What do you want colleagues to know about getting involved in advocacy about policy issues?

One of our representatives in New Jersey had a constituent who is a lesbian and had IVF benefits. Even though New Jersey has a mandate for IVF coverage, the insurance company made her pay out of pocket for 12 IUI cycles and buy donor sperm before she could access any benefits. Donor sperm is now up to about $2,000 a vial because there’s a shortage, and frozen sperm doesn’t work well with IUI. For lesbian couples paying out of pocket, maybe one or two IUI cycles might work, but paying $2,000 per vial when the take-home baby rate from IUI with frozen sperm is very low—often under 10–15%—doesn’t make economic or medical sense. Frozen sperm in IVF cycles, however, works the same as fresh sperm if all parameters are good, so IVF makes much more sense in those cases. Essentially, the insurance companies were discriminating against these people because of their sexual orientation, and we had to change the law to fix it.

We already had a law, but insurers found a loophole. This past year we amended the statute to explicitly say that physicians should be able to make medical recommendations and decide what is appropriate for the patient. Insurers were using the old law to force a rigid protocol. We had to make clear that it is unethical and unlawful to discriminate and withhold treatment from people because they don’t have a partner or because of their sexual orientation or gender identity.

As of August, everyone in the state who falls under this mandate will finally have coverage. The change took effect for policies that renew on or after August 1st. If your policy renewed in July, you have to wait until your next renewal. We’ll see what loopholes insurers try to find—there are always loopholes—but we hope we anticipated them. This work matters.

Many of New Jersey’s mandates started with constituents. One of the first mandates changed a system that used to explicitly reference “husband and wife” in the law. That language, written in 2001, showed tremendous bias. After lesbian and gay couples were repeatedly denied coverage, two couples—four people, all New Jersey teachers—sued the state around 2015–2016. One of those couples were my patients. They told me I didn’t take no for an answer: I fought the insurance company, and while we didn’t get everything we needed, we made a difference. That gave them the strength to raise their voices and sue for bias and discrimination. The legislators reacted, recognized this was unacceptable, and changed the law. What started with a few people changed the lives of thousands in New Jersey.

It’s important to get that message out, especially now with so much extremist dialogue. People listening to all that noise feel hopeless and voiceless. Changing things at the federal level is difficult and will take a long time, but at the local and state level we are pushing back, passing legislation, and making a difference. In the last ten years, the number of state mandates covering infertility and fertility preservation for cancer patients has more than doubled. That progress is driven by patients and organizations like RESOLVE and Fertility Within Reach telling their stories.

Groups like RESOLVE, ASRM, and Fertility Within Reach have organized platforms that make it easy to participate. Once a year you can sign up by email, answer a few questions, and join a Zoom training about telling your story to your senator, representative, or a healthcare staffer on Capitol Hill. That training really makes a difference. Some people are cavalier—“I live in a blue state, everything’s fine”—but what happens on the federal level, like attempts to pull back FDA approval of mifepristone and misoprostol, can affect everyone. Those drugs are used daily in ways unrelated to abortion, such as helping women deliver or stopping life-threatening bleeding. Things that start in red states can affect all of us, so blue-state residents who won’t be prosecuted for speaking up have an obligation to do so.

Doctors are often bad at speaking up because we’re trained to be apolitical and neutral. I don’t mean we should be partisan; I mean we should be involved in the policy process, raising awareness and educating politicians who make healthcare laws but often don’t understand healthcare. As physicians, we are obligated to help them understand the implications of these laws. We don’t have to become politicians; we just need to use our training, knowledge, and experience to protect our patients and the healthcare system. We have an extremely powerful voice. Some of the mess we’re in after Dobbs and the overturning of Roe v. Wade is partly because physicians weren’t present when those laws were being made.

It’s not hard to get involved. The hardest part was becoming a doctor—after that, physicians are already skilled advocates. They just need to connect with organizations that can prepare the work for them. When I testify before the New Jersey legislature about access to care, these organizations usually dress me in a white coat and handle everything else: they draft the bills, ask if the wording is medically correct, do the lobbying, meet with staffers, and set up the times. They tee it up so all I have to do is be myself and tell the truth, which is almost always appreciated.

I know colleagues in some red states face adversarial conversations and more danger, so it’s harder for them. My friend Stephanie Gustin, an REI in Nebraska—one of only five REIs in the state—faced a governor who wanted to shut down IVF in August 2022 with an extreme personhood bill. She considered leaving but chose to fight. She and doctors from competing practices joined forces, started a Facebook page, collected patient stories by voting district, and took those stories to representatives. Even conservative representatives didn’t want to harm their constituents’ families. The outcry was so strong that a special session was shut down. They prevented that immediate threat and then fought against a proposed six-week ban; although Nebraska now has a 12-week ban that was passed improperly by pairing it with another bill, their advocacy made a huge difference. The ACLU is pursuing legal action because two subjects were combined in one bill, which violated due process.

Similar efforts have mitigated personhood bills in Louisiana. In Alabama, despite embryos being legally considered minor children, IVF is still being done. In Texas, the situation remains dire; pregnant women continue to be harmed. These are the battlegrounds. Action is local and at the state level, and people have powerful voices there.

We have data showing that a strong majority of Americans, across political affiliations, support access to IVF. The loud voices against IVF are an extremist minority, not the public at large. Unfortunately, the majority is often silent, and doctors are a big part of that silence. If we want to make change, we need to stop being silent.

So I think, as far as getting involved in advocacy and policy issues, there are two main things in the infertility world right now. First is fertility coverage. Several attempts to create a national fertility coverage mandate have failed, so it seems this needs to happen at the state level. A handful of states require coverage of fertility treatments. Infertility is defined as a disease by the WHO and the CDC, so it should be covered like other conditions. Efforts in many states have still failed, but some states have at least succeeded in getting fertility preservation covered for cancer patients or others facing medical diagnoses or treatments that could eliminate fertility. Often it's easier to expand that to full fertility coverage later. As much as I'd love to work at the national level, we're seeing more success state by state.

The second policy issue is how anti-abortion laws affect fertility care. When life is defined as beginning at conception, that definition includes embryos created for IVF, which creates ethical and practical problems: what do we do about freezing embryos? Is it ethical to freeze and thaw a life? What about embryos found to be genetically abnormal—often not compatible with life—so they wouldn't result in a pregnancy or might cause a miscarriage? Do we force people to transfer those embryos and face the heartbreak of a possible miscarriage, or do we force them to pay for a transfer because we cannot discard a life? Regardless of one's political, religious, or ethical stance on abortion, people need to realize that defining when life begins affects not only abortion laws but also fertility laws.

Historically, the medical and scientific communities have considered themselves above advocacy, policy, and politics. As a result, they have often excluded themselves from those conversations, believing they occupy a morally and ethically superior space defined by scientific reason and precision. That reluctance has left them without a voice in many advocacy, policy, and political discussions where others have long integrated health topics. This absence has been harmful to health policy, to our patients, and to the political and legal aspects of health.

I want my colleagues to recognize that we need to move beyond the idea that we should avoid advocacy, policy, and politics. Engaging in these areas is an important part of our profession. We have credentials, knowledge, and expertise that are vital to these conversations. I encourage my colleagues to consider how they can become more involved—put more skin in the game—especially in advocacy and policy work related to health care institutions and patients.