In 1992, Congress passed a law to help protect in vitro fertilization patients after a series of scandals. It created a new metric – known as success rates – aimed at helping patients make more informed decisions.

Our reporting found that the law isn’t having its intended effect – and is driving bad practices.

Given the shortcomings of consumer protections, here are three ideas that could help fix the problems we found:

  1. Improve the way the CDC handles fertility data

Federal law requires the Centers for Disease Control and Prevention to gather a range of data on every IVF cycle, including information that is useful for understanding clinic practices. This includes cycles that resulted in very premature births, and the number of times that a patient experienced an infection or a potentially serious complication known as severe ovarian hyperstimulation syndrome.

However, the CDC currently withholds this type of detailed data from the public.

The CDC told Reveal from The Center for Investigative Reporting that it could not release this information due to an “assurance of confidentiality” agreement aimed at increasing clinic participation, and to protect both patients and clinics from “embarrassment or harm.”

The CDC could, however, explore ways of increasing access to aggregated and clinic-level data without jeopardizing patient privacy. This could allow the public to look at a specific clinic to see if it is regularly linked to complications or problems. Right now, CDC’s public data makes it difficult to distinguish between clinics that, for example, might take on only the most difficult cases and those that game the numbers.

  1. Expand insurance coverage for fertility treatments

Though infertility is considered a disease by the World Health Organization, it is not universally covered by insurance in the United States. Fifteen states require health plans to provide fertility coverage, and only eight of those mandate that insurers pay for IVF treatments.

This has generated a host of financial problems for the patients who must pay out of pocket for the pricey procedure. Some rack up credit card debt. Others dip into their retirement funds. Some rely on high-interest medical loans.

The lack of insurance also has played a role in pushing patients and clinics to take the riskier route of using more embryos than necessary. Patients believe it increases the chances of success while cutting down on costs.

Expanding insurance coverage could help contain costs and take financial worries out of what is already an emotional process. It could promote best practices by only reimbursing IVF doctors who transfer one embryo at a time unless there is a valid medical reason.

We have already seen this concept put into practice with results. In various European countries, this strategy has significantly increased the use of one embryo at a time and reduced the rate of twins and triplets. In the U.S., Massachusetts requires IVF coverage and some insurers mandate the use of single-embryo transfers in specific circumstances.

Aside from making IVF more affordable and promoting best practices, wider insurance coverage of the treatment would create a measure of external quality control. Because insurers would only reimburse doctors for effective and evidence-based care, doctors would be disincentivized from steering patients toward unnecessary or unproven treatments.

State or federal governments could mandate that insurers cover fertility care. Workers could also ask their employers to offer health plans that provide comprehensive coverage of fertility treatments.

  1. Follow the United Kingdom’s lead and establish a fertility agency

The United Kingdom, the birthplace of IVF, regulates fertility care through the Human Fertilisation and Embryology Authority.

An agency that works in collaboration with the Department of Health, the organization keeps close track of fertility clinics by issuing licenses and regularly inspecting clinics. Each clinic’s inspection reports are then posted online.

The agency also publishes IVF success rates in a way that provides greater context than the U.S. currently does. It provides a clear explanation about the different calculations for success rates that it publishes for each clinic, and how to interpret them. And instead of emphasizing annual numbers that are easy to misunderstand or manipulate, the authority instead emphasizes whether or not a clinic is performing to the national average.

It also establishes public health policy. It has created a long-term target of significantly decreasing the multiple birth rate from IVF, and it requires each clinic to develop an annual plan to meet this goal. It wants to drop the rate of multiple births from IVF clinics from 17 percent to 10 percent. The U.S. rate from IVF is about 40 percent.

Finally, the authority collects data and publishes success rates for the most common fertility treatments, such as intrauterine insemination, intracytoplasmic sperm injection and artificial insemination. This can help patients understand the various treatment options available, and their chances of success.

The U.S. could consider adopting similar strategies. Though the fertility field has expressed concerns about additional regulation and enforcement, American policymakers could require the inspection and licensing of fertility clinics.

On the success rates front, the CDC could make them easier to understand by publishing the rates in a way that’s similar to the Human Fertilisation and Embryology Authority. It could also expand the type of data it gathers to include other types of popular non-IVF treatments, which would give patients more information about less-expensive and less-invasive options.

Bernice Yeung is a reporter for Reveal, covering race and gender. Her work examines issues related to violence against women, labor and employment, immigration, and environmental health. Yeung was part of the national Emmy-nominated Rape in the Fields reporting team, which investigated the sexual assault of immigrant farmworkers. The project won an Alfred I. duPont-Columbia University Award and a Robert F. Kennedy Journalism Award and was a finalist for the Goldsmith Prize for Investigative Reporting. Yeung also was the lead reporter for the national Emmy-nominated Rape on the Night Shift team, which examined sexual violence against female janitors. That work won an Investigative Reporters and Editors Award, the Society of Professional Journalists Sigma Delta Chi Award for investigative journalism, and the Third Coast/Richard H. Driehaus Foundation Competition. Those projects led to ​​her first book in 2018, “In a Day's Work: The Fight to End Sexual Violence Against America's Most Vulnerable Workers.”  

A former staff writer for SF Weekly and editor at California Lawyer magazine, Yeung has had her work appear in a variety of media outlets, including The New York Times, The Seattle Times, The Guardian and PBS FRONTLINE. She has a bachelor's degree in journalism from Northwestern University and a master's degree from Fordham University, where she studied sociology with a focus on crime and justice. She was a 2015-16 Knight-Wallace fellow at the University of Michigan, where she explored ways journalists can use social science survey methods in their reporting. Yeung is based in Reveal's Emeryville, California, office.

Jonathan Jones is a reporter and producer for Reveal. In his two decades in journalism, he has produced a series of award-winning investigations on topics ranging from eminent domain to problems in the fertility industry. He has covered conflict and human rights in 10 countries, including Congo, Liberia, Rwanda, Cambodia and Sri Lanka. In 2013, he teamed up with A.C. Thompson of ProPublica and PBS Frontline on a yearlong investigation into abuse and neglect at the largest assisted living company in the United States. In 2015, his exposé of Firestone's operations during the Liberian Civil War for ProPublica and PBS Frontline was awarded two News & Documentary Emmy Awards for outstanding investigative journalism and outstanding research, as well as the top Investigative Reporters and Editors Award in the large multiplatform category. In 2018, Jones, along with colleagues at WNYC's Snap Judgment, won the Best Documentary Gold Award at the Third Coast International Audio Festival for "Counted: An Oakland Story," which profiled those lost to violence in Oakland, California, in 2017 and the impact on their communities.