We Must Protect IVF—And Protect the Patients, Too | Opinion

News of the Alabama Supreme Court ruling in February that embryos have personhood status rocked the world. Current, former, and potential in vitro fertilization (IVF) patients as well as providers are justifiably alarmed. One would think all would work together to protect IVF with a counterbalance that serves patients and providers alike. However, that has not proven to be the case with proposed legislation that focuses on provider protection while eliminating protections for patients.

As former IVF patients who pursued multiple rounds of fertility procedures, we know what it's like to be hopeful, vulnerable, and concerned that procedures you have completely invested yourself in may not be able to continue. IVF is financially demanding as well as physically and emotionally grueling. Regardless of whether a successful pregnancy and delivery occurs (the minority outcome), IVF changes you forever. One of us successfully delivered a child due to IVF; the other did not. However, we are united in our concern for those pursuing fertility procedures, which is why we want to make sure patients are protected in this post-Dobbs era.

Patients have historically never had great protections or robust informed consent when working with clinics that sell reproductive procedures. That's why, as former fertility clinic clients in California and Florida, we do not want to see well-meaning legislators inadvertently set the table for greater abuse or wrongdoing.

Some of the bills introduced to protect IVF in the U.S. Congress, Alabama and others taking shape are far too broad and not in the best interest of patients. Specifically, the first successful Alabama bills, SB159 and HB237, provide civil and criminal immunity for damage or death of an embryo to anyone providing or receiving services related to IVF with no mention of patients. Signed into law March 6, this headline says it all: Alabama Bill to Protect I.V.F. Will Reopen Clinics but Curb Patient Rights

There are times during IVF where embryos are damaged or destroyed and someone must be held accountable. Notably, the case which led to the Alabama Supreme Court ruling was due to frozen embryos that were removed from tanks and dropped, thereby destroying them. In an area of medicine with almost no regulation or oversight, providing full civil and criminal immunity related to IVF goes too far in favoring service providers. We want IVF access to be protected, but bills such as these eliminate the only consequence available to patients to ensure their embryos are properly handled.

So, why isn't the larger community coming together to make sure patients and providers are both protected in the effort to safely provide IVF? Following the Alabama Supreme Court ruling, the American Society for Reproductive Medicine (ASRM) stated it would not rest until the ability to provide patients with the best care is restored. Yet, In response to Alabama's immunity bill introduced to get clinics back open, the largest professional association for reproductive service providers, made no secret that its focus is on its members. ASRM stated that the immunity bill did not provide enough assurance against legal risk.

ASRM went on to note that Alabama's legislative response has consequences for all Americans and that the nation and world are watching. This is correct. We are watching, and this includes current and potential fertility patients (as well as former patients too traumatized by their IVF experiences to step forward). Many have watched with growing concern how commercial forces continue to obfuscate and compromise patient care in a quest to grow bottom lines.

It is concerning that in working to restore care for patients in Alabama, ASRM took the position that a bill providing civil and criminal immunity for any damage or destroying of embryos does not provide enough legal risk assurances for providers.

And who is standing up for patients? You might think RESOLVE, an organization started in 1974 as a grassroots infertility patient advocacy group, would call for stronger patient-consumer protection, but RESOLVE is conflicted.

In April 2019, RESOLVE and ASRM entered into a three-year agreement. As part of their collaboration, ASRM provided funding to RESOLVE for its Access to Care programs. RESOLVE's largest corporate donors today are Big Pharma (such as Ferring Pharmaceuticals and EMD Serono, which sell expensive egg freezing and IVF medications), and mega clinics like US Fertility and CCRM. Another donor, CooperSurgical, which bills itself as a "global leader in IVF and reproductive genetics," is currently embroiled in lawsuits for providing defective embryo culture that caused embryo loss.

While asking patients to tell their stories, come together, and demand that legislators fight for families, RESOLVE is also pushing for support of the immunity bill which provides no patient protections.

In supporting the immunity bill, RESOLVE noted an issue with an amendment. We believed they would request that embryos damaged due to intentional acts be put back into the bill to support patients' embryos harmed in this way, but RESOLVE was instead concerned that the word "goods" had been removed thereby removing support for suppliers. Supporters of the bill have been successful in getting the word "goods" added back in and now RESOLVE is requesting that advocates contact lawmakers to vote for the amended bill with its protections for patients, providers, and suppliers with no explanation as to how the bill protects patients.

Look no further than the language RESOLVE used in its latest email fundraiser: "we must capitalize on this moment."

We've each witnessed clinics behaving badly and heard many instances where IVF providers prioritize business over patient care with a focus on new client capture and the selling of add-ons. For this reason, we're not alone in our worry about the future and motivated to make sure treatments are protected. We believe there's an opportunity to ensure that patients and providers are equally protected. We'd also like to see a priority shift to patient-centered care and greater industry transparency.

In short, legislation can do two things at once: protect IVF access and strengthen patient safeguards. We cannot allow only corporate interests to control what comes next. Now more than ever, patients need a seat at the table.

Pamela Mahoney Tsigdinos is a freelance writer and author of Silent Sorority; Allison Freeman is a practicing attorney. Both became patient advocates following IVF.

Disclosure: Ms. Freeman works with clients pursuing HIPAA violations issues related to genetic testing.

The views expressed in this article are the writers' own.