The following article appeared on the front cover of the Sunday, February 22 1998 edition of the New York Times.
February 22, 1998
Couples Battle With Insurers Over Infertility
by ESTHER B. FEIN
NEW YORK -- Roberta Kraft is $38,700 in debt. She owes money on her Visa card. She owes money on her American Express card. She owes money to her parents and to her best friend from college. She and her husband have not bought new clothes in two years and live in a cramped one-bedroom apartment because they have spent all their discretionary income -- and a good chunk of their future earnings -- in a single pursuit: trying to have a baby.
In her still unsuccessful quest, Ms. Kraft has economized in ways she never imagined. She bought fertility drugs from a pharmacy in Mexico because they were cheaper than those sold in her Upper East Side neighborhood. She withdrew money from a retirement account, paying steep penalties. She sold a pair of diamond earrings she had inherited from her grandmother, tearfully rationalizing that her grandmother would have given her blessing.
Ms. Kraft has gone to such lengths because her insurance company will finance few of the procedures she needs to become pregnant. And so, in addition to the emotional ordeal that they face, she and her husband are also struggling with a severe financial crisis.
This crisis is striking a growing number of couples as scientists develop new treatments to combat physical problems that prevent pregnancy -- treatments that few insurers are willing to cover and that few couples can easily afford.
To patients like Ms. Kraft -- who would speak only if her maiden name was used and her husband was not identified -- and the doctors who treat them, such refusals by insurance companies amount to discrimination. Infertility, they say, is a disease, like diabetes or emphysema, whose treatment should be covered by any basic insurance policy. When it is not, they argue, patients go without crucial medical care that could lead to pregnancy, or they pay enormous expenses on their own or get inappropriate care simply because it is treatment their insurance companies will pay for.
But others question whether the inability to become a biological parent is a medical condition or a social problem. And they ask whether society can, or should, pay for costly treatments that benefit a narrow group of people when growing numbers of others lack insurance for even basic health care.
"The debate comes down to this," said Uwe Reinhardt, a health-care economist at Princeton University, "Is having your own offspring with your own genes a matter of human right? And if you can't accomplish that on your own, do you have the right to have your efforts to achieve it financed?"
The issue came to the fore last month, when Aetna, one of the nation's biggest health insurers, announced that its U.S. Healthcare health plans would no longer offer coverage for advanced infertility treatments. Company officials said that because few other health plans offered such benefits in their basic packages, women with fertility problems had been disproportionately joining U.S. Healthcare plans, saddling the company with an unfair share of costs for infertility treatments.
Some States Require A Degree of Coverage
Thirteen states, including New York and Connecticut, require health plans to offer some coverage of infertility treatments. Two states, Massachusetts and Illinois, mandate that in vitro fertilizations be included.
But these regulations do not cover many workers because many businesses -- those that insure themselves under provisions of a 1978 federal law -- are exempt from state jurisdiction. This applies to many more people than one might imagine, since many large companies self-insure and use a commercial carrier to administer the plan.
Several recent studies have found that it would cost less than $3 per member per year if coverage was mandated for advanced reproductive technology -- procedures that manipulate the union of sperm and egg.
In vitro fertilization, in which eggs are combined with sperm in a laboratory dish and the fertilized embryo is implanted in the woman's uterus, is the most common of these procedures. The procedure costs about $8,000 for each attempt, and most couples try several times before they succeed.
About 6.1 million women in the United States, or 10 percent of the women of reproductive age, are infertile, according to the most recent figures from the Federal Government's National Center for Health Statistics. Of these, about 600,000 have tried assisted reproductive technology in their attempt to bear children.
"I hate talking about money in relation to my kids," said Pamela Madsen, whose two sons were conceived through in vitro fertilization, "but my mother always jokes that she holds the mortgage on them".
Mrs. Madsens experiences in what she calls the "ovarian Olympics" led her to become president of the New York chapter of Resolve, a support group for people with infertility problems.
Lacking comprehensive insurance to finance many of these procedures, couples with fertility problems describe a web of efforts to pay for the medications and therapies they need to try to have a child.
The first step usually involves exhausting their savings. The next step is signing up for a host of credit cards and charging up to their credit limit. If they can, they usually then borrow from relatives or friends.
"We don't go to the movies, haven't taken a vacation in so long, and I can't remember the last time I bought new clothes," said Elizabeth Prike, a high school teacher from Woodside, Queens. Her 4-month-old son, Thomas, was born after she took fertility drugs and was artificially inseminated with sperm from her husband, Stephen, a production manager at a box-making plant.
Mrs. Prike's insurance company paid for her drugs, but did not cover any office visits, blood tests, sperm treatments or the insemination itself, leaving the couple more than $10,000 in debt to Brooklyn IVF, an infertility clinic. To help pay the collection agency handling their account, Mrs. Prike said, she went back to work sooner than she had hoped.
"I just felt cheated by my insurance company," said Mrs. Prike, who tried to get pregnant for seven years. "I paid into the plan and then my disease isn't covered. That's just not fair."
George J. Annas, chairman of the health law department at Boston University's School of Public Health, disagrees. "Not having these treatments covered is unfortunate, but it is not unfair," said Mr. Annas, arguing that assisted reproductive technology is an elective procedure, not a necessity.
"In fact, people don't have the right to any health care in this country except emergency care," he noted, adding that if the country had national health insurance, "then we should think about adding this as a benefit."
"Not that people shouldn't have access to these procedures," he added. "If you want them, though, you have to figure out how to pay for them. If an insurance company offers it, also fine. But to mandate it, given the growing numbers of uninsured people, makes no legal, economic or health care sense."
Medical Decisions Based on the Program
Doctors across the country say the way the system tends to work now, many women end up pursuing inappropriate, often expensive, treatments that are unlikely to solve their fertility problems because certain procedures are covered by insurance on the theory that they are designed to correct a physical problem rather than to address infertility -- a point that several insurance officials conceded privately was economically irrational.
The most common example cited is surgery to clear blockages in the fallopian tubes. Such surgery, which is highly invasive and requires anesthesia, usually costs about $12,000. Sometimes, it is enough to allow once-infertile women to conceive on their own. Often, women undergo the procedure several times, to no avail, each vain attempt covered by insurance.
Many reproductive specialists argue that given the option, they would often forgo the surgery and perform in vitro fertilization, which they believe in many circumstances has a greater chance of producing a pregnancy. But since most insurance plans don't cover such assisted technology, many patients who cannot afford to pay out of pocket undergo repeated tubal surgeries, hoping they will beat the odds.
"People make terrible medical decisions because of their insurance coverage," said Dr. Kenneth Ryan, professor emeritus of obstetrics, gynecology and reproductive biology at Harvard Medical School and chairman of the ethics committee of the American Society of Reproductive Medicine. "The system as it exists makes no sense."
After two surgeries to clear blocked tubes failed to help Anette DOrlando become pregnant, her doctor urged her to try in vitro fertilization. Mrs. DOrlando and her husband, Pat, were relieved when the nurse told them that their insurance company had verified that the procedure would be covered.
Mrs. DOrlando began a painful drug regimen to stimulate her ovaries to produce extra eggs. But a day before the doctor was set to harvest the eggs, the insurance company rejected the claim for payment. Frantic, the DOrlandos paid for the procedure in cash and charged $5000 on their Visa card.
Mrs. DOrlando is now pregnant and the couple is fighting with the insurer.
"They paid for these operations that didnt work and not for the one that did," said Mrs. DOrlando, "and now Im starting a family with a big debt hanging over me."
Crossing the Border For Bargain Drugs
To save money, some people resort to measures that can be dangerous. Many women buy drugs from overseas pharmacies. Others, alerted through word of mouth or postings on the Internet, buy or get drugs from other women who have leftovers from their own prescriptions -- a prevalent practice that is illegal and, doctors warn, potentially dangerous since there is no guarantee that the medications are not expired or that they actually are what they purport to be.
Theresa Grant drove 50 miles from her home in Tucson, Ariz., to the Mexican town of Nogales, where she bought the drugs she needed for her treatments for one quarter to one sixth the price at her local pharmacy.
"I saved thousands of dollars," said Ms. Grant, who runs a family restaurant and is a co-founder of the International Council on Infertility Information Dissemination, an information and advocacy group for people with fertility problems.
But Ms. Grant said that she would not have taken the risk had her doctor not recommended the specific pharmacy that she went to.
From her home in Monsey, N.Y., Chedva, who spoke on the condition that her last name not be used, runs a kind of drug cooperative for needy, infertile women from the local Orthodox Jewish community.
"People call in saying, 'I have extra Pergonal that maybe someone else can use,' and other people call saying, 'Maybe you have some Pergonal because I can't afford my prescription,"' said Chedva, who spoke as she worked on an art project with her 5-year-old son, conceived after 13 years of infertility treatments. "We bring them together."
She acknowledged the illegality and dangers, but said women in this situation really have no choice, and she said she is very cautious about the donated drugs she accepts.
For her own drugs, she said, she sent her prescription to relatives in Israel, who filled it for a third of the cost locally. To defray other treatment costs not covered by insurance, she took an interest-free loan from a local charitable organization, one of many set up by Jewish communities around the country to help childless Jewish couples pay for infertility procedures.
"We are drowning in more and more debt, every month more," said Chedva, who estimated that she and her husband, a Talmudic scholar, owe about $40,000 to friends, relatives and the community fund. She said they are trying to put together enough money to try to conceive another child.
Dr. Richard Grazzi, a fertility specialist who runs Brooklyn IVF, said it was painful to him, as a practitioner, to see how often money issues intrude between him and what he thinks is the best treatment for his patients.
At first, he was lax in making sure that uninsured patients had the means to pay the clinic for treatment. But mounting debt forced them to be stricter with payments. To help patients who cannot afford care, his office has worked with a local branch of Citibank to arrange for "infertility loans." The program was started by a bank officer who was a patient in the clinic.
"Nobody who hasn't experienced infertility can understand what these couples go through," Dr. Grazzi said. "It's a medical crisis, a personal crisis, a sexual crisis, religious, existential and marital crisis," he said. "When you throw financial stress on top of that, it's just a setup for disaster."
