004

Lost in the rhetoric about the Medicare reform bill was an interesting fact that is just coming to light.  According to a Jan. 8 Wall Street Journal article, part of the plan designed to encourage corporations to continue prescription drug coverage for retirees is a tax-free corporate subsidy of 28 percent of the costs of providing the coverage.

Well and good you say?  Get this: The 28 percent subsidy is calculated on the total cost of the drug coverage, including that part of the cost paid by the retiree.  According to the Wall Street Journal, a host of consultants has sprung up to explain to corporations how they can make money on providing the coverage.  Corporations can do this merely by charging their employees a larger share of the prescription drug coverage.

Don't believe me?  Ask your members of Congress.  It probably would be most appropriate to ask Rep. Nancy Johnson, because this was a Republican plan and she is well known as a Republican leader in health care.

Is this another example of compassionate conservatism in the current administration?

Ritchard Cable
West Hartford, CT

(The preceding letter is reprinted with permission from the author.  It also appeared in the Hartford Courant, pg. A8,  on January 27, 2004)


January 22, 2004

I am contacting your web site because I have just read the informational sheet the Center has distributed called "20 Things You Should Know About the Medicare Act of 2003". I knew the Medicare reform bill was bad news for seniors. However, I had no idea how bad it was until now. I am absolutely outraged at the details of this new law. This will drive the costs for seniors up instead of down and will give more money and power to the pharmaceutical and insurance companies. I am a social worker in a private non-profit senior center and try to educate seniors about Medicare, Medicaid etc.

Christina Crain
Norwalk, CT


December 24, 2003

(The following is letter to Representative Rob Simmons from a Connecticut physician who permitted us to reprint it.)

Rep. Simmons:

Thanks for your information and reply to my email. I have already read your op-ed piece in the Courant, and have previously read AARP's position. Quite frankly, you and they "have it wrong". I have spoken personally with many of my over-65 patients these past two weeks and EVERY single one of them has voiced the following concerns (I have asked them to write to you):

1. The prescription drug benefit is minimal, and only a start (better than nothing, but "not real good").

2. The billions of dollars in payments to HMOs is ridiculous - HMOs were supposed to save Medicare money - so why are you committing this extraordinary amount of money to them and not to the traditional Medicare program? If the Federal Government has billions more to spend on Medicare, then let's spend it on hearing aids, eyeglasses, preventive care - that's what Seniors need.

3. All are suspicious of the fact that this does not go into effect until 2006 when many of you legislators will not be around to face the consequences of the voters - also CMS Administrator Scully is leaving (has left) for a high-paying health-care-related consultancy - after making these substantial changes. Why isn't he staying around to work with the program he helped create?

4. This 700 page bill (of which only a small portion deals with prescription drugs) destroys the very fabric which has made the Medicare program such a resounding success - it is not perfect, to be sure, and there is room for improvement, but this bill destroys the community of beneficiaries who now all share a common program with common benefits and common rules.

In 1965, prior to the enactment of the Medicare program, less than 50% of seniors had medical insurance coverage - now over 95% do. The private insurance model has failed in the past and most recently has failed with the massive pull-out of HMOs in Connecticut and elsewhere. This bill is a terrible mistake.

Kenneth R. Dardick MD
Storrs, Connecticut


I was interested in what the Center for Medicare Advocacy is going to do from here now that the bill has been passed and ready for signing. This is a travesty to our senior citizens. There is no way this will do anything but destroy the little health care that seniors now have. There are so many loop holes and so much money given to the special interests it is a disgrace. How will you inform the public of what has happened. How will you get people to realize we have to fight this injustice. We don't want anything for nothing, but there is a fairness that needs to be spread across society. The congress is arrogant as is the administration. It is our country not theirs alone. Please let people know how they can help spread the word before the next election. Thank You. 

L.  Rooney

(From the "Speak Out" section of our site)


November 20, 2003

I am concerned about disrupting my current benefits by getting involved here!

However, I am interested in taking action to prevent the new Medicare prescription drug bills from the Senate and Congress from raping the Medicare system.

I am disabled and on Medicare and I want to know what I can do to be proactive in this cause.  I am open to direction and suggestions.  Thank you for your effort and I look forward to hearing from you.

S. Henry

(From the "Speak Out" section of our site)


November 19, 2003

Dear Ms. Stein,

I'm listening to Diane Rehm's show and just heard you (I believe it's you) on the air. That's how I found your organization. You are the berries!

I am totally upset that AARP sold us down the river, exchanging a paltry payoff of drug coverage for permission to gut Medicare. This is merely the opening volley in a long campaign that will end in lots of money funneled to private insurance corporations and poor coverage for those of us who will be able to afford the increased Medicare premiums.

I do not believe for one moment that this so-called "prescription bill" has anything to do with prescription relief. That's just the cover for the real agenda.

Thank you for your fine work on my behalf. I feel fortunate to find someone who's speaking for me.

S.E. Young
New Hampshire


August 4, 2003

DON’T PRIVATIZE MEDICARE

As a Medicare beneficiary and one of Rep. Johnson’s constituents, I must disagree with Mrs. Johnson’s Medicare editorial. (Medicare For The 21st Century, August 3). Despite her assurances otherwise, it is obvious that the effort behind the House of Representative’s Medicare prescription drug bill is to fragment and privatize Medicare. One of Medicare’s best qualities is its universality. Like Social Security, it is a reliable program wherever you live; it is government at its best.

I would also mention that the gap in benefits that is part of the legislation would be very costly to beneficiaries. And the proposed plan is far from simple.

There is no reason why a fair drug benefit could not be tailored into the traditional Medicare program that has so benefited the people. Every contemporary I know finds it fair and easy to work with. So far, the changes that have been tried, i.e. managed care plans have proved more complicated and costly. Indeed, many private companies have withdrawn their plans. Obviously, most seniors prefer traditional Medicare care.

Tying drug benefits to competitive programs is almost totally for the benefit of the private insurers under the guise of reform.

Please don’t fix what is not broken!

Sincerely,

Joan B. Katz
Southbury, CT

(Previously published in the Hartford Courant)


July 20, 2003

A PLEA TO WASHINGTON: DON’T TRY TO "FIX" A VERY GOOD THING

After 25 years of paying close to $8,000 for private medical insurance each year, I was relieved to turn 65, and wondered how my life under Medicare would proceed. It is now 2? years later and I can still barely believe how much my medical and financial situation has improved under Medicare. Instead of constant bills and confusing letters (usually raising premiums or denying claims) I now receive clear, regular statements of monies paid on my behalf to the numerous physicians I've had to see. For the first time in my life, and when my health is the poorest, I feel in control of my health care bills.

The frightening plans both in the House and the Senate in Washington are dangerous throw-backs to the many years when I felt thrown to the wolves of profit-seeking drug and insurance companies. The projected plans, billed as "fixing" Medicare, are poor and far too complicated.

I am very troubled by the current threat to this peace of mind that I now enjoy and hope that other seniors will take an active role in speaking out to protect what is currently ours. I'm afraid that our politicians are playing a dangerous game - interfering with one of the nation's best programs. Please, don't let the profiteers back into the Medicare system. It definitely "ain't broke."

Joan Shapiro
South Windsor, CT


(Editor's Note: Ms Shapiro is a Medicare beneficiary and a volunteer for the Center for Medicare Advocacy.)


July 20, 2003

DRUG PLAN BENEFITS FIRMS, NOT SENIORS

President Bush and Congress are pushing to ensure that seniors receive a prescription drug benefit as an integral part of Medicare. Considering the progress that has been made in pharmaceutical research and development since Medicare was introduced 39 years ago, it is reasonable to provide medications that, in many cases, can avoid the need for costly hospitalization or prolonged illness.

But this case, it is prudent to look this gift horse in the mouth. Although the argument is that a drug benefit under Medicare will greatly reduce the out-of-pocket costs seniors must pay for medications, the fact is that only a small portion of the benefit being proposed would help seniors. The real beneficiaries are the drug companies (who are guaranteed direct access to the nearly 40 million Medicare members) and the insurance companies (who will be able to charge huge administrative costs to the government).

The only true Medicare prescription drug program would be one that is available to all seniors, affordable by taking advantage of volume buying and administered by the federal government.

Medicare has been a remarkable success story, relieving pain and suffering for seniors and handicapped citizens and providing them longer and better-quality lives. And it has done this at an administrative cost of less than 4 percent.

Make no mistake, the goal of this administration is to turn the Medicare program over to the private companies that, like the HMOs before them, will abandon us all when profit can no longer be squeezed out of the system.

David McQuillan
Avon, CT

(Previously published in the Hartford Courant.)


June 16, 2003

DRUG PLAN IS A SHAM

I thank Lillian Brown and Judith Stein for their letters exposing the flaws of the Bush proposal pertaining to the Medicare drug benefit [June 11, "Government’s Drug Plan Flawed"]. I see this as a sham designed to eventually do away with Medicare as we know it.

Unlike the plan that’s been proposed for the seniors of this country — who deserve much more — I’m sure members of Congress have a drug benefit that’s a lot cheaper, less complicated and does not deprive members of other benefits.

Fred A. Kesten
Middletown, CT

(Previously published in the Hartford Courant.)

 
 


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