Infertility Cases Spur an Illicit Drug Market
As increasing numbers of women seek treatment for infertility, the combination of sky-high costs and skimpy insurance coverage has created a thriving underground market in patient-to-patient drug sales.
According to knowledgeable participants, thousands of individual women and couples are obtaining fertility drugs at discount prices from other patients who bought more of the medications than they needed.
Buyers and sellers typically meet on the Internet, either directly or with the assistance of informal fertility drug brokers who provide their services at no cost. They sometimes meet in doctors’ offices and infertility clinics, some of which allow patients to post notices of drugs for sale.
Drug sales between patients are illegal, federal and state authorities say, and carry penalties in some states that include jail time. But so far authorities have not monitored them aggressively, leaving women relatively free to buy and sell leftover fertility drugs without fear of prosecution.
For many women, the incentives are huge. The cost of the most effective treatment--in vitro fertilization--is roughly $10,000, and often several rounds of treatment are needed before a woman gets pregnant. The drugs used in the process add anywhere from $1,500 to $4,000 to the cost of each round. And only about 15% of insurance plans cover in vitro fertilization, forcing most patients to pay the entire bill themselves.
The high cost can be a formidable hurdle for many women and their partners. But fertility decreases with age and, if they delay, they may lose the chance to have a child.
Ann, a 39-year-old New Yorker who asked that her full name not be used, has been trying to get pregnant for more than three years. But time and money are running out. Now that her limited insurance coverage has been exhausted, the combined cost of in vitro fertilization and fertility drugs is beyond her means, she said. So, a few weeks ago, as she prepared to start her first IVF treatment, she logged on to the Internet in search of discounted drugs.
Powerful search engines make it easy to find Internet sites that post notices of drugs for sale. Many of the sites primarily serve as support groups for women going through the often traumatic cycle of infertility treatments.
FDA Is Aware of Illicit Trade
Tom McGinnis, director of pharmacy affairs at the Food and Drug Administration, said that the agency is aware of the underground market and is attempting to monitor the trade in leftover fertility drugs. “We are concerned about it,” he said.
Buyers who get the drugs from unconventional sources lack the usual guarantees that the drugs will be pure and have been handled and stored correctly, McGinnis said. But he acknowledged that the FDA has received no reports of anyone becoming sick from drugs bought over the Internet.
Almost all of the drugs must be injected. Typically, doctors tell their patients how many ampuls they will need.
Some doctors say that there are health risks for women using drugs bought outside the United States. Dr. Richard Marrs, a Los Angeles-area fertility specialist, said that a small but significant number of his patients had bought drugs from Mexico. About a third of them purchased substandard products that did not work properly.
“It wasn’t a small problem because there are lots of patients going to Tijuana,” he said. Two years ago, he said, he began actively discouraging patients from buying drugs outside the United States.
In vitro fertilization involves stimulating a woman with hormones to produce as many eggs as possible, then removing the eggs and fertilizing them with the husband’s sperm to obtain a viable embryo that is placed in the woman’s womb. Like most participants in the underground market, Ann had received a prescription from her doctor for the hormone-based drugs needed to boost her egg production.
“It’s a sin, what we’ve been going through,” she said. “The expense, everything about it, is horrible. Why shouldn’t it be covered? [Insurance companies] cover Viagra.”
Resentment Grows Among Patients
Among infertility patients, in fact, the lack of insurance coverage is causing growing resentment. Many patients believe that insurers avoid covering their fertility problems in part because the public views assisted pregnancy as an elective procedure, closer to cosmetic surgery than to chemotherapy.
“What’s happened is that people are just disgusted,” said Melissa, a Pennsylvania woman who said that she has matched 250 fertility drug buyers and sellers via e-mail over the last couple of years, and who asked that her last name not be printed. “If you have heart disease, they won’t tell you you can’t have bypass surgery. But for women with no Fallopian tubes, they say something else.”
“No middle-class person can afford this,” said Mark Hansen, an emergency room nurse in Omaha. “We couldn’t afford it. We had to take out personal loans.” Hansen and his wife bought fertility drugs, then recouped some of the cost of their own treatment by selling some of the drugs they did not use to other patients.
An estimated 6.5 million couples, or about 10% of the reproductive-age population, are affected by infertility, which is defined as the inability to get pregnant after one year of unprotected intercourse. For centuries, the condition went untreated.
Over the last two decades, however, there have been dramatic advances in medical understanding of the condition and the technology for treating it. There has been a corresponding explosion in public awareness and interest in obtaining treatment.
In 1997, the last year for which figures are available, women underwent about 60,000 cycles of in vitro fertilization in this country, according to government statistics. The number is rising at a rate of about 10% annually and is likely to be close to 100,000 in 2000, said Sean Tipton, chief of government affairs for the American Society for Reproductive Medicine.
All 50 states have laws requiring that prescription drugs be sold only by licensed pharmacists. In California, depending on the circumstances, most violations would be misdemeanor offenses carrying penalties of as much as six months in jail and fines of as much as $2,500, said Patricia Harris, executive officer of the California Board of Pharmacy.
Bringing drugs into the country from foreign countries technically is illegal. But the U.S. Customs Service said that it allows Americans to bring in medications as long as they have a prescription and are transporting limited quantities, typically no more than a three-month supply, for personal use. Buying drugs from overseas sources by mail is also illegal and federal authorities said that they are attempting to stop the practice. But many mail-order prescriptions get through because there is insufficient manpower to inspect all incoming mail, FDA officials said.
“These drugs should only be coming from a state-licensed pharmacy, not from one patient to another patient,” said the FDA’s McGinnis.
Justice Department officials said they are aware of no criminal cases involving sales of fertility drugs on the Internet. Internet drug cases usually involve prosecutions of sellers, not buyers.
“Online drug sales are relatively new,” said Deputy Associate Atty. Gen. Ethan Posner. “There are investigative challenges posed by it. . . . But the department has brought more than a dozen cases involving online drug sales and will continue to vigilantly enforce the law.”
The forces that lead women to break the law are complex. They include lack of insurance for infertility treatments and the necessary medications, the fact that at the end of treatment women often have leftover drugs, and a long history in this country of women being willing to disobey the law to obtain the reproductive health services they want.
Earlier in this century, before family planning was legal, women often helped other women obtain birth control. Similarly, they helped each other obtain abortions before the Supreme Court’s 1973 Roe vs. Wade decision, which established abortion as a constitutionally protected right.
“Women have historically been willing to break the law around reproductive health issues,” said Prof. Carol Weisman, a sociologist specializing in women’s health at the School of Public Health at the University of Michigan. “This is an area that is extremely important to them and typically they have broken the law to expand access to these services.”
The trade in fertility drugs differs from most illicit drug trafficking because the profit motive is missing and because buyers and sellers typically talk to each other extensively and sometimes even meet before exchanging money. Many women say the discussions help reassure them that they will get the drugs they need and will not be bilked.
Kathryn, a 41-year-old Los Angeles woman, saw a notice posted in her doctor’s office by another woman who had drugs for sale. At first, she and her husband felt like they were “going on an illicit drug deal.” But when they met the seller, they learned that she hadtraveled the same difficult road in attempting to have a child.
“We clicked instantly,” said Kathryn, who also requested that her last name not be printed. “It was so good to talk to someone about all the frustrations of trying to get pregnant. . . . It’s so devastating, you feel so empty when it fails. . . . There’s so much hope involved and there’s . . . the exorbitant costs.” The market for the class of drugs used to stimulate the ovaries to produce eggs has been growing at 15% annually, according to Barri Falk, a vice president for Serono, a Swiss-based pharmaceutical company that makes one of the leading fertility drugs.
But insurance coverage remains limited. Only about 15% of plans cover the most sophisticated treatment, according to a survey taken this year by William Mercer, a national employee benefits consulting firm.
“Our insurance didn’t cover anything,” said Ellen Dunne, a 30-year-old Texas woman who underwent five years of unsuccessful fertility treatment, including two cycles of in vitro fertilization. “It was terribly expensive for us, and when I called to pharmacies here the drugs were going to cost $60 an ampul and I needed four ampuls a day.”
Dunne searched on the Internet and found pharmacies in London and Paris where she was able to buy the drugs for one-third to half the price charged in the United States.
“You have to pay shipping but you save hundreds of dollars for just one cycle,” she said. After her treatment failed, she and her husband adopted a little girl.
The demand for infertility treatment and the risks some women are taking to obtain it have spurred a movement to mandate insurance coverage. While 13 states require insurers to make some form of coverage available, only Massachusetts and Illinois require comprehensive coverage.
One measure pending in Congress would require coverage by the federal government’s employee health plan. Another would require all insurers to offer coverage for infertility treatments deemed “nonexperimental.”
Insurers generally oppose mandates, insisting that they would increase premiums and cause some people to drop coverage altogether. “We believe that employers and unions should be able to construct benefit packages to meet the needs of people that they’re providing coverage for,” said Susan Pisano, a spokeswoman for the American Assn. of Health Plans, which represents about 1,000 plans nationwide.
But there is disagreement over whether mandated coverage would make a significant difference in the cost of insurance. According to the office of Sen. Robert Torricelli (D-N.J.), who is sponsoring one of the mandate bills, studies have shown that infertility coverage would raise costs to health care subscribers by $2.49 to $20.52 a year, depending on the type of coverage and where they live. Blue Cross in Massachusetts said that comprehensive coverage of infertility adds $13.20 per year to each of its enrollees’ premium costs. The largest part of the cost is the drug component.
Until more people have such coverage, interest in the underground market is certain to grow, participants predicted.
Melissa, the Pennsylvania woman who links buyers with sellers, said that she understands from her own experience why women are willing to take the risks associated with Internet drug sales: With the help of IVF treatments, she was able to have a second child and is pregnant with a third.
“I’ve never in my life talked to people who are willing to go to such extremes to get something,” she said of the women who seek her assistance.
“They say: ‘This is my last-ditch hope.’ There’s nothing more important to them and nothing they wouldn’t do.”
