Representatives in Congress: Chambliss/Isakson/Deal

Health Care Issues
Denied Health Coverage
High Out-of-Pocket Costs
Medical Debt
Unmet Health Care Needs
Delayed Care
Employment

Arthritis Advocate: Aimee B.Aimee Busquet

Dawsonville, GA

I currently have health coverage under my husband's plan, but three years ago, when we relocated from Florida to Georgia, both of us were unemployed for three months. During that time, he was able to get interim coverage for himself and our daughter, but I was denied. We had to pay an exorbitant amount of money for me to be covered by COBRA.

I take a total of 10 prescription medicines each month, each of which has a tier-level co-pay, totaling about $350.00 a month for prescriptions alone. My annual deductible of $500 hits within the first few months of each year due one procedure or another.
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Representative in Congress: Waxman
Health Care Issues
Problems with Health Coverage
High Out-of-Pocket Costs
Medical Debt
Unmet Health Care Needs
Delayed Care

Bari Carrelli

Westlake Village, CA
 
I am on COBRA, and tried to obtain new medical coverage, but was told that my son is not eligible due to his arthritis until COBRA runs out. I do not know if I will be able to obtain coverage at that time – I could not get an answer from the insurance companies.
 
I am currently unemployed and am paying $1,500 a month for COBRA and several hundred dollars a month for prescriptions and medical bills for myself and my two children.I am using money from my 401k to pay medical bills, and recently paid off hospital bills for two surgeries for my children. I sometimes forgo medications, doctor visits and treatment for myself, but not for my children.
 
Representatives in Congress: Burr/Hagan/Myrick

Health Care Issues
Few Pediatric Rheumatologists
Out-of-Pocket Costs
Medical Debt
Unmet Health Care Needs
Delayed Care

Arthritis Advocate: Kari C. (right) with RaeganKari L. Cupp

Mount Holly, NC
 
Going to the doctor is difficult on our family due to the shortage of pediatric rheumatologists, long travel time for treatment, and extended times between office visits due to the number of patients that one physician must treat.

We have had to be extremely careful not to have a lapse in coverage due to pre-existing condition clauses, and will soon have to pay for expensive COBRA coverage so that we do not have a lapse.

Caring for juvenile arthritis is expensive. In some weeks we average well over $100 in copays alone. We haven’t had to go without medications at this time, and will do anything in our power to make sure that Raegan has what she needs for proper care; however, we sometimes have had to delay therapy, due to excessive co-pays and lost wages from work to accommodate schedules.

Representatives in Congress: Camp/Levin/Stabenow

Health Care Issues
Ongoing Premium Increases
High Out-of-Pocket Costs
Medical Debt
Unmet Health Care Needs
Delayed Care
Denied SSDI

Arthritis Advocate: Tracy L.Tracy Lee Lenzini

Kingsley, MI

I have corresponded with [my representatives] regarding healthcare, and Dave Camp has offered to try to assist me with SSDI. He responded to a letter regarding all the issues I was having with social security and health insurance.

I have been unable to find private health insurance that is affordable and accessable. I currently drive 1-1/2 hours to see a rheumatologist. I am there every four weeks for infusions because Blue Cross will not pay for me to have them locally.
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Representatives in Congress: Hutchison/Cornyn/Barton
Health Care Issues
Denied Coverage
Out-of-Pocket Costs
Unmet Health Care Needs
Delayed Care

Karen Lomas

Arlington, Texas
 
I have been denied health coverage due to pre-existing disease

It costs me less than some, but I have to pay $45.00 for each office visit once a month. I also have a $400.00 co-pay for my medication, which is why I can not afford my prescriptions.

Sometimes I go without my medications and put off doctor visits, recommended tests or therapies due to high cost.

Representatives in Congress:
Enzi/Barrasso/Lummis

Health Care Issues
High Out-of-Pocket Costs
Medical Debt
Unmet Health Care Needs
Delayed Care
Few Pediatric Rheumatologists

Arthritis Advocates: Mason and AnnemarieMason (left) and mom Annmarie Merager

Cody, WY

We have met with our representatives the last two years during the Advocacy Summit and have developed a relationship with them, their health legislative assistants (HLAs) and office staff.

We have had the same private insurance since before Mason’s birth. We’re thankful we’ve never changed jobs or had to change companies. Even so, we still pay on average $5,000 per year in out of pocket expenses – just for tests and procedures. This doesn’t include the $65 copay for each specialist visit ($25 for non specialists) and nearly $500 out of pocket premiums each month. Add travel expenses on top of this and it becomes clear why we still drive a 1993 Nissan Sentra. In addition to refinancing our house to pay off medical bills, we still carry credit card debt to this day.Arthritis Advocate: Mason M.
 
Sometimes you have to make choices and, I’m ashamed to say, we’ve had to skip prescribed medications and treatments in the past, and have delayed doctor visits and tests when necessary.
 
It is an 8-hour drive to Mason’s physician (the closest pediatric rheumatologist). Not only do we have to take off at least three days of work, but also have the costs of driving and hotel (we’ve stayed at the Ronald McDonald House before, though).
 
If another pediatric rheumatologist was closer, we would have better managed care for Mason.
 
Representatives in Congress: Schumer/Gilibrand/Rangel
Health Care Issues
High Out-of-Pocket Costs
Medical Debt
Unmet Health Care Needs
Delayed Care
Employment

Arthritis Advocate: Jack David M.Jack David Marcus

New York, NY
 
I have suffered from psoriatic arthritis, osteoarthritis and lumbago since my volunteer government service in 1966. These are all accepted medical conditions and I have been receiving government workers compensation disability since 1996.
 
Many physicians refuse to participate in government workers compensation which has limited my access to care in meaningful ways; including what I believe to be potentially damaging ways to my health and well-being. Several of my first choice major academic medical center affiliated clinicians refused to participate in government workers compensation.
 
My workers compensation health insurance is sub-optimal, as many highly trained and experienced clinicians do not participate in government workers compensation; thus my clinician choices were severely limited, which restricted my ability to obtain optimal health care. For example, many years ago I required three sophisticated knee surgeries; however, the orthopedic surgeon who reluctantly accepted my workers compensation probably did not actually do the surgeries. My understanding is that his fellows and residents did it with his supervision, only because he was not getting his usual and customary reimbursement.
 
Now that I am a “senior citizen” -- age 66 -- I qualify for and have Medicare in addition to my government workers compensation, for my accepted medical conditions. However, like many highly trained and experienced academic medical center affiliated physicians who refuse to participate in workers compensation, many supremely qualified clinicians have also opted out of Medicare because of inadequate reimbursement. In addition, it is a significant economic hardship for me to pay for my supplemental Medicare insurance each and every month, as well as a pharmacy drug plan monthly.
 
When I had private insurance, co-payments and deductibles were a very difficult -- and sometimes almost impossible -- burden for me to overcome. Given my chronic health conditions, it is impossible for me to be without health insurance coverage, no matter what the economic hardship and sacrifice it is for me to pay the premiums.

Because I receive only monthly workers compensation pay, it is a severe economic burden for me to pay out-of-pocket medical expenses. I am compelled to use my dwindling savings each month because I do not have sufficient workers compensation pay without dipping into my dramatically reduced savings. I get full reimbursement for all of my covered medical conditions under workers compensation; however I am cautious about what pharmaceuticals I purchase because I have out-of-pocket expenses that are not paid for in full by my other insurance plans, including a state drug plan based upon income.

Representatives in Congress: Wyden/Merkley/Blumenauer

Health Care Issues
Denied Health Coverage
Not qualified for assistance
Multiple Surgeries
Enormous Medical Debt
Facing Bankruptcy
Unmet Health Care Needs
Delayed Care
Employment

Arthritis Advocate: Rita R.Rita R. Roetker

Portland, OR
 
I am currently without medical or prescription coverage of any kind. I was denied by the Oregon Health Plan because, though I am divorced with an 18-year-old child, his father and I share joint custody. This fact alone demotes me to single female status, and as such, I don’t qualify for the plan.
 
I only see my doctors when absolutely necessary as I am unable to pay any of the expenses related to my medical care, including doctor visits, lab work and medications. I have enrolled for every prescription assistance program I can find for my medications, but am still awaiting approval.
 
I have enormous debt related to my medical care. In 2007 I was hospitalized for 3 months due to my insides being eroded by the amounts of ibuprofen I was taking to alleviate the pain of my rheumatoid arthritis. Since I had no medical coverage, I was self-medicating simply to make it through my days.
 
After eight abdominal surgeries, a year of being on IV nutrition, numerous follow-up CT scans, blood work, in home care, etc., I had a total medical bill of over $600,000. The hospital wrote off a large portion, but I am faced with having to declare bankruptcy this fall for the unpaid balance.

I'm never certain from one month to the next where I’ll get the money to cover my meds, and many times I go without my meds for weeks, because I don’t have the funds to pay for them.

Representatives in Congress: McConnell/Bunning/Davis
Health Care Issues
Increased Out-of-Pocket Costs
Reduced Insurance Coverage

Arthritis Advocate: Pete S.Pete Scalia

Fort Thomas, KY

 

Currently I have health insurance, but having changed providers numerous times in the past few years, I can tell you my insurance costs have changed dramatically.
 
I have always had some form of coverage – even between jobs – through COBRA. But it was awfully hard to make those payments along with the number of co-pays I have every month!
 
Sometimes it can get pretty tight making those payments. When you add it all up, it’s a substantial portion of my income. I just found out that my current insurance provider does NOT cover the entire cost of my bi-monthly lab work – my previous provider did. So I have a few extra dollars I need to pay.
 

I have always done whatever I had to do to make my payments. I know how miserable I am without my medications…and have always found ways to pay for them.

Representatives in Congress: Grassley/Harkin/Latham

Health Care Issues
High Out-of-Pocket Costs
Medical Debt
Unmet Health Care Needs
Delayed Care

Arthritis Advocate: Colleen S.Colleen Scharlau

Woodward, IA
 

Paying off medical debt is a difficult. I have to pay 100% of the charges for my medical care until I reach my deductible and out-of-pocket amounts. Arthritis visits and treatments are very expensive. I was on Remicade for a while, which cost $1,200 -$1,600 every 4-6 weeks. That's money I don’t have. I know that I am not taking care of my disease properly because I can’t afford to pay for the medications that my doctor wants to prescribe for me.

 
I have health coverage though my employer, but it is costly. I am on a high deductible health plan (HDHP) with a health savings account (HSA). I have worked consistently for the last 10 years and have not lost coverage or had to purchase an individual plan.
 
The medications that have been developed in the last 10 years also are very expensive. I have had arthritis since I was 13, so I have lived with it for many years in addition to having the financial burden of it as a young adult.
 
My physician wants to be very aggressive with my care, but I can’t afford some of the medications he would like to put me on, so that leaves me to continue taking the ones that are less costly. I don’t go to the doctor every month like I should, because I know it will cost me a minimum of $160 plus labs and additional therapies.

I am still working full time, and am a married mother of three kids. I refuse to let this disease control my life.

Representatives in Congress: Snowe/Collins/Pingree

Health Care Issues
Denied Specialist Care
High Out-of-Pocket Costs
Medical Debt
Unmet Health Care Needs
Delayed Care

Arthritis Advocate: Lori S.H. Lori Schnieders

Gorham, ME
 
 
I have the complication of having auto immune hepatitis and have gone into liver failure. The insurance company is not willing to allow me to go to Boston to be under the care of a hepatic specialist who can address both the rheumatoid arthritis and the AIH.
 
I was without coverage while I was on sabbatical from teaching from which I still have existing debt. Additional costs continue to pile on even though I now have insurance
 
I sometimes forgo medications due to their high cost, as well as putting off doctor visits or recommended tests or therapies, but I try to keep it at a minimum.
 
Representatives in Congress: Webb/Warner/Cantor
Health Care Issues
Higher Premiums
High Out-of-Pocket Costs
Unmet Health Care Needs
Delayed Care

Arthritis Advocate: Erica S.Erica Stotler

Glen Alen, Virginia


My insurance through work is going up 20% with increased deductibles and out of pocket max. I can’t get rituxan; I have to try other things first. I worry with both my husband and I not getting even cost of living increases. How we will afford the new hike in health care?

I have had to rely on my parents to help me with costs, and sometimes put off doctor visits, tests or therapies, because of the expenses.

Representatives in Congress: Feinstein/Boxer/Berkley
Health Care Issues
Multiple Family Members
    with Arthritis
Few Pediatric Rheumatologists
On Full-Time Disability
High Out-of-Pocket Costs
Medical Debt
Unmet Health Care Needs
Delayed Care

Arthritis Advocate: Melissa W.Melissa D. Wasilevich

Las Vegas, NV
 
I have had the opportunity to meet with Rep. Shelley Berkley (NV) on numerous occasions: NV Families First Luncheon, Elk’s Lodge Christmas for Children, March of Dimes Signature Chef’s gala, and currently stay connected with her and her staff via FaceBook.
 
We are a family with multiple arthritis patients:
  • I have a 4-year-old with juvenile rheumatoid arthritis;
  • I have a 10-year-old with juvenile arthritis (a very difficult diagnosis, because my son also has cerebral palsy and is non-verbal);
  • I have arthritis secondary to knee surgeries and a spinal fusion;
  • My mother has osteoarthritis and fibromyalgia; and
  • I have a sister with fibromyalgia.
We have health coverage through my former employer: Guardian Insurance Company (but by the grace of God). I was placed on full time disability while employed for the company. Fortunately for me, and my family, the policy was worded in such a way that it allowed not only me to keep my medical coverage, but my entire family was also included. I also receive Social Security Disability Income (SSDI) and my children receive SS benefits that come from my SSDI.
 
I have been fortunate that during my working lifetime I chose to work for the insurance companies. I, however, have had to be on the other end explaining why someone was declined or knowing by just reading their application that their request for coverage would not even be considered. I also knew that each time they were declined by and insurance company it was noted in a national database used by many insurance companies (known as the Medical Information Bureau or MIB).
 
Many years our out of pocket medical expenses are greater than our total household income. We have spent many years juggling credit cards to pay for doctor’s and hospital visits. Our largest out-of-pocket year was 2005 -- for $63,000. Subsequent years average $30,000 out-of-pocket for our family.
 
Paying out of pocket expenses is always a process. You wait to see which doctor or hospital demands payment the most aggressively and try to take care of those bills first. Sadly it is the “good guy” doctors who understand and who try to cut us a break that end up being the last ones paid -- if ever.
 
Out of pocket copays add up quickly. Also travel. Since Las Vegas lacks in quality pediatric care, we are often forced to go out of state to seek second medical opinions or even to get something as simple as a diagnosis!

There have been times that I've not filled prescriptions for myself, because I knew that my one of my children needed medications -- and theirs always come first. We try NOT to put off appointments, tests or therapies because of cost, but sometimes that is impossible. There are a few offices willing to take payments and work with your financial situation, but since there are so few of those types of offices, the waiting list to get in to see the doctor or therapist is often months -- not days or weeks -- to see them.

Representatives in Congress: Voinovich/Brown/Boehner

Health Care Issues
Lapse in Health Coverage
High Out-of-Pocket Costs
Medical Debt
Faced with Foreclosure
Unmet Health Care Needs
Delayed Care
Employment

Arthritis Advocate: Brenda W.Brenda T. Williams

Middletown, OH
 
After being terminated from my job due to health and medical reasons relating to my arthritis, it left me without health insurance for 3 years. I had to go to the emergency room and was left to pay a $1,000 bill, which I have not and still cannot pay. Although I am currently employed and have health coverage, I still find it difficult to afford the medications.
 
I have to make a conscious decision each month to either buy food or personal necessities or get my prescriptions. Yes, it is very difficult, because my routine office visits and prescriptions can wipe out and supersede my budget, which is very little. Due to other economic problems I have barely enough to make my mortgage payments while fighting foreclosure on my second mortgage, the utilities, gas and auto maintenance. I once had to miss a mortgage payment just to repair my car, because I can no longer use my credit card. I applied for assistance with my medical, but did not qualify.
 
I incurred medical debt when I was unemployed and was taken to the emergency room by ambulance due to complications with my legs and back. My body had stiffened so bad I could not move and the muscle spasms caused excruciating pain. Additionally, the hospital in my area no longer accepts my insurance so now I am responsible for paying the lab costs filed by my doctor’s office, because they use that hospital’s lab.
 
One of my prescribed medications costs more than my deductible, so I cannot fill the prescription. I can only afford the one ancillary ($10 copay) and not the non-ancillary ($50-$75 copay).
 
I need to follow up on a test I recently took, but because I don’t have the money for the copay right now, I must wait to schedule the appointment. You cannot see the doctor until you pay.
 
Representatives in Congress: Murray/Cantwell/McDermott
Health Care Issues
High Out-of-Pocket Costs
Employment

Arthritis Advocate: Judi Y.Judi Yazzolino

Seattle, WA
 
I was laid off in Feb. 2008, and have excellent Cobra coverage which runs out in Sept. 2009.
 
I am struggling to pay my Cobra, because I have decided to start my own business and am extremely concerned about the health care coverage I am going to be able (or not be able) to find. I am currently on Remicade, which works fantastic for me, but is very expensive. I don’t want to have to go off of it.

 

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