When you deal with a chronic illness – say, arthritis, diabetes or heart disease – health care is never far from your mind.

In May 2008 we asked people in the arthritis community, including Arthritis Today readers, what they think about health care and its reform. Of the more than 6,000 people responding to an exclusive Arthritis Today-Arthritis Foundation online survey, 50 percent said they were “very concerned” about their access to and the affordability of medical services, medication and/or insurance over the next five years. Results have been rounded and respondents’ comments have been edited for brevity and clarity.

So, what health-care issues do readers want the president of the United States and Congress to know? What we found seems to coincide with what many Americans express (such as that insurance and medications cost too much, it’s difficult to get insurance with a pre-existing condition, and Medicare is complicated and costly). But respondents – nearly all with at least one form of arthritis or related condition – reminded us they must deal with these struggles every day. And they are ready for solutions.

Insurance – Getting It and Keeping It

In the insurance world, a chronic illness often is referred to as a pre-existing condition. All too often, it’s the reason insurance companies impose a waiting, or exclusionary, period during which expenses are not yet covered – or, in the case of an individual application, rejected. This practice prevents people from purchasing insurance only when they are ill, which raises insurance companies’ costs. Under federal law, if a person takes a job with employer-provided health insurance, the insuror may impose an exclusion period of up to 12 months if the employee has pre-existing conditions. However, for individual health insurance, exclusionary periods vary by state.

Many survey respondents told us they have been unable to purchase independent health insurance altogether, and others have been dropped due to their high medical claims. Some work more than one job or stay in a negative job situation to keep their insurance.

Forty-two percent said insurance was their most important health concern. And almost 4 percent told us they have no health insurance, citing cost and a pre-existing condition clause.

Your Voice is Heard

“I’m one job away from losing my coverage. If I do, no one will insure me due to pre-existing autoimmune diseases.”
– respondent with osteoarthritis (OA) and lupus

“After being self-employed for 21 years, my husband had to join a firm for health coverage. We could not get it with my pre-existing condition, RA.”
– respondent with rheumatoid arthritis (RA)

“Because I have a pre-existing condition, I cannot afford  decent coverage, nor [does my health allow me to] work a traditional 40-hour-a-week-with-benefits job.”
– respondent with fibromyalgia and spondylitis

“I have the good fortune to have insurance and access to doctors and medications. I consider myself lucky, and medical attention should not be based on luck.”
– respondent with juvenile arthritis
 

Prescription Drug Costs – Feeling the Squeeze

Feeling good is priceless. Unfortunately, medications carry a cost, and a hefty one. One survey respondent in her 20s who has rheumatoid arthritis (RA) spends more than $15,000 annually for her medications. “My family and I can barely afford things the way they are now, and if things don’t change dramatically,” she says, “I’ll end up bankrupting the household.”

Just under one-third of people (32 percent) told us that cost of medications is their most important health-care issue.

Insurance requires higher and higher co-pays. Those without insurance pay out-of-pocket or skip their medications altogether. Almost half of respondents (46 percent) noted that medical expenses have created a financial burden for them and/or their families. Another 10 percent said they have accumulated a great deal of debt from medical costs.

On an encouraging note, half (51 percent) of survey participants said cost has not adversely affected their health care. But the other half have done the following:

• skipped or delayed seeing a doctor when it was necessary (33 percent);
• skipped or delayed having a medical procedure (24 percent);
• skipped doses or cut back on dosage to make medication last longer (24 percent); and
• not filled prescriptions (18 percent).

Your Voice is heard

“I’m at the point where I’m going to have to make some hard decisions about which medications I absolutely have to have. I’m afraid my [biologic drugs] will have to go.”
– respondent with RA and psoriatic spondylitis

“I am terrified about not being able to get proper care because I don’t have a high-paying job but [do have] high medical expenses... I’m stuck working, even though it is slowly killing me!”
– respondent with OA, RA, osteoporosis and fibromyalgia

“Often, I must make a choice between seeing my doctor, getting medications and buying groceries.”
– respondent with RA, OA and psoriatic arthritis

“I cut back on dosage to make my medication last longer.”
– respondent with RA

“My cost went up to $40 co-pay, which is hefty with 12 prescriptions. I am scared. I’m only 61, and dread having 20 more years of this.”
– respondent with polymyalgia rheumatica and OA

Medicare – Living Within the Doughnut Hole

A quarter (26 percent) of respondents are on Medicare or Medicaid. Created in 1965 by Con­gress, Medicare provides seniors with medical, hospital and, recently, prescription drug coverage. Many have a love-hate relationship with the government program Many of the 26 percent of our survey respondents on Medicare or Medicaid are unhappy with it: 30 percent of Medicare recipients named the program their No. 1 health-care concern.

The majority of Medicare recipients who responded to the survey (70 percent) are concerned about their ability to afford medical care, medications and insurance over the next five years, with 41 percent of those being very concerned.
 

But people are worried about more than bureaucracy and cost. Other problems cited in our survey include confusion over plans, getting questions answered, too few specialists and the doughnut hole, which requires recipients to pay 100 percent of their expenses after they have reached a certain dollar amount. Since the Medicare Part D prescription drug plan took effect in 2006, this doughnut hole amount has risen each year; in 2008, the doughnut hole begins when the recipient’s total drug expenses hit $2,510 – which includes the recipient’s out-of-pocket expenses and the plan’s expenses. The gap in coverage continues until the Medicare beneficiary spends about $3,200 more, after which catastrophic coverage kicks in.

Even those who don’t hit the coverage threshold struggle financially. Forty-four percent of Medicare recipients in the survey noted that medical expenses have put a great strain on their finances. Almost 60 percent of respondents on Medicare spend between $2,000 and $10,000 per year on premiums, deductibles and out-of-pocket medical expenses. More than 10 percent spend more than $10,000.

Your Voice is heard

“I hit the doughnut hole every year and have to go a month or two without some of my meds, because I just cannot afford them.”
 – respondent with OA
 
“When you get in the doughnut hole, you’re on your own. You might as well not have any insurance at all.”
– respondent with RA

“After Medicare and prescription premiums and co-pays, I have less than $800 for the month. Then I pay mortgage and utilities, and sometimes I cannot [afford to] eat much at all.”
– respondent with RA

“There are too many variables in choosing a Medicare [prescription] plan. There is no way to get the ‘best deal.’”
– respondent with OA; spouse with RA

“I made it all the way through the doughnut hole by the middle of May this year. The two months of full-price payments during that time made me cry.”
– respondent with RA