In December 2005, the Medicare Rights Center launched a project to learn directly how people with Medicare are experiencing the implementation of the Part D drug benefit.
The submissions began pouring in. People from every corner of the country have shared their experiences with Part D. Many contributors told us similar stories of leaving the pharmacy without drugs, paying more for Part D drug coverage than they expected, and having trouble finding anyone to help them get their medications. Others are still waiting to hear about their application for Extra Help.
The following stories show that problems have continued into the fourth year of Part D. These stories represent some of the most commonly reported problems we have seen.
Thank you for sharing your stories. We are using your experiences to tell Congress and the administration in Washington what they can do to fix the problems with the Medicare private drug benefit. As promised, all submissions are being kept anonymous unless the Medicare Rights Center obtained specific permission.
Please read below to see what's going on across the country. The stories below do not represent the views of the Medicare Rights Center. They are the testimonials of real people with Medicare, caseworkers, and family members who submitted their stories, written in their own words. If you would like to share your experience with Part D, please click here.
Read people's stories by clicking on a topic below.
Doughnut Hole
Trouble Getting My Medicine
Problems with Extra Help
Can't Get Extra Help
Enrollment Problems
Paying More
Can't Afford My Medicine
Problems with Premium Deductions
Doughnut Hole
Roslindale, MA
I work as a resource specialist for the Hematology/Oncology department at a major teaching hospital in Boston. Each and every year there comes a time when all my Medicare patients come to me in a panic because they have hit their donut hole. Lately, because of rising drug costs, it has been happening earlier and earlier on in the year. It used to come up in September, but I have seen an increasing number of my patients enter the donut hole as early as March through June.
I watch as they try to decide whether to stop paying for their life sustaining medications or to cut back in other areas, such as food or rent. No one should have to face this decision, EVER.
(Submitted September 23, 2009)
Hull, GA
My husband is 62 years old and has been on Social Security Disability for seven years due to heart disease, arthritis and diabetes. He takes 13 prescription drugs daily plus aspirin to manage his health, including two injectable insulins. By the first week of March each year, he is in the "donut hole" and his medications cost between $800 and $1,000 per month until approximately the middle of June, when he has spent enough to move to the catastrophic category. We have used credit cards to do this and now the credit card companies are reducing our available credit and/or closing our credit card accounts because of the economy. Our house is now worth less than we owe on it, so there is no equity to tap to consolidate debt. We have not yet paid off last year's donut hole expense and are now adding $4,000 to it.
How are we supposed to pay for this? I can't make enough money to keep my husband alive and we do not qualify for any help.
I am terrified. I don't know how to do this.
(Submitted June 16, 2009)
Maricopa County, AZ
I fall into the doughnut hole in May of every year. I have several chronic conditions which require name brand meds. As a result I reduce the amount of meds I take which has often landed me in the hospital. This costs Medicare much more than my meds would have cost on their own.
Until there are changes in the laws governing Part D, I am stuck for meds without enough income to pay for them. Meanwhile day to day living expenses eat up what little money I do receive. My income barely exceeds the limits [for state aid] so there are no options besides limiting my dosages or not taking some of the meds at all. A disastrous situation.
(Submitted May 23, 2009)
Trouble Getting My Medicine
Brandon, FL
I believe my Medicare Advantage Prescription Drug Plan is dealing in deceptive practices. In December 2008 I logged on to the Medicare Prescription Drug Plan selection web tool for 2009 and entered the five drugs that I use. The web tool came back with a large number of plans that carry the drugs that I use. I selected a plan and enrolled online. They mailed me the proper paperwork and I signed up for the plan. During the first week of this year, I mailed my five prescriptions to them. They called to tell me that one of my drugs was not covered, even though the Medicare web tool indicated that they do cover all the drugs I needed. This is the classic bait and switch plan. The web tool said that they covered all of my drugs, yet when I sign on the dotted line they decline coverage. I had to buy the drug on my own. It costs $202.00 for 90 pills. In this free trade country the same prescription would cost half as much from Canada.
(Submitted March 29, 2009)
Problems with Extra Help
Northport, AL
I work with SHIP [State Health Insurance Assistance Program] in Alabama. In January of 2009 we were bombarded with callers who were dual eligible that were reassigned into PDP's [prescription drug plans] with a premium below the benchmark for our state yet the reassigned plans were very expensive. In other words, the plans are below what the LIS [Low Income Subsidy, also known as Extra Help] premium rate is but the reassigned plans did not cover the beneficiary's medications well. For example, one client had been reassigned to a plan that would cost him $8,039 for the year; another had been reassigned to a plan that would cost them $9,297. These people are on LIS and cannot afford this. I went to Medicare Compare and ran a comparison and found a plan that would cost them $200 or so for the whole year, which is appropriate. I enrolled them in the new plans, but the problem is that they do not go into effect until the following month. I wish there was a way during the Annual Coordinated Enrollment Period to help duals get a plan that covers their medications well so it will be an easier transition for the new year.
(Submitted February 13, 2009)
Can't Get Extra Help
Roseburg, OR
My 79 yr-old mother lives with my husband and I. My mother was receiving some assistance with paying her Part B and D premiums and now she makes $30.00 too much per month to get that assistance. In other words, by getting a "raise" of $30.00, she lost a benefit that was worth a minimum of $100.00 a month and a lot more than that if she needs more or more expensive medication. That is a TYPICAL scenario I have seen for the 25+ years I have been a Social Worker and privy to the private and quiet struggles of disabled and senior citizens.
(Submitted July 31, 2009)
Enrollment Problems
Indio, CA
My wife and I are insurance brokers who devote nearly all of our time in the individual health insurance business and the majority of that time is spent in the senior market throughout California. We have been doing this for the last 20 years after spending 15 years being primarily in the group insurance business. We really enjoy what we are doing.
When the government standardized the Medicare Supplemental plans it made things much easier for the consumer. We thought it was a very good thing. But Part D is a totally different story. Why the policy-makers didn't follow the same simplified plan-standardizing concept is something we can't figure out. As it is, it's way too confusing for the consumer to figure out. It can be confusing to us at times. It is easy for us to understand why bad choices are being made by consumers. We have found that the people that are publicized as being available to help the consumer are not as informed as they should be, especially when it comes to plan selection.
(Submitted March 13, 2009)
Paying More
Williamsburg, VA
I refilled my prescription for insulin about a week ago just after New Years Day. The cost between December and January had increased from $188 to $239. At that price, I will reach the doughnut hole even earlier than I have in the years since Part D was passed. I don't know what to do. It seems that the drug companies are raising their prices in anticipation of changes in healthcare law.
(Submitted January 12, 2010)
Pinckneyville, IL
My partner and I both enrolled in a Prescription Drug Plan from Walgreens in 2006. This plan fit our needs exceptionally. The plan covered our medications very well at a very minimum co-pay. This past fall, we were forced to change plans because the PDP raised the premiums on their plans. We both switched to different plans. I researched over the internet and could not find any plans close to the one we previously held with the old PDP. Although our premiums remain low, our co-pays for our medications have risen significantly! We have gone from approximately $25/month in co-pays to close to $50/month in co-pays!
(Submitted March 12, 2009)
Can't Afford My Medicine
Mount Juliet, TN
When I was working in Corporate America a drug I was taking had a $25.00 monthly co-pay for an injectable drug. Trying to return to that same drug on Part D, my co-pay is 33% of between $1500.00 to over $2100.00 per month! That is correct, not a mistake. Basically the provider does provide the drug but at a rate that makes it impossible for anyone I know on Medicare. I tried to go without it. I went 6 weeks without any medication and ended up not being able to care for myself or hold a coffee cup due to pain, swelling, joint damage and limitations. This is what Part D has done for me...pure suffering and now the need for more surgery on a hand joint that has been damaged.
I find myself in a place where I have to choose between paying huge sums of money for a drug that I cannot afford or being unable to care for myself and have any quality of life.
(Submitted April 22, 2009)
Problems with Premium Deductions
El Dorado, AR
My wife has been enrolled in the same Prescription Drug Plan (PDP) for the past two years. Today we received an un-itemized request for payment of $999.10 due to "an error on the PDP's part". CMS rejected the company's request for a deduction from her benefit, the company did not send us a coupon booklet with which to make payments and the balance has been accumulating for two years. This is not a trivial sum for a retiree. We have no recourse. I consider this a monumental bungling by both the PDP and CMS.
(Submitted February 27, 2009)