Aug. 30, 2004 – Holland Rainey always thought her family had good health insurance -- until she received a phone call that would change their lives forever.
The family was already in the middle of a crisis. Her son, Nicholas, suffered from chronic depression and severe mood swings associated with bipolar disorder and had been undergoing treatment at a psychiatric hospital in Tennessee. Then, on the 179th day of treatment -- roughly halfway into his projected treatment plan -- a representative from the hospital called Holland and said her insurance would only cover one more day in the hospital.
Nicholas was sent home several hours later.
The Raineys were distraught. They had no way to pay for Nicholasâ€™ expensive sessions with therapists and psychiatrists. "Just because the insurance went away, it doesnâ€™t mean the mental illness did, too," Holland said in an interview this week. Within six months, her sonâ€™s behavior landed him in front of a Juvenile Court judge, who placed him back in the same hospital under state custody. This time, the treatment was less thorough, and the hospital quickly discharged Nicholas to foster parents.
But Holland said the foster parents did not take Nicholasâ€™ mental illness seriously, and did not seek treatment. Just before Thanksgiving in 2002, Nicholas killed himself. He was sixteen years old. Six months later, his father did the same. His sister also attempted suicide, and was hospitalized for several months until the insurance company ordered her to leave because she was no longer actively suicidal.
Every year, thousands of people with mental illness must struggle to stay healthy despite insurance plans that limit the maximum number of psychiatric hospital stays, therapy visits, and other treatment.
However tragic, the Rainey familyâ€™s story is not unique. Every year, thousands of people with mental illness must struggle to stay healthy despite insurance plans that limit the maximum number of psychiatric hospital stays, therapy visits, and other treatment. Unlike coverage for diseases like cancer or AIDS, coverage for mental illness is often capped at certain levels regardless of patientsâ€™ needs.
Now, a bipartisan group of lawmakers, advocates, doctors and people living with mental illness are calling for passage of a bill that would mandate comprehensive and equal mental health coverage on a national level.
Last February, Senator Edward Kennedy (D-MA) and Senator Pete Domenici (R-NM) introduced the Senator Paul Wellstone Mental Health Equitable Treatment Act, which would would require companies with more than 50 employees to provide health insurance plans with equal coverage for mental and physical illnesses. Under the bill, named after the late Minnesota senator, himself a long-time advocate for mental health coverage, health plans that covered physical illness would be required to cover mental illness as well.
Although the legislation has 69 Senate and 246 House co-sponsors and the support of over 300 health organizations, including the American Medical Association, it has languished in various committees. The Senate is expected to eventually bring it to a vote after some negotiations, but the bill is completely stalled in the House, where Speaker Dennis Hastert (R-IL) has refused to let it come to a vote. Even President Bush has expressed support, although some of the billâ€™s proponents complain that he has not done much work to see it passed.
According to the World Health Organization, suicide accounts for more annual deaths worldwide than homicide or war. For some mental illnesses, like bipolar disorder, the mortality rate is the same or worse than for certain kinds of cancer.
Without pressure, many are skeptical that Hastert will change his handling of the bill. In 2003, according to an article in Washington HealthBeat, he joked to reporters: "They want to make the co-pays the same for a broken leg and a mental health condition. What mental health condition is at parity with a broken leg?"
Hastertâ€™s office has not returned calls for comment.
Mental health advocates say that the bill is urgently needed, and that any additional delays will only result in more tragedy. "Everyday that lawmakers wait to act on this is a day that folks are suffering needlessly," said Christopher Burley, spokesperson for the Judge David L. Bazelon Center for Mental Health, a legal advocacy group for people with mental disabilities.
Mental health advocates say recent research bolsters their argument. Although for many years doctors, insurers and the general public believed physical and mental illness had little in common, that thinking has changed in the past several decades. New exploration into the biological origins of diseases like bipolar disorder and schizophrenia has led many to view mental illness like any other condition. The flood of memoirs written by people living with mental illness has also contributed to a change in public perception.
Ralph Ibson, vice president for government affairs at the National Mental Health Association (NMHA), the nationâ€™s oldest and largest mental health nonprofit organization, said the change in the way mental illnesses are viewed has had an important effect on health insurance coverage.
"I think there is far greater awareness that mental health problems are real and they are treatable," Ibson said. "When people are made aware that there are access barriers they are surprised and see that as inequitable. I think there is a clear sense that thereâ€™s no real difference between a mental illness and Parkinsonâ€™s disease. It then becomes untenable to be imposing arbitrary limits on one."
Health experts are also quick to point out that the devastation caused by mental illness sometimes surpasses that caused by other illnesses. According to the World Health Organization, suicide accounts for more annual deaths worldwide than homicide or war. For some mental illnesses, like bipolar disorder, the mortality rate is the same or worse than for certain kinds of cancer.
In the past fifteen years, many members of Congress became aware of the lack of comprehensive mental health coverage and started working on legislation to reform the insurance industry. In 1996, Congress passed the Mental Health Parity Act, which prevented insurers from placing unequal monetary limits on mental health treatment. Insurers soon learned to skirt the intent of the law, which has since expired, by placing limits on the number of hospital stays or therapy sessions, instead of on the cost of treatment.
At the same time, states began adopting their own mental health parity requirements. Currently, 33 states have some form of parity laws that go beyond the requirements of the 1996 law; nineteen of these require full parity, stating that mental health benefits must be included in all group plans and that coverage, in terms of dollar and service limits, be equal. Vermontâ€™s legislation is by far the most comprehensive, mandating that all companies, including small businesses, provide coverage for all mental illnesses.
However, several polls have shown overwhelming public support for a broader federal law mandating coverage. Perhaps intimidated by public opinion, few politicians have come forward publicly to voice their opposition. Instead, several senators have taken advantage of an anonymous procedure to place the vote on hold. "Nobody wants to be on record saying that folks with mental health needs should be arbitrarily denied access to services," the Bazelon Centerâ€™s Burley said. "I think the opposition has been somewhat quieter in voicing their concerns."
While politicians have been hesitant to openly oppose the legislation, employerâ€™s groups and the health insurance industry have been outspoken in lobbying against the bill. Edwina Rogers, vice president for health policy at the ERISA Industry Committee, a trade association for major employers focused on employee benefits, referred to the bill as an "administrative nightmare," adding that it would constitute a burdensome expense for employers.
Susan Pisano, spokesperson for Americaâ€™s Health Insurance Plans, a trade association representing almost 1,300 insurers, agreed. "I think everyone agrees on the importance of access to good mental benefits," she said, but added that increased costs for mental health coverage could lead employers to drop employee health coverage altogether.
"There is somehow a view that the mandate imposes something on insurance," Pisano said. "In fact, it imposes something on employees and consumers. They are really the people who pay for the mandate."
Numerous studies on the costs of equal mental health coverage refute this argument, and instead predict small increases in health insurance premiums. The Congressional Budget Office estimates that the bill would only increase premiums by .9 percent. The National Mental Health Advisory Council estimates an increase of about 1.4 percent. Many mental health advocates also argue that comprehensive mental health insurance might even reduce costs because, much like other illnesses, people would seek care in the early stages rather than in an emergency room.
For Gerard Werlein, all the arguments about cost mean little. His son Andrew, now eighteen, was diagnosed with bipolar disease a year and a half ago. Andrew has attempted suicide five times. The familyâ€™s insurance only allows twelve psychiatric visits a year, and "sometimes Andrew needs two a week," Gerard said. "And when he needs total 24-hour care after suicide attempts or when heâ€™s really, really struggling, that care can run $3,000." And that, he said, is just for the bed, before medication and doctors are factored in.
In order to pay for Andrewâ€™s treatment, the family has remortgaged their house twice, cashed in their life insurance policy and used up all their savings and investments. "If my son had cancer or diabetes, everything would be covered," Gerard said. "This is just inhumane. Mental health care shouldnâ€™t just be for the wealthy."
After several tough years, Andrewâ€™s condition is currently stable, although he will need follow-up care and medication for the rest of his life. And, when he turns nineteen at the end of November, he will no longer be eligible for Medicaid. He has already been turned down for Social Security. Gerard is dreading that birthday. "I donâ€™t know what Iâ€™m going to do," he said.
"My true feeling is no matter what itâ€™s done to our family financially, heâ€™s still alive and thatâ€™s whatâ€™s important," he added. But the stress has taken its toll. The family had to spend the money they had been saving to afford college for their two other children.
Gerard has trouble focusing at work out of constant worry about how he will pay for his sonâ€™s medical care. "Iâ€™ve been feeling so lousy," he said. "Iâ€™m wondering if Iâ€™m getting an ulcer, but I donâ€™t have time to think about it."
If Andrewâ€™s care was covered by insurance, Gerard believes everything would be different. "Youâ€™re driving back from the hospital late at night worrying about bills," he said. "This has to change."
Many activists believe it is just a matter of time before mental health parity becomes federal law. "I would analogize it to civil rights legislation," said Ibson of the NMHA. "This is long overdue. Iâ€™m confident given the merits of this case that fair-minded legislators will enact it."
For Holland Rainey, any law will come too late. She now spends her time speaking to school groups and other organizations about her familyâ€™s experience in the hopes that she can prevent other families from losing a child to suicide. Still, she remains frustrated that, although she might convince a family to get treatment for their child, they often cannot afford it.
She points out that US lawmakers already have comprehensive mental health insurance as part of their benefits package. "The people who will vote against [the Wellstone Act], their teenagers will never get turned away or sent home from treatment," she said. "We have politics hard at work here."
As for the insurance industryâ€™s argument about costs, Holland has a simple answer: "It impacted our bottom line. We buried our son."