Share Your Story
If you have a story that you would like to tell please:
- E-mail us
- Contact us on Facebook
- Record a video of your story and upload it to YouTube, then send us the link
We'll post your stories here. Do your part and spread the word!
Please take some time to read and hear the personal stories from individuals who would be greatly impacted by the competitive bidding program.
Lynn and Billy
Caregiver and Partner Speaks Out for Access to a Provider of Choice
CMS vs. My Mom
Published in HME Business - http://tinyurl.com/CMSvsMYMOM
Chances are, you’re aware that CMS has debuted the contracted providers for Round Two of its national competitive bidding program. If you haven’t, read this story, to get the details. The figures should astonish you: CMS awarded a total of 13,126 contracts to just 799 providers to serve all of the categories for Round Two’s 91 CBAs.
We in the industry find this jaw dropping, but I wonder what it will be like when the average Medicare beneficiaries and their families discover what they’re in for with this program. Well, I’d like to share my personal story: I’m the youngest of three siblings, and my surviving parent, my mother, is in her 80s (she’d ground me if I shared her actual age) and lives in a nearby. She’s doing great. We have her over multiple times a week; she loves visiting with her grand kids; and when she’s not running circles around us, she’s out and about doing all sorts of activities with her friends.
However, like a lot of seniors, she depends on DME to live this independent lifestyle. Specifically, she needs a walker. She is not stable to walk on her own, and uses it nearly every moment of every day to get around. That walker is a part of her.
Well, that walker is getting a little long in the tooth at the moment. I do a lot of work in the garage, and the other day I gave it a much-needed overhaul. The bolts and bushings on the wheels were falling apart; multiple fasteners were loose; and I had to extract a broken bolt from a threaded star nut insert in one of the tubes and replaced it with a good one. A thorough cleaning and liberal lubrication finished the job.
I probably breathed another year or two of life back into that old piece of “bent metal” that she dearly depends on, but I told her that we had to hit up her local provider soon to get a replacement. That’s really not a big deal, as there are multiple providers in her area, and a really good one about a mile and a half away. She could take her bus service, or I could drive her over at some point.
The search yielded 18 providers. The first provider was roughly four miles away. That’s not too bad. The next was 16.5. Then the mileages started getting higher — 22 miles, 28 miles, 35 miles, 45 miles. Look, we live in Southern California. If you’re not familiar with it, there are roughly 8 million people living in the Los Angeles and Orange County basin and getting around is hard. Traveling 22 miles is a bona fide pain in the neck for me to drive at rush hour, but if my mom were alone and had to use the bus? It would take her the better part of the day. And traveling 45 miles up to L.A.? She might as well get a hotel room, because the busses will stop running before she can get enough transfers to get home.
But what really threw me was the out-of-state bidders. Contract holders hundreds and thousands of miles away in Texas, Kentucky, Alabama, North Carolina, and Florida are somehow supposed to start serving my mom by Round Two implementation. There is virtually no way they are going to be able to site locate and fund commercial real estate in Southern California of all places by July — or even December — let alone set-up shop, staff and start serving patients. (One wonders if they accepted the contract simply to sell it.) How did CMS deem their viability as potential providers?And my mother’s dilemma is for a simple walker. What about an oxygen patient? Trust me, the results are just as surreal. This is the ridiculousness of competitive bidding on parade for everyone to see. The question is, when is the public going to see it? Hopefully in time to build enough support to stop this program before implementation.
Editor of HME Business
Oxygen User and Advocate
Uses BiPAP for Sleep Apnea
Annette describes how she contacted multiple bid-winning Medicare-approved providers to acquire a new wheelchair battery. Many of them were unable to help her. After contacting 9 providers, she received her battery 1.5 months later.
Nelly, a widow who lives in Kentucky, was forced to change oxygen providers on Jan. 27, 2011, as a result of the Medicare Competitive Bidding Program for home medical equipment. She has cardiomyopathy and is required to use oxygen at nights to give her heart a break. She worked with a home medical equipment provider for more than a year before the change, and her insurance always covered the payment.
That year after the transition, Nelly visited the doctor to see about getting a smaller concentrator that was more conducive to her active lifestyle. She wanted to stay away from home at times and not be held down by the large oxygen concentrator in her home. Her doctor prescribed her a new machine and made the call to her provider for to get the process started. But she never heard from the new provider and didn’t want to bother the doctor as she was sure that he had more important business to attend.
More than one year later by March, she had still not been seen by a bid-winning provider. She received regular bills monthly bills from the provider which piqued her curiosity, and sent her bill payment to Florida every month. But a provider had never come to her door. Fortunately her previous pre-bidding provider had left her with a few extra supplies so she could weather the transition. On March 8, 2012 she called to inquire about the bills, wondering why no one had ever come to see her even though she is paying her monthly bill.
Now that 14 months have passed, she is in need of tubing and she wonders when a provider will come to see her. In the past her provider would check in on her at least every six months and she grew comfortable knowing they were there for her.
Nelly is an avid gardener and relies on friendly neighbors to help her when the job requires more than she can give in her older age. She proudly produces many vegetables for friends and family and would feel more confident with a provider she can count on.
Oxygen User Discusses Round 1 Bid Issue
Equipment User and Advocate
Trisha relies on medically necessary oxygen. Here she explains how she has lost access to quality products and service since the Medicare competitive bidding program was implemented in here area near Cincinnati.
Trisha, Northern Kentucky
Paul is a concerned husband and worries that the results of the Medicare Competitive Bidding Program are impacting his wife’s safety.
Paul’s wife, Mary, was forced to change medical equipment providers in January 2011. He chose a new provider based on its proximity to his home. The new provider is not located in the town where he lives.
He reports that the new provider visits much less often than the old provider, now visiting once every six months instead of once every three. At one point an entire year had passed before a provider visited. Paul called the provider for new oxygen tanks and was told that since his wife “isn’t as bad as other people, she doesn’t need the same attention.”
Paul understands that Medicare’s effort was to save money, but he also recognizes that their competitive bidding process results in poorer service for his wife. He has been forced to make oxygen concentrator adjustments on his own when coached by a doctor, and he is much more worried than he was before. He admits that he is not trained to monitor the meter and to know when adjustments are necessary.
Overall, the competitive bidding program has left Paul and his wife feeling unsafe and at a loss. His wife had used oxygen more than a year prior to this program, and they always felt that she was properly cared for and attended by medical equipment providers. He wanted to speak out so that people could understand the unintended consequences of the program.
Paul and Mary
Paul Fears for His Wife's Safety Without Regular Oxygen Service
Mary Ann depends on medically necessary oxygen. Here she discusses the lack of service she has received following the implementation of the Medicare competitive bidding program in her area.
Mary Ann, Northern Kentucy
4. Read the letter, add your own words (if you choose to)
Betsy Battles Medicare Rules To Get The Oxygen She Needs
Doug, Deanna and Rosemary
PFQC and MS Society Advocates
Note from PFQC; This story is from Florida resident and oxygen user Karen Deitemeyer. Her story clearly shows the negative effects of Medicare's competitive bidding. Karen is an oxygen user and her daughter works in the HME industry. Both have been affected by Round 1 of competitive bidding program.
"Will you get the oxygen equipment you want? Don't hold
I live in the metro Orlando area, which is one of the initial competitive bidding areas. The oxygen provider that my insurance company now contracts with (one which won via competitive bidding) has terrible customer service. When they came to set up my concentrator, I asked for a humidifier bottle. They told me they prefer not to provide them because they do not believe in them. I continued to ask, and I was finally provided with one. I asked for a 50-foot length of tubing; was told they only provide 25 feet. I asked for two of those, then, with a connecter, and was told no and they didn't budge from that. (Luckily I still had some extra tubing left from my previous provider).
"They also do not provide the water trap", nor do they have the size of cannula that I prefer (the Salter 1616). Not life-threatening, but all signs of a company doing as little as possible since they bid so low. They also carry only two types of portable oxygen concentrators. I'm trying to get them to provide the one that best meets my needs and has been specifically ordered by my doctor, but it isn't one of the two that they carry, so they are refusing.
Medicare's competitive bidding sticks it to smaller diabetic suppliers
"My daughter works for a diabetic supply company in the Atlanta area - a small family-owned company that services patients in a small geographical area - maybe three or four states. With competitive bidding, all diabetic supply houses are required to become national suppliers. This would be okay, except that they must now purchase licenses (which aren't cheap) in ALL states, whether they intend or want to do business in all states. The owners can't afford to do that, and have sold to a larger, nationwide company. They are in the midst of closing everything out and transferring all records to the larger company and all but five employees have been paid off. My daughter figures she might have another couple of months left and after that, she also will be out of a job."
Medicare’s Competitive Bidding Brings Problems to The Sunshine State
The End of Customer Service - Robert's Story of The Medicare Competive Bidding Program
Sara Jo Shettles of Liberty, MO discusses her trouble acquiring a wheelchair battery as a result of the Medicare competitive bidding program.
Sara Jo Settles
Wheelchair Battery Blunders and Competitive Bidding
I'm Not Going To Fight To Breathe
Joe and Beverly Sanders
Joe Resorts to Buying a Hospital Bed from Craig's List
Marion and Jeanine
Earl and Helen
Earl Is Expected to Find a New Provider That Operates Far Away from Where He Lives
Medicare Confusion Confines Woman to Her Bed
Cathy McMullen - Part 1
Registered Nurse, Denton, Texas
Cathy McMullen - Part 2
Registered Nurse, Denton, Texas
9 Powerful Minutes - PFQC Advocates Ask Sen. Tom Harkin to Take Action
Shirley Talks About Medicare's Competitive Bidding and Getting Acess to Oxygen
I'm Not Going To Fight To Breathe
- Denton, Texas
For the last 4 years we have used a local Denton supplier, EntraMed Inc. for all of my daughters' supplies, with never a glitch in their customer service or on-time delivery of supplies. Since our forced switch to another provider, we are still awaiting "paperwork" problems to be ironed out. This has been going on for over a month.
With yet no delivery of formula, I am forced today out-of-pocket the necessary formula my 45-year-old daughter needs for daily sustenance. My repeated contact and the urgency of the situation seem to have little effect on the company's responsiveness. Perhaps they are inundated with new patients and cannot process them in a timely matter. Whatever the reason, we, the consumers and their care providers are faced with greater obstacles in providing essential care for our loved ones. This is a disgrace!
Mother and Caregiver for her daughter
Joe Sanders, Denton County, TX
A message from PFQC received from Joe:
I am a Limb/Girdle Muscular Dystrophy patient who has lost most of my ability to move myself around.
I use a electric wheelchair, a body lifting toilet seat and a lift to get in and out of bed. I have been given a prescription for an electronic hospital bed to allow me to sit up and adjust positions while in bed.
There are NO durable medical equipment suppliers in Denton County, Texas who were granted the right to furnish electronically adjustable hospital beds. The lack of supplier is causing me great anguish and no one knows where I can get the required equipment.
The competitive bid process should have made certain that all citizens would be served regardless of their location.
PFQC followed up with Joe:
Joe is 71 years old. He told us that he didn't contact 1-800-Medicare because he knew there was not a provider in his county to service him and felt that the delivery of the bed would be an issue. So instead he bought a new mattress with his own money and found a used hospital bed on Craig's List. He considers himself fortunate that he was able to purchase his own bed, but worries about others who don't have money to do the same.
Retired, Denton County, TX
Home care provider and wheelchair user
Advocate - Specializing in Orthotics and Prosthetics
Right now I am helping to care for my elderly parents who are in an assisted living program. My mother suffers with dialysis as her kidneys have failed, she has had multiple knee surgeries and is now in a wheelchair and has very limited mobility. She also has been fighting with a wound for over a year, and has had to get a hospital bed with an alternating mattress to help. This process has taken me over 6 months to get her. Due to the lack of knowledge on how to navigate the doctors, Medicare and approval process to get her this bed.
My father has had a pacemaker defibrillator put in along with 5 stints for his heart; he has also suffered a stroke. So his health is not the best but he tries to help my Mom as much as he can. But most days are doing good in taking care of himself.
I find it very difficult to navigate the Medicare system as is, and I am half the age of my parents and able bodied. So I can’t imagine someone who is in poor health and has to manage this all on their own! There are so many different avenues you have to go down just to get one thing in place. I can NOT imagine now adding a restriction as to where and whom you can turn to get the products and care you need. I believe Medicare's competitive bidding program is not the answer it is just another hurdle for these people who are already struggling to get the quality care they deserve!!
Caregiver for her parents
John and Bobby
Irv and Florence Throndson
Retirees and parents of 15
Retired business owner and caregiver for her husband Keith
Retired architect and healthy policy advocate
Advocate Jenn Wolff, a occupational therapist and activist for people with disabilities from Waverly, IA, discusses her story and the negative impacts of competitive bidding for those who rely on medical equipment.
Occupational Therapist, Waverly, IA
Angie and Ken Plager
I am on disability because of complications from diabetes. I have neuropathy and because of that, my balance is very bad and I use a walker to get around. I also went thru a very bad foot infection and lost part of the natural bone in my heel. Because of that surgery, I need to wear orthotics in my shoes. I literally keep my shoes on the entire time I am awake because I am not able to walk without the orthotics. I use a shower chair and sit on that chair before taking my shoes off.
I am very concerned that this new Medicare competitive bidding program is going to have a very negative affect on the quality of my life. I have already lost a lot of my independence and I am struggling to not lose any more than what I have. I also have gastroparesis, which is nerve damage to my stomach. Because of that, I need to carefully monitor my blood sugar to try and match my insulin to my digestion. I also am not able to tell when my blood sugar goes low and have a history of passing out because of low blood sugar.
I recently tried a different brand of test strips that were a lot cheaper than the ones I normally use. They were not even close to being accurate (and I did test them against a lab blood draw). They did not register any lows for me and were frequently 20-30 points off. There is a huge difference between your blood sugar being 40 and it being 70. I am very concerned that with this new program, I will not be able to get test strips that actually wor k. None of the brand name strips that have been rated the most accurate are in the cheap price range. If I am not able to keep my blood sugar in tight control, that means a very slow, painful death from neuropathy.
I have already had problems with a cheap walker, a cheap wheelchair and a cheap pair of orthotics. The quality of medical equipment should not be compromised in order to save a couple bucks.
PFQC Advocate and Diabetic, Ebensburg, PA
I have worked as an RT and RN in homecare for nearly 25 years. I am always touched and in awe of what my patients and caregivers accomplish in the home. I have helped parents care for a child with muscular dystrophy move from that first week home on a ventilator to graduating with honor from college. I've watched patients who thought they would never leave their home due to fear of not being able to breath go out alone and take care of their own daily needs with oxygen supplementation.
We have the tools and the expertise to keep people at home where they want to be, where they are healthier, more content, active and motivated in their care, and adding to our neighborhoods and our lives. Patients and caregivers rise above what they need to do over and over again because it is their goal to remain independent and in charge of their lives as long as possible. To prematurely restrict these people to early admissions to nursing homes, substandard care and equipment, the stress of trying to understand a maze of multiple providers who may not even be in the state they live in seems unfair, uncompassionate and wrong.
We professional caregivers embraced our fields because we were moved to help those who needed medical support. Our motivation is being forced to one of survival to provide even the lowest level of care to our precious patients. I agree wholeheartedly that we as Americans need to monitor the national budget and contain costs. But to attempt to do this with a failed system such as the competitive bidding program that is being touted as the next big thing that will save Medicare is insanity. We need a realistic plan with achievable goals - not broken twigs in a box we are then charged to build a fort with.
RN, CRT, Bridgeville, PA
PFQC advocate Teri Lynn discusses her need for quality equipment and service that is close to home. She stresses that she is an individual and deserves to have a choice. She wants to stop the Medicare competitive bidding program, which will challenge her access to equipment and providers she trusts.
Teri Lynn Jorgensen
Program Director, 93.5 The Mix, Waterloo, IA
Jackie Heinz of Independence, Iowa is the owner/director of Kinetic Energy Dance Studio in Cedar Falls, Iowa. She has spinal muscular atrophy, a condition that confines her to a power wheelchair. She is unable to move herself on her own. But Jackie’s spirit cannot be confined, as long as she has access to a functioning chair. Jackie lives on a farm with her husband where she mows the lawn and cares for their horses. Six days a week she drives herself to Cedar Falls to manage her studio and 9 dance instructors.
Jackie already has barriers to access. As she has strived for independence over the years, she’s experienced many dilemmas that make it hard to acquire a new chair when needed and to get her van repaired. Recently she was sent to three cities at distances over 1000 miles to find someone to service her van.
She understands that the competitive bidding program will create same problem for power wheelchair repair. Living in rural Iowa, she already travels more than 20 miles for service, and she fears that competitive bidding will force her to drive even further for equipment. Without her chair, Jackie loses all independence. She would need to hire a health aid to assist her with daily living, which the government will no longer fund because of her income. She could not help out on the farm or drive herself to work every day.
If her chair is not functioning and she can’t receive the service she needs to fix it, her business suffers and dreams of independence vanish.
Jackie from Independence, Iowa is in a fight for her independence. She battles competitive bidding today so tomorrow she will have access. Join her in the battle by becoming an advocate now!
Contact People for Quality Care by e-mailing email@example.com.
Owner, Kinetic Dance Studio, Cedar Falls, IA
My name is Kemi Yemi-ese and I was recently crowned Ms. Wheelchair Texas this past March. With this title comes the responsibility of promoting awareness of issues that affect the disabled community. Being disabled due to a car accident 3 years ago, has lead me to depend on the services of home care businesses that service my powerchair, and provide my medical supplies. I depend on the reliability of these services, and I am sure that anything that hinders homecare services will negatively affect individuals like me who are disabled but determined to live full lives. After my car accident I resolved to go back to school and finish my degree in neuroscience at Baylor University, but I needed a power wheelchair to get around campus because I am paralyzed in about 75% of my limbs. If it weren’t for the good timing and efforts of my homecare providers, I wouldn’t have been able to go back to school. I am sure my story is like any other’s whose pursuits are dependant t on the homecare industry; I owe my success in graduating, gaining employment, and becoming now a voice for disabled individuals to the support I continuously receive from my homecare provider. I urge you congressmen to acknowledge and repeal competitive bidding for the sake of the patients that will ultimately be affected by it.
Ms. Wheelchair Texas 2010
Ms. Wheelchair Iowa, President of Spinal Cord Injury Association of Iowa, Cambridge, IA
Advanced Duchenne Muscular Dystrophy Patient
I am a college student and dropped out of my first semester after transferring to a school that is 45 minutes from my parent’s house because I could not find reliable aides. I cannot stress enough how important it is to be able to choose a personal aide.
Aides help people like me with our most intimate needs and we must be able to find a person who matches our personality and is always reliable. I went through several aides until I found one that was constantly there for me and always made my day start out on a good note.
Previous aides would either not show up or were not qualified for the job. One aide even asked me if she had to give me showers because she was not comfortable using the lift. Because of these difficulties, my mom offered to travel back in forth from our house to the campus so I could continue school.
I chose to major in journalism and attend Iowa State University because I have a passion for writing and Iowa State has a good journalism program. Imagine if college students only had two or three choices of where to go to school and what to study. That is not desirable.
Now, imagine your daily routine. What if you needed assistance, required the use of personal aides and homecare equipment, and only had a few choices to choose from? That would not work well.
Everyone has different needs. There is no uniform equipment or services. I use a Hoyer lift, shower chair and a hospital bed, as well as have aides helping me throughout the day. Without these important people and products, I would be unable to attend college or even live a productive life.
Deanna is a Physical Therapist who talks about the impact of Medicare's Competitive Bidding
Doug discusses how competitive bidding made getting a new wheelchair battery difficult
Lynn and Billy