Insuring your health

Lupus Foundation of America

Resource Content

LaKesha Williams, 34, of Rock Hill, SC, was at work answering phones at CITI Financial Call Center when the vague symptoms she’d been experiencing for a few months became too serious to ignore. Her hands had always been cold, but this time, they swelled up and turned purple and black. When she left work to drive to the urgent-care center, she used her wrists to steer. Her hands were too numb to grip the wheel.

Williams was officially diagnosed with lupus one year later. She tried to go back to work. But being a call center operator is hard when your hands are too numb to type. Plus, she was always fatigued, and her joint pain made sitting through a normal work day impossible. Two months after being diagnosed, she took a leave of absence. “It was supposed to be temporary,” says Williams. “On the first day after my leave, I was supposed to be on the phone, but I just couldn’t do it.” That was in summer 2009. She has not been able to work since.

Williams’ need for medical care increased, but the leave of absence cut her pay to 60 percent of her salary. She still had access to her job’s health insurance, but the pay cut made it difficult for Williams, a single mom with a daughter, to make the monthly premium payments. She tried Medicare, but she was too young and not considered disabled. Her state’s Medicaid office told her she had too much income to qualify—exactly $40 too much. Private plans were not an option, because her diagnosis of lupus meant paying a high premium or being denied coverage altogether because lupus is considered a pre-­existing condition. improved Health Care Access

In 2008, when President Obama first ran for office, one of his key issues was a commitment to changing the health care system. He referenced time and time again the challenges of accessing care, similar to LaKesha Williams’ experience. People with chronic diseases like lupus are often tethered to the health care system. And although lupus affects people differently, frequent medical appointments and medication requirements cost an average of $12,643 per year, according to a November 2008 study in Arthritis Care & Research.

“In the chronic-disease community, we had been talking about these issues for years,” says Kim Cantor, senior director of government relations and public policy for the Lupus Foundation of America (LFA). “In this country, you need health insurance. There was a general sense that the country needed to deal with these issues. Finally, the federal government was willing to step up to the plate.”

The Patient Protection and Affordable Care Act, or ACA, aims to increase access to medical care for more than 32 million Americans who didn’t have health insurance when the legislation was signed into law in March 2010. Nearly one-third of those uninsured people are living with chronic diseases, such as lupus, according to a 2008 study in Annals of Internal Medicine. Many, like Williams, could not afford their employer-based health insurance, or lost their jobs and were not able to access other insurance because of a pre-existing condition. So far, several provisions have been implemented that impact people with chronic diseases like lupus. More provisions will go into effect by January 2014. 

A number of ACA provisions are helpful to people with lupus. These include banning insurance companies from denying coverage for pre-existing conditions; allowing young people up to age 26 to receive health insurance through a parent’s plan; and eliminating insurance coverage caps.

Coverage for Pre-Existing Conditions

Health insurance companies often refuse to pay for medical care associated with a condition the insured person had before he or she enrolled in that health plan. The ACA addressed this significant problem by preventing insurance companies from denying coverage to children under age 19 because of a pre-existing condition, effective Sept. 23, 2010. Beginning Jan. 1, 2014, the ACA will also prohibit insurance companies from denying coverage to adults with pre-existing conditions. To bridge the gap until then, the ACA created state-based temporary coverage called the Pre-Existing Condition Insurance Plan (PCIP).

Since July 2010, people with lupus and other chronic conditions have been eligible to enroll in their state’s PCIP if they are U.S. citizens and have gone without health coverage for at least six months. The PCIPs cover primary and specialty care, but the insured person is responsible for the premium.

Dawn Isherwood, R.N., part of the LFA’s National Health Educator Network, fields phone calls from people with lupus who are wondering about health coverage for the interim until all of the ACA’s provisions go into effect in 2014. Most have lost their jobs, and the biggest challenge with accessing the PCIP coverage is still cost, Isherwood says. “The prices go up depending on the monthly services,” she says. “Some of the prices depend on age.” Monthly premium costs can also depend on whether the PCIP is run by the state or by the federal Department of Health and Human Services. 

Expanded Benefits for Young Adults

The ACA also expanded coverage for young adults: Since September 2010, they have been eligible to receive coverage through their parents’ health insurance plans until age 26. “Before, you were kicked off at age 19,” Cantor says. (Full-time college students were eligible until age 22.) Health coverage is particularly important during this time because, while most people are diagnosed with lupus between ages 15 and 43, 15 percent receive the diagnosis before age 15.

“Before this provision of the ACA, it was difficult for people in their 20s with lupus to get [affordable] coverage because they had a pre-existing condition,” Cantor says.

No More Coverage Limits

For many people with lupus, the path to diagnosis can be long and arduous. Initial symptoms can be harsh and vague, and visits to multiple doctors and multiple tests are often required before an accurate diagnosis is made. And lupus is not a curable illness. It lasts a lifetime, so medical costs keep adding up.

It is not uncommon for health insurance plans to put a cap on the total amount of medical services covered annually. However, most plans also cap the amount of medical services covered over a lifetime. In both instances, expenses beyond the coverage caps must be paid out of the insured ­person’s pocket.

“People with lupus can have medical costs of thousands of dollars a year and hundreds of thousands over a lifetime,” Cantor says. “Also, the new lupus drugs coming to market will cost more than the older drugs, which means people could start to reach those annual and lifetime caps, but still not have insurance coverage that meets their true medical needs.”

This, too, was addressed by the ACA: Six months after the law went into effect, the lifetime cap was eliminated for any plan issued or renewed after Sept. 23, 2010. The law also placed restrictions on annual limits for employer-based and individual health coverage. By 2014, both of these caps will be eliminated entirely.

More to Come in 2014

Health care policy experts and people with chronic conditions like lupus are waiting to see how the remaining provisions of the ACA will be implemented by 2014. One that is being watched closely is the provision that establishes state health insurance marketplaces, also known as state exchanges. These marketplaces will replace the temporary PCIP coverage and allow Americans to compare health insurance plans offered by private insurers without fear of denial based on a pre-existing condition. “The marketplaces are where people can find a plan that best meets their needs,” Cantor says.

Probably the most critical of those needs is affordability. A range of plans, classified as platinum, gold, silver, and bronze, will vary in comprehensiveness and price. Cost considerations for these plans not only include monthly premiums, but also deductibles and cost-sharing mechanisms like co-pays and co-insurance. Platinum plans will be the most comprehensive, and likely the most expensive, while bronze plans will offer limited coverage at a lower cost.

Individual states can run their own marketplaces and negotiate with private insurers, or they can opt for the federal government to run the marketplaces. The enrollment period for the state marketplaces is expected to begin in October 2013. More than 25 million people will eventually be covered though these marketplaces, according to a Congressional Budget Office estimate.

The ACA also allocates income-based subsidies for people who may still be unable to afford coverage through the health insurance marketplaces but have too much income to qualify for Medicaid.

“It’s great that people will have choices, but they have to be really conscious of what their needs are,” Cantor cautions.

The cap eliminations, health insurance marketplaces, and subsidies are designed to prevent people like Williams from falling into a gap that often leads to debt or doing without medical care altogether. When Williams stopped working and could no longer afford her employer-based health insurance, she accrued more than $10,000 in medical debt. She is supposed to go to the doctor every three months, but she cannot afford to go to each appointment.

Covered by Hope

As part of her work at the LFA, Isherwood reaches out to care providers and local LFA chapters to find resources that will help with medical coverage. And when she talks to people with lupus who are overwhelmed, her advice is simple, but profound: “I tell them to always have hope,” she says. “We know it’s hard for people, especially when they don’t know the health insurance system. It can be daunting when they already don’t feel well.”

The key is to maintain a positive outlook, Isherwood advises. “We have to encourage them to never give up. When they wake up each morning, they should try to have something beyond themselves that they get up for. It could be their children, their spouse, or a favorite pet. Finding meaning until things improve is crucial.”

For Williams, that meaning came from relying on her Christian faith and praying that God would heal her. She is fighting to get Social Security disability insurance (SSDI) coverage, and she hopes the new ACA provisions will help her gain access to affordable health insurance. But she’s not allowing that to stop her from taking care of herself. She started to look for other forms of treatment, since traditional medicine was out of reach because of cost. She focused on changing her diet to avoid foods that cause inflammation. And she lights up when she talks about how getting—and performing—short regular massages have helped with joint pain, especially in her hands. “It’s amazing. I never have pain when I’m giving someone a massage,” she says. She has even earned a massage therapy license to help other people with lupus and make extra income.

“I’ve been in remission for more than a year and a half. I still have some pain, but it’s not nearly as bad,” Williams says. “I learned that even without insurance, I still have a child to feed, and I still have to live out my life’s purpose. I hope the new health care law will help, but my purpose is not to sit around waiting to see what happens.” 

“We know it’s hard for people, especially when they don’t know the health insurance system. It can be daunting when they already don’t feel well.”

For more information:

For an overview of the health care reform ­legislation, click here.

For more information on the Pre-Existing Condition Insurance Plans in your state, click here.

For more information on the forthcoming health care insurance marketplaces, click here.