Insurance insecurity: gay men and lesbians are not only more likely to go without health insurance, they have their own unique set of problems that comes with the lack of proper care.

During his 18 years as a state representative in Wisconsin, David Clarenbach not only helped author a gay rights law and elect other openly gay officials, but he fought to establish universal health care in the state, albeit unsuccessfully. So it was particularly painful, after he was dropped from his private health insurance plan in 2003, to learn that no insurance company would cover him because of his preexisting condition. Clarenbach, 50, was diagnosed with degenerative cervical spondylosis about 10 years ago. The disease destroys the cartilage of the vertebrae and causes chronic bone, muscle, and nerve pain, requiring him to take a morphine drip and 42 pain pills every day.

"No matter how much I paid for a premium, I was simply uninsurable," said Clarenbach, noting that his monthly pharmacy bill alone is around $3,000, while doctors' visits and tests ran an additional $1,500. "You can imagine how devastating that was to me both financially and otherwise."

Clarenbach is hardly alone among gays and lesbians in his plight to gain access to affordable health insurance. Today, the problem has reached crisis proportions across all sectors of society, with some 44 million people--15% of the population--lacking health insurance in the United States and millions more underinsured, according to statistics from the U.S. Census Bureau in 2003. An estimated 18,000 Americans die each year because they are uninsured and lack adequate medical care, according to the Institute of Medicine, which also says the United States spends around $100 billion each year on medical care for the uninsured. Unexpected medical expenses are also a leading cause of personal bankruptcy in America, experts say.

The problem is particularly acute in the gay, lesbian, bisexual, and transgendered population, where the ratio of uninsured individuals is about twice that of straight people. The reasons are manifold, experts say: Despite the rise in domestic-partner benefits, gays and lesbians in relationships are often locked out of health care benefits that are usually afforded spouses in married couples--the primary route to health insurance in the United States. Even where domestic-partner benefits exist, gay people may fear outing themselves at work to get those benefits, or they may not want them because of the extra costs involved.

Furthermore, gays and lesbians often avoid seeking health care from providers they fear might be homophobic. "Without a doubt, if gay relationships were recognized, either through marriage or civil unions, there certainly would be a higher percentage of gay, lesbian, bisexual, and transgendered adults who had health coverage than currently do," said Stuart Schear, a director for the Cover the Insured Week campaign based in Princeton, N.J., which is working to bring attention to the national health insurance crisis.

Gay doctors are quick to point out that lack of insurance will force people to delay getting treatment, which in turn leads to more medical problems and higher mortality rates. Without insurance, people typically forgo contact with a primary care physician and are often treated in emergency rooms, says Jason Schneider, a clinical instructor at Emory University in Atlanta and an attending physician at the campus-affiliated Grady Memorial Hospital, which serves many indigent gay and lesbian patients. Schneider, who is also a board member of the Gay and Lesbian Medical Association, adds that fear of homophobic doctors exacerbates the situation for those without health insurance.

That was the case for Joe, a resident of New York City who declined to reveal his full name. Last year Joe ran a fever of 105 degrees and went to an emergency room in Minneapolis, where he lived at the time. Never divulging his sexual orientation to his attending doctors, he was diagnosed with a form of Lane disease when in fact he was seroconverting. Joe says he was given an HIV antibody test that crone back negative. Since he lacked health insurance, he did not have access to the more costly viral lode test, which would have revealed that he was HIV positive. Thinking he was negative, Joe infected his boyfriend, whom he met this year. "If I would have had health care insurance and a private doctor to go to, I could have sat down and asked questions and gotten advice," he says. "When you are in the ER you are just a number and they are just pushing you through."

The health care situation for gays and lesbians is particularly hard to study because government surveys, such as those performed by the Centers for Disease Control and Prevention and the National Institutes of Health, typically exclude sexual orientation as a category. "We need better information on people by sexual orientation to document the differences and figure out why those differences exist so the government can take policy actions to reduce those inequities," says Lee Badgett, an economist at the University of Massachusetts Amherst.

This year Badgett and her colleagues pored through seven years' worth of the federal government's Current Population Survey, a monthly labor force report that includes data on topics such as health insurance for unmarried and married couples. Badgett found that 18% of men and women who are in a same-sex relationship lack health insurance, compared to 11% of married heterosexual couples. She also found that 15% of the partners of gays and lesbians with insurance were uninsured themselves, compared to only 4% of married spouses. "Most people get insurance through their employers or their family members' insurance," Badgett says. "If you don't have access to your own insurance or a family member's insurance, you can buy it, but it is very expensive. If your income is no higher than a married couple's, you have no more resources to pay for it."

Kim Mills, education director for the gay rights group Human Rights Campaign, said roughly 16% of workers in the United States have access to domestic-partner benefits through their jobs, but a majority of people work for small companies that don't offer benefits at 'all. And there are other obstacles. Domestic-partner health benefits are counted as extra income, and employees may not want to take on the added tax burden. "For folks who are not making substantial amounts of money--which is a lot of people in our community--having to pay that extra tax is difficult," Mills said. "And it is still not universal that people can feel comfortable coming out at work."

These reasons certainly resonate for Clarenbach, whose partner of three years works for a small firm that does not offer domestic-partner benefits. Despite his medical condition, "I would be eligible for my partner's health insurance coverage" if same-sex couples were allowed to marry, Clarenbach says, adding that he is now getting insurance through a state aid plan.

But qualifying for public-health programs like Medicare and Medicaid can be a trying and frustrating experience. Lesbian author, columnist, and reporter Victoria Brownworth, 48, a resident of Philadelphia, says she has multiple sclerosis, had several cancer surgeries in the past, and is legally blind in one eye. She also is confined to a wheelchair. Though she applied for Social Security disability insurance three times, she says she was rejected because they did not think she was disabled enough to prevent her from doing her job. "I certainly fall into the disabled category: I can't work full-time and I live below the poverty level," she says. "I found the process Byzantine beyond belief, and it just wore me down."

Brownworth's only option is to buy private insurance, she says, which costs $540 a month, nearly half of her income. In the last six months she has been dropped from her insurance plan twice for "bureaucratic" reasons, including failure to pay her premium, though she claims her checks were always cashed. "It's a huge problem mince I have MS and recurring cancer," she says. Brownworth summed up the situation for uninsured gays this way: "When you are a member of a minority and you don't have access to the larger power structure, you are screwed."

Quittner has also written for The New York Times and Business Week.