As I passed through my early and mid-20s, I hit many milestones. I could legally drink, go to queer clubs, and rent a car, but I had aged out of my parents’ medical insurance. I wasn’t initially concerned about getting my own medical insurance, but I quickly learned that making a doctor’s appointment wouldn’t be as easy as before. At one point, I went to the doctor’s office twice, only to be told that I couldn’t see the doctor because of an insurance issue. That’s when I began to dig.

After researching and making calls to my doctor’s office, I discovered I had fallen victim to a common problem: the doctor I was trying to see was part of a ghost network, an inaccurate insurance listing by a provider that often forces patients to pay out of pocket. In March, U.S. senators introduced the Behavioral Health Network and Directory Improvement Act, a bill that would independently audit provider plans.

Several states, including Illinois, Oklahoma, and New York, have passed legislation that would force providers to bring their ghost networks back to life, are currently working on legislation, or had their government address the issue in some other way, such as a report from the attorney general. The push for legislation around ghost networks has been a welcome effort for LGBTQIA+ people, who are disproportionately affected by the problem due to higher prevalence of mental illness, unique health needs such as gender-affirming surgery, and difficulty finding a doctor who is accepting of their sexual and/or gender identity.

“It takes a lot to reach out for therapy,” said Krista Gaston, a therapist who works exclusively with LGBTQIA+ clients. Gaston said she’s taken it upon herself to figure out the intricacies of insurance and update her Psychology Today profile as often as possible. “Often people are in a really hard moment when they finally hit the urge to reach out for a therapist or do the search, like often people are in crisis, in that moment. And so, just to think about them reaching out in that moment and not being able to receive help … maybe they just won’t reach out anymore.”

Ray Moon, a genderqueer San Francisco Bay Area resident, told Prism their gender identity has made navigating ghost networks significantly more challenging. In August 2023, Moon underwent aortic dissection and suffered a stroke during the procedure. They were then fired from their job, leaving them in insurance limbo. However, they had difficulties scheduling a meeting with a primary care physician, a necessary first step to scheduling a visit with a cardiologist to discuss their recovery journey after surgery. Alongside navigating an already complex system, Moon dealt with the effects of aphasia and memory loss brought on by the stroke and postoperative medication.

Moon said they decided not to tell their doctors about their gender identity, but that this decision caused problems when attempting to schedule appointments. Navigating the inaccuracies of ghost networks requires patients to make many calls to determine if the doctor they want to see is available, taking the patient’s insurance, and if the doctor is still practicing the specialty listed on the website. Being genderqueer added an extra layer of difficulty for Moon, who said providers would ignore their chosen name and solely use their legal name.

“It got to a point where if I wasn’t crying when I was on the phone call with them, they would not take me seriously,” Moon said. “It felt like I was begging for dignity that was never going to come.”

Eventually, Moon found their way to a local legal service that helped them understand their rights.

“I cannot stress how little I understood about insurance before everything that happened to me this past year, and the amount that I have learned still doesn’t do myself or other people that much good,” Moon said.

Ghost network legislation

In 2023, the California Assembly passed a bill requiring a plan or insurer to audit and delete inaccurate listings from its provider directories annually. It would require a provider directory to move towards 95% accuracy by the first day of 2027, with benchmarks along the way.

The momentum to eliminate ghost networks goes back several years, and many lawsuits have been filed. A 2021 lawsuit filed by San Diego City Attorney Mara Elliott accused Kaiser Permanente of having a mental health care directory inaccuracy rate of over 30 percent.

When it comes to LGBTQIA+ people’s mental health treatment, keeping listings up to date is especially important. According to research from KFF, 67% of LGBTQIA+ people reported needing a mental health service over the past two years, compared to 39% of non-LGBTQIA+ people. A higher share of LGBTQIA+ people reported taking at least one prescription medication regularly.

LGBTQIA+ people across the nation report struggling to find in-network affirming care. Data from the Center for American Progress shows a dismal picture: Around 1 in 4 transgender people report avoiding seeking care out of fear of discrimination. Additionally, 9% of LGBTQIA+ people said a doctor or other health care provider used harsh or abusive language when treating them.

But filing a grievance with your insurance, like many overly bureaucratic things, is not as helpful as it seems. California law already requires that a patient must be able to see a primary care physician within 10 business days and a specialty care physician within 15 business days of making a request. If their insurance cannot accommodate this time frame, they must help the patient get an appointment with another provider, in or out of network. While insurance grievance policies are intended to provide patients with a formal process to address issues, some insurance companies exploit these rules to prolong the resolution of the claims. Anthem, for example, has a policy that states that grievances will receive a written response within 30 calendar days. However, navigating these systems can be an arduous and time-consuming task, one that many vulnerable patients simply don’t have the resources to undertake.

California is currently facing a shortage of primary care providers, and since 8% of LGBTQIA+ people report that a doctor or other health care provider refused to see them because of their actual or perceived sexual orientation, advocates fear that no guides or directories can fully bridge the gap of inaccuracies. 

Organizations like the National Union of Healthcare Workers are pushing for legislation and have had members testify in front of the California State Legislature. As medical professionals, they’ve seen firsthand the effects ghost networks can have on the lives of patients and potential patients. Unions are also busy advocating for the rights of their own members through actions like strikes.

“You see all of these people who can be helped, who need help, who deserve and are entitled to help and are not getting it,” said Sarah Soroken, a National Union of Healthcare Workers member. “It really is a social justice issue, it’s an issue of our system not prioritizing the most vulnerable among us and people in need. It more prioritizes or caters to industry and profits. It’s just so opposite of what I thought I was getting into when I studied to become a therapist.”