Could Health Care Reform Prevent Another Octomom?

The various health care bills in front of Congress don’t specify which procedures insurance plans must provide upon passage of the legislation. That will probably be up to the Department of Health and Human Services, after President Obama signs the final bill into law. But what’s certain is that for the first time, insurers will be regulated. The result will be a basic package of care all insurers must provide.

Advocates on both sides are up in arms over whether abortion will be covered [2] in that basic plan. But assisted reproduction, a field that has grown exponentially over the past decade, has so far been ignored. That’s shortsighted. Infertility treatments and prenatal genetic testing are becoming some of the most expensive and ethically controversial parts of our health care system. As the Octomom debacle [3] demonstrated, the field is crying out for regulation. Done right, President Obama’s universal-health-care push could accomplish that. But first, policymakers will have to mediate some uncomfortable debates between advocates for reproductive rights and disability rights.

As couples are increasingly able to overcome infertility, and then learn about the DNA of their fetuses, two major concerns are emerging that affect the health reform debate. First, patients who can’t afford to pay out of pocket don’t have the same access to infertility treatments and prenatal genetic testing as patients who can. In addition, there is evidence that regardless of whether patients have insurance or can pay, they aren’t receiving accurate information about the failure rates of prenatal genetic tests or about what life is like for people who have genetic diseases. That could be contributing both to more abortions and to a greater stigma associated with raising a disabled child.

The menu for assisted reproduction and prenatal testing grows longer each year. For about $1,000, doctors can now screen prenatally not only for Down syndrome but also for cystic fibrosis, Huntington’s Disease, hemophilia, and sickle cell anemia. Expensive new technology is coming down the pike that will offer parents the option of getting a definitive prenatal Down syndrome diagnosis as early as the first trimester, through a blood test that isolates fetal DNA from maternal DNA. And in the near future, it may be possible to identify, in utero, a gene for autism.

With preimplantation genetic diagnosis, or PGD—which costs up to $5,000 and is rarely covered by insurance—even an embryo conceived in a Petri dish via IVF (up to $15,000 out of pocket) can be tested for genetic abnormalities. Selected embryos can be implanted in the uterus, often two, three, or even more at a time.

Who should get each of these services and tests, and how much should patients pay? Which procedures should Obama’s health care plan require insurance plans to cover—state-of-the-art testing and treatment, or a more basic and modest package? And what about the expense posed by pregnancies with multiple fetuses, because of the high health risks for both moms and babies—who bears it?

It’s no wonder that American couples battling infertility often opt for the combination of PGD and multiple implantation, which they believe will increase their chances of giving birth to a healthy baby without the travails of additional rounds of IVF. But luxury fertility treatments open up a tricky debate about the rationing of care. Remember President Obama’s vow to “bend the cost curve” by tamping down on unnecessary medical procedures? Many experts see PGD and multiple implantations as prime culprits for unaffordable spending. Exhibit A through G, of course, is Octomom Nadya Suleman, whose doctor ignored professional guidelines by implanting six embryos, two of which split into twins, in her uterus. Also to blame is the trend of for-profit clinics advertising elective PGD to couples who want to choose their baby’s sex or even eye and hair color. “Clinics are in this totally out-of-pocket, for-profit environment,” says Susannah Baruch, a Washington-based lawyer and policy consultant specializing in reproductive genetics.

Baruch hopes broader health insurance coverage could lead to stronger government regulation of the fertility industry. There’s evidence this works. Britain’s National Health Service pays for every infertile woman to undergo three IVF cycles. And, sure enough, in the United Kingdom, single embryo transfers are the norm, and PGD is generally used only when the parents’ medical history suggests an increased risk for fetal genetic abnormalities.

In the United States, however, we have a classic divide between haves and have-nots. For the poor, even basic prenatal genetic testing can be out of reach. Medicaid pays for 40 percent of American pregnancies—1.6 million annually. But while 46 states and the District of Columbia provide some Medicaid coverage for prenatal genetic testing, the reimbursement rates are low, and parents often can’t afford to pay the rest of the bill.

In a universal health care system, though, insurers would be under more pressure to evaluate each new reproductive technology as it comes online and make a call about its safety and cost-effectiveness. And if Obama’s healthcare package defines some genetic counseling and testing as “basic care,” poor women would have the same options as wealthy ones when it comes to choosing whether or not to carry a fetus with Down syndrome or cystic fibrosis to term.

But politically speaking, the president’s supporters on health reform simply don’t agree about whether greater access to prenatal testing is a good thing. Disability rights advocates lament that 85 to 90 percent of women who receive a prenatal Down syndrome diagnosis choose to terminate their pregnancies. And yet if poor women can’t access prenatal testing because of high costs, genetic disorders and certain chronic diseases could become associated with poverty.

Indeed, research shows that when giving expectant parents a diagnosis of Down syndrome, doctors often assume that abortion is the logical choice and provide little information about living with Down syndrome. The Obama administration has already provided $800,000 in grants for efforts to give expectant parents more accurate information about prenatal testing and raising disabled children, but advocates hope for much more funding, especially if genetic testing becomes more widespread as a result of health reform. They want the government to use its money to encourage doctors, genetic counselors, and nurses to put a more positive spin on raising kids with Down syndrome and other disabilities that many people consider catastrophic. David Tolleson, executive director of the National Down Syndrome Congress, even cites the fact that parents of children with Down syndrome have a lower divorce rate.

The best way for government to reign in the excesses of assisted reproduction is to guarantee every patient access to medically sound and cost-effective services such as genetic counseling, single-implantation IVF, and basic prenatal genetic testing. And the government should also tightly regulate more controversial procedures. It’s likely that openly discussing these issues would provoke a death panel-like storm. But an open discussion is exactly what’s needed. When it comes to healthcare reform, the beginning of life has the potential to be just as tricky as its end.