Few illnesses are as prolonged and as disabling as chronic fatigue and immune dysfunction syndrome (CFIDS). Our unique complex of symptoms can cripple us physically, mentally and emotionally, draining not only our energies, but our financial resources as well. No current treatment is totally effective against this devastating affliction, and a cure may be far off on the horizon. If there has ever been a need for insurance to replace income lost to prolonged disability, we should surely be its beneficiaries. Yet despite our best efforts to provide convincing medical evidence, it appears that a disproportionate number of our claims for long-term disability (LTD) benefits are denied.
Trouble in the Mailbox
A chill ripples through me when I hear the mail drop through the slot onto the floor. The sound of the brass flap slamming shut against the metal jamb brings me reluctantly to my feet, and I'm slightly breathless as I pick up the pile of letters. Although I am waiting for my LTD claim to be approved for CFIDS, I'm relieved when none of the envelopes bear the etched lighthouse logo of my former employer's insurance carrier. After three years of delays, denials and distortions, I've learned to expect trouble.
This mailbox scenario is repeated daily in homes and apartments throughout America. More than a hundred claimants I've encountered in support groups, on-line forums and Internet mail groups, all disabled by CFIDS and the closely related conditions of fibromyalgia (FM) and multiple chemical sensitivities (MCS), have shared their stories of anger, frustration and disappointment with me. All expected to begin receiving benefits soon after filing claims supported by physicians' assertions that they suffered from a disabling physical illness and were too ill to work.
After struggling through elimination periods of three to six months before becoming eligible for long-term disability benefits, almost all of these very sick and financially challenged patients have been forced to wage prolonged and costly legal battles with insurance companies which have broken their promise to provide financial security in the unlikely event of a life-challenging, career-shattering illness. Although many insurance companies are involved, these claimants' experiences are strikingly similar.
An informal survey of more than 100 persons with CFIDS (PWCs) struggling with their LTD carriers was taken by the author of this article. Most were repeatedly delayed another four to six months, with some waiting a year or longer for payments to begin. Others received no benefits at all. Insurers insisted 53% of the claimants were "mentally ill," limiting their benefits to 24 months; 25% were told they had "no objective evidence of disability" and paid nothing; 10% were persuaded to accept small settlements in exchange for dropping their claims. Only 12% of those who applied are currently receiving benefits for physical illnesses, yet even these fortunate claimants report being subjected to repeated medical evaluations, surveillance, harassment and the abiding fear of being cut off.
Claimants who succeed in the battle for benefits tend to be savvy, articulate and persistent individuals with the resources to obtain sophisticated medical evidence and aggressive attorneys. Poorer, older, less-educated and extremely ill claimants seldom fare as well. The sickest and least privileged among us may be easily brought down by insurance company employees who find them fair game for harassment, deception and intimidation. Their stories are the most disturbing I have encountered.
Your Condition is Subject to a Two-Year Limit
Most LTD policies contain a two-year limitation for benefits paid due to mental or nervous conditions, and insurance company employees have learned how to steer our claims into this category. More than half of those who claim benefits for CFIDS, FMS or MCS are labeled mentally ill, often by an on-site physician who has never seen the claimant and whose identity and qualifications are unknown. If the claimant's long list of CFIDS symptoms includes depression, anxiety or panic attacks, these symptoms will be magnified, while pages of medical evidence supporting the claimant's physical disability may be ignored. If the claimant is being treated by a psychotherapist or uses antidepressants for symptomatic relief, the insurer may insist that the claimant's primary condition is psychological. The highly restrictive criteria developed to screen patients for research purposes are widely misused by insurers who insist that the presence of any past or current psychiatric diagnosis precludes a finding of CFIDS.
A CFIDS patient wrote: "Not only did my insurer insist that my symptoms were due to major depression, but they also demanded that I be under the care and treatment of a psychologist or psychiatrist, and that I provide a letter certifying disability from one of these doctors before they would pay any benefits." A healthcare worker, still hoping to return to work, was deeply distressed about the insurance company's diagnosis, and agreed to anything her claims representative demanded in exchange for assurance that her employer would never be told she had been classified as mentally ill. Patients and their physicians have even been promised faster approval of claims if they apply for benefits on the basis of depression instead of CFIDS. In September 1995, an insurance company field representative sat in a claimant's living room and stated, "From the beginning, we have considered CFS a mental and nervous disorder, therefore limiting payment to two years."
Accidental disclosure of confidential information is often used to intimidate employees applying for medical and disability benefits. Despite assurances that medical information will not be shared with employers, letters from disability insurers to claimants discussing their alleged psychiatric conditions are sometimes copied to employers, violating claimants' rights to privacy. The American Psychiatric Society has documented many instances of employee medical and psychiatric information being placed in the hands of employers or coworkers with embarrassing and even tragic results. In the book Privacy in America, David Linowes reports that some insurance companies prefer to have claims processed through employers' personnel departments as a way to pressure employees not to use their insurance.
Your Symptoms are All Subjective
Those we interviewed who managed to escape the mental illness classification may be denied because the insurer insists that their subjective symptoms do not provide objective evidence of disability. While there is no single method of denial applied to all claimants, and new excuses to deny claims have developed over time, the policy of magnifying minor evidence to limit or deny claims has been consistent. One claimant was denied for not providing evidence of a sore throat, while others who documented this symptom were also denied. Another claimant was told that he must provide objective lab testing to support his CFIDS diagnosis. When he inquired what tests he needed to prove his claim, he was told that the company knew of none.
Sometimes the reasons for denials are trivial and appear to ignore all medical evidence. One claimant's benefits were terminated immediately after a claims worker arrived at her home without an appointment and reported, "she did not look tired and had no dark circles under her eyes"; another was told she was "just tired and needed a vacation". A woman at the peak of her career was accused of applying for disability because her husband had retired; another professional woman whose symptoms had gradually worsened over the years was denied because the insurer learned her position was going to be eliminated. A fibromyalgia patient lost his benefits after a surveillance team videotaped him working in his garden, an activity suggested by his doctor.
Independent medical examinations (IMEs) are frequently scheduled by insurers to rebut medical evidence provided by claimants' physicians. Examiners selected by the insurers are often biased against or ignorant of CFIDS. Several claimants report that the examiner admitted knowing nothing about CFIDS or told them that "CFIDS was not a valid diagnosis". A woman with such severe symptoms that she could stand for only a few minutes was pronounced capable of returning to work after a physical medicine specialist took measurements of her arms and legs. A patient with MCS was required to attend several examinations in an office which had just been remodeled and repainted. Yet another claimant learned her examiner had publicly stated that "CFIDS and MCS are both depression." When she asked for another examiner, she was told he had been selected randomly from a list of qualified physicians by an independent contractor. A call to the independent contractor revealed that the insurer had asked specifically for this examiner and no other.
Most LTD contracts require beneficiaries to apply for Social Security Disability Insurance (SSDI) because SSDI benefits are deducted from the amount the LTD insurer must pay. Although perfectly legal and considered by the insurers to be smart business practices, many of the circumstances related to enforcement of this and similar clauses are suspect.
A middle-aged woman who was still capable of working part time was pressured by her LTD insurance company to apply for Social Security. When Social Security told her she had to leave her job to become eligible, she reluctantly gave up her career. Then the insurance company claimed she was "depressed" and allowed her only two years' disability for her "mental disorder." Another claimant was threatened with loss of her LTD benefits if she did not obtain Social Security Disability. When she was too ill to appeal a denial from Social Security, her LTD benefits were immediately terminated.
After learning that their SSDI benefits had been approved, several claimants reported that their LTD insurers sent them letters demanding immediate repayment of several thousands of dollars in LTD benefits, yet offered to cancel these debts if the insureds would agree to drop their LTD claims, giving up all rights to future benefits.
Some tactics used to investigate LTD claims violate rights to privacy guaranteed by the U.S. Constitution. One company sends claimants a routine supplemental information form; just above the signature line, in much smaller print, is a blanket release authorizing access by anyone designated by the insurer to all of the claimant's records, including medical treatment and history; psychiatric records; drug and alcohol use; financial, credit and employment records; and any other data or records regarding the claimant's activities. Claimants have complained after being followed and videotaped for several days at a time. Although it is illegal for insurers to order surveillance of persons to whom they are not paying benefits, one woman reported that her fiancé was not only surveilled, but received a background check as well. A family reported video surveillance so intrusive that it violated their marital privacy and caused their young children to become anxious and distressed.
Harassment of Physicians
Not even the physicians who treat us are exempt from harassment. On the chance that they might produce evidence which could be used to limit or deny claims, many physicians are required to submit their office notes and provide detailed reports at frequent intervals. When physicians are unable to keep up with these demands, their patients have been threatened with loss of benefits. One of the nation's leading CFIDS experts, was required to explain the process by which he diagnosed CFIDS. The claims representative, who used the terms "chronic fatigue" and "chronic fatigue syndrome" interchangeably, declared his report "inconclusive as to a diagnosis of chronic fatigue." Insurers have also deliberately distorted and taken out of context physicians' statements in order to deny benefits to their claimants. Physicians who wrote to insurers protesting that their words had been twisted to mean the opposite of what was intended were simply ignored.
An Unreasonable Standard of Proof
Insurers apply a double standard to the evidence used in evaluating our claims. They insist that patients with CFIDS, fibromyalgia and MCS provide irrefutable objective evidence of their disabilities, yet reports from the insurers' own medical departments are not subjected to the rigorous scrutiny which reports from claimants' physicians must endure. The qualifications, medical experience and specialities of the insurers' anonymous "in-house" physicians are unknown, and the outside physicians paid by insurers to perform independent medical examinations are often grossly unsuited to diagnose patients with these complex, poorly understood conditions. After waiting several months for a decision, a denied claimant may simply be told that "a preponderance of medical evidence points to a psychological illness, although this preponderance is never produced. Similarly, claimants who asked for ERISA reviews (see below) from one insurer received identical, boiler-plate letters asserting that "our decision still stands." Those who asked what was needed to perfect their claims were never given this important information.
Insurers Protected by Federal Laws
The multi-billion dollar insurance industry is protected by a 1987 U.S. Supreme Court decision that greatly restricts the relief available to claimants in cases where disability insurance is provided by an employer. Employee benefits, including group LTD insurance, fall under the jurisdiction of an arcane federal law called the Employee Retirement Income Security Act of 1974, or ERISA (see "ERISA Protects Insurers" on page 33). Under the current reading of ERISA laws, claimants may sue to recover benefits in federal courts, but are precluded from filing charges of bad faith against insurance companies in state courts. Compensation for emotional distress or punitive damages is not allowed under a narrow interpretation of the definition of benefits. Thus, there is little incentive for insurers to resolve claims promptly or fairly, and attorneys are often reluctant to bring these cases to trial because court costs can approach or exceed potential recovery. Hiding behind a law originally intended to protect employee pensions, LTD insurers can delay, deny and distort our claims for years with almost total impunity.
In contrast, claimants with individual LTD policies have less difficulty with their claims because they can sue insurers for bad faith and receive compensation for emotional distress and punitive damages under state laws governing their policies. An examination of the approval rate for individual LTD claims and the standard of proof required for success may reveal substantially more ethical -- and favorable -- handling of CFIDS, fibromyalgia and MCS claims.
There are also powerful incentives for insurance company employees to deny claims: profitable companies pay substantial bonuses to employees who help them realize healthy profits. In February 1996, UNUM, the nation's largest disability insurer paid $18 million in bonuses to employees who contributed to the company's greatly improved performance in 1995. And there is little doubt that ambitious claims managers can advance their careers by saving the company's money the best way they know how: by denying or closing claims.
New Limits May Restrict Benefits
Until very recently, insurers have had to label claimants "mentally ill" to limit payouts to two years. As of this writing UNUM has received permission in 44 states to write new policies which limit benefits to two years for "self-reported symptoms, or illnesses where tests fail to identify an underlying cause"; applications are pending in the six remaining states. UNUM has also begun offering employers a discounted LTD policy which caps benefits as 12 months for self-reported illnesses. While UNUM doesn't specify particular illnesses that would receive limited benefits, the restrictions would apply in some cases of back and muscle pain, fatigue, headaches and other complaints if medical tests fail to show an underlying cause.
Other companies are following UNUM's lead. Standard Insurance Co. has drafted new policies limiting lifetime benefits to two years for "chronic fatigue conditions" or "allergies or sensitivities to chemicals or the environment." Fortis lists specific conditions, such as chronic fatigue, that are subject to new limits. MetDisAbility plans to introduce a two-year limit for chronic fatigue syndrome within the next few months, and Cigna is developing contract language that would cap benefits for "self-diagnosed" illnesses at one or two years. UNUM "will decide on the basis of circumstances in individual cases."
The legality of the two-year mental illness limitation is currently being challenged under the Americans with Disabilities Act (ADA). Several cases are pending in federal courts, and the Equal Employment Opportunity Commission (EEOC) has asserted that it is improper to differentiate between mental and physical illness in LTD policies. It should be noted that the protections for disabled persons available under the ADA also apply to persons who are perceived as having a disability, for example, being labeled by an insurer as "mentally ill." In this period of insurance industry consolidations,* joining coalitions with other disability rights organizations may help us fight all two-year limitations and other abuses by the powerful insurance industry.
In 1994, Dr. Michael Kita, medical advisor to UNUM, stated: "There has been a view that (chronic fatigue syndrome) is some form of mass hysteria or overdiagnosis by doctors or depression. It doesn't look that simple anymore. There does appear to be something real happening." Unfortunately, the "something real happening" is that LTD claims are still being denied, even for claimants who meet CDC criteria and have satisfied stringent SSDI guidelines for total disability on the basis of CFIDS. While it is impossible to blame this situation on a single insurer, the largest, most aggressive companies are making it increasingly difficult for smaller companies to honor claims and still remain competitive with the industry giants. And as more companies are swallowed up through mergers and acquisitions, CFIDS claimants who have been receiving benefits for years are being put on notice that their payments may soon be terminated.
Linowes, David, Privacy in America. University of Illinois Press, 1989. Page 122.
Jeffrey, Nancy Ann: Insurers curb some benefits for disability. Wall St. Journal, July 25, 1996.
Strosnider, Kim: UNUM will survive, thrive. Portland Press Herald, Feb. 10, 1996.
Johnson, Hillary: Osler's Web. New York: Crown Publishers, Inc., 1996;655.
Annie Bloom (a pseudonym) has been afflicted with CFIDS, FM and MCS since 1990.
If you believe you have been treated unfairly by your LTD insurer: 1. Write to your state insurance commissioner, providing as much objective evidence of unfair treatment as possible. Let the insurance commissioner know that people with your illness are often treated unfairly by LTD insurance companies and that your case is only one of many unjustly denied benefits. You can find toll-free numbers for most state insurance commissioners by calling directory assistance.
1. Document the following strategies used to delay and deny claims:
Repeated and unreasonable delays in processing your claim, including "lost" information;
Ignoring your doctor's diagnosis of a physical illness recognized by the CDC and defined by a specific set of symptoms;
Classifying your illness as "mental/nervous" despite reports from well-qualified physicians attesting to the contrary;
Insisting you have no objective evidence that you are disabled and unable to work, despite your physician's insistence that forcing you to return to work would exacerbate your illness;
Basing your denial on an obviously biased or unqualified "independent medical examination" or the opinion of an "in-house" insurance company doctor who has never seen you.
2. Send copies of ERISA complaints to your representatives in Congress, asking them to take action against unfair treatment of disabled persons by insurance companies who have found protection in these laws. If your policy is governed by state law, write to your representatives in state government.
3. Support the efforts of local, national and on-line CFIDS organizations to secure more just treatment for CFIDS, MCS and FM patients by the insurance industry.
The CFIDS Association of America
Advocacy, Information, Research and Encouragement for the CFIDS Community
PO Box 220398, Charlotte NC 28222-0398
800/442-3437 - fax: 704/365-9755 - Resource Line: 704/365-2343