People who adopt a transgender identity are often encouraged by healthcare providers to undergo procedures that change the way their bodies look. Even though multiple systematic reviews have come out showing there was never any evidence these procedures had any benefit at all, providers still make millions of dollars from administering them.

An increasing number of people adopted a transgender identity and underwent the procedures doctors said would help, then later dropped the transgender identity but still had to deal with the side effects of these procedures. This group of people is commonly called detransitioners.

We strongly believe detransitioners deserve proper medical care. 

To address one of the barriers they face—getting insurance to cover what is sometimes called “detransition care”—we sat down with Mara Marc, who works at an insurance company.

Here’s what she has to say.

Many detransitioners are getting care covered by insurance already.

There is a misconception that no detransitioner treatments are covered, which prevents many people from even trying to seek coverage. Yet many people who make this claim are actually getting some detransitioner care already, and may not even realize it. For instance, men who had orchiectomies (i.e., removal of testes or castration) are able to get exogenous testosterone covered by insurance.

Continuing with the orchiectomy example, a more challenging insurance request would be to get reconstructive surgery authorized, such as testicular implants. Insurance does sometimes cover testicular implants after cancer treatment or injury. Few (if any) detransitioners have requested insurance approval (as opposed to simply asking a surgeon for the procedure, which is the next topic discussed), though clearly it would be reconstructive.

When trying to get insurance to cover a procedure, this is the part that cannot be over-emphasized — do not accept from a healthcare provider “insurance will not cover it.” The request is not denied by the insurance company unless the request is submitted and the insurance company actually denies it. To put it another way for the sake of clarity, as this point is very important (as will be further explained), if a patient said to a judge and jury, “my insurance company denied covering implants,” the insurance company could rightly state, “we didn’t even know he wanted them so no care was denied,” because the surgeon never submitted the claim to the insurance company. This is an essential point, as patients only have appeal rights if a request is actually submitted to an insurance company by the healthcare provider and denied. Patients’ rights activists fought long and hard for you to have appeal rights — please utilize them! 

If the insurance company denies an initial request for coverage, the next step is appealing it.

Appeal rights are very misunderstood. Many people mistakenly believe that there is only one appeal level, and that it is determined by the insurance company and they always uphold the denial. In actuality, there are multiple levels of appeals, and usually only the first level is decided by the insurance company (depending on the type of insurance plan). The appeal system is set-up to not need a lawyer, and one does not need to speak English or be highly educated. It is a very accessible process, which, again, we can thank patients’ rights advocates for.

To return to the orchiectomy example, let’s pretend the initial request for reconstructive surgery is unfortunately denied. In the USA, all denials must be in print and provide appeal information. So check your mail, and follow the instructions to request an appeal (which entails simply calling your insurance company to request an appeal). This first level internal appeal will likely be denied, but there’s a much better chance of the denial being overturned on the second or third appeal. Sometimes an insurance company representative doesn’t even bother to show-up at the court level (even though they are typically done very conveniently on videophone), and the judge will rule in your favor by default (it happens more than you think).

In addition to hopefully getting care covered, insurance denials are tracked. It’s very important for insurers and the government agencies that provide insurance oversight to be aware of detransitioner care requests and denials. Ultimately, this may facilitate getting care covered upfront as well as help pass legislation to enshrine detransitioner care into law. Also, it can be a tracking tool for how many people are detransitioning.

A few tips if you do appeal: It’s helpful to have letters from healthcare providers, especially for second and higher appeals. Be prepared for what you’ll say. For example, you might want to explain that transitioning is covered and that your request is transitioning (I would, frankly, omit the word “detransition” at this point in the process. I understand it can be difficult for detransitioners to use that word, but part of being outcome-oriented and strategic is explaining things in a way that a judge and insurance company understands, and using words that are already protected in healthcare law and regulations. This is, after all, technically a request for transition from one sex’s sex characteristics to another sex’s sex characteristics). Make sure coding on requests is correct. Convey the personal toll that body dysphoria is causing by not having the procedure.

No matter how much you or your provider thinks a treatment might not be covered, be it hair removal, breast reconstructive surgery, voice training, or baldness treatment (including wigs) caused by so-called gender-affirming care, consider submitting a request to insurance. The hardest part might be convincing a healthcare provider to submit the request, but the provider must if you want to utilize your fought-for appeal rights.

Who knows, maybe the request will be immediately approved — you’ll never know unless the provider submits the request to the insurance company. 

Writer Mara Marc works in the utilization management department, also known as the authorization department, of an insurance company.