Gender-affirming health insurance coverage how-to
Trans people face a number of challenges in getting gender-affirming coverage. Some of these are political, such as living in states like Florida, which are actively hostile to gender-affirming care. Many challenges are largely apolitical, or occur even in politically friendly states.
For example, health insurer provider networks are terrible, and the wait for in-network surgeons is sometimes years long. Frequently, health insurers write their policies misleadingly so patients believe they are inelligible for common procedures such as facial feminization or masculinatization surgery, bottom surgery, top surgery, hair removal, hair transplants, etc. Non-network surgeons sometimes provide misleading information as well, because they get enough business from people who can afford to pay out of pocket.
I am not a lawyer, nor am I a health insurance billing specialist. Yet as a trans person who has sought gender-affirming care and moderates a few gender-affirming care-related Discords, I’ve observed a number of patterns.
It’s impossible to provide a universal instruction manual, even within the United States, because:
- We have fifty states and even more territories, and over fifty sets of regulations for insurers, and each state/territory has one or more insurance regulators (California has two!). Network adequacy standards vary from state to state.
- Not all plans are Affordable Care Act-compliant.
- Different insurers have different procedures and policies and different argots.
In this article, however, I aim to provide you with an outline of a plan, and the tools to prepare for likely obstacles.
Caveats
- My expertise comes from personal experience, not from training.
- These instructions may not benefit people with fewer resources. They definitely benefit people with more free time.
- I wish I knew more about Medicaid/Medicare, HMOs, and EPOs. If you’re dealing with those, please take what I’ve written here with a helping of salt. Because I know nothing about them, I advise everyone to get a PPO, but I know of no reason these instructions wouldn’t also work for an EPO or an HMO. I’ve heard of people using similar strategies with Medi-Cal.
Overview
Here’s a rough outline of the process of getting coverage for gender-affirming procedures:
- Get diagnosed, assemble records and therapist letters.
- Find a provider you like and determine the procedures you need.
- Get your insurer to agree that the procedures are medically necessary.
- Seek an exception to see the provider of your choice (if they are out-of-network).
- Seek a letter of agreement or single case agreement for the insurer to pay the whole cost of surgery (minus your deductible).
- File appeals, grievances, and complaints as needed.
A quick note about examples
I’ll frequently return to Anthem Blue Cross of California and Blue Shield of California as examples, because I’ve worked with both of these in the past. Hereafter, they’ll just be Anthem and Blue Shield, but please don’t get them confused with their counterparts in other states, where procedures may be different. I may also mention Kaiser; I’m typically referring to the California PPO.
I’ll also use the California Department of Managed Health Care (DMHC), which is the larger of the two health insurance regulators in California.
Analogous procedures should be available in any state that is reasonably friendly to trans people and has a decent insurance regulator. Even if it doesn’t, you may have legal options.
First things first: getting a good health insurance plan
This is the trickiest part. If you’re employed as W-2, there’s a decent chance you’ll be choosing from plans offered by your employer.
If possible, you should make sure your plan is compliant with the Affordable Care Act (ACA). If you’re buying an individual plan, you can do this through your state’s exchange or healthcare.gov.
The ACA funds so-called navigators who can help you pick a plan, and they’re generally very good. In California, I send people to Ask Ariana at least once a week. They’re simply wonderful, and can guide you on how to get subsidies, if you’re eligible for Medicare/Medicaid, whether you want an HMO/PPO/EPO, and whether you should shell out for a bronze, silver, gold, or platinum plan. Importantly, navigators’ services are free to you. They can even sign you up for plans in some states.
My advice generally applies to PPOs. For reference, I have a Covered California (ACA) Silver plan with Blue Shield, which is substantially cheaper than its Gold or Platinum equivalents but has substantively similar coverage. I’ve also dealt extensively with Anthem, as I mentioned. I’m less familiar with Kaiser, though Kaiser is relatively good for gender-affirming care (at least in California).
If you have a choice of states, always pick the state with the better regulator. You can’t purchase across state lines, but maybe you have a choice between residing in Florida or temporarily homesteading with family in California. Research the regulator for the states in question and make an informed decision.
Another key concern is how long your coverage will last. Are you unemployed and likely to start a new job in three months? It could be difficult to clear some hurdles with your individual plan in that amount of time, and if you change insurers you’ll have to start over.
Some big companies have what are called self-funded plans. Alphabet, Meta, Apple, Starbucks, and others have special relationships with insurers. If you get lucky enough to have one of these plans, you may not need my help anymore. But remember that not all self-funded plans are created equal.
You may also want to find out if your insurer has a case manager who specializes in gender-affirming care. Blue Shield has several. Call them and make friends. They can ease the process for you in many ways (e.g. electrolysis coverage). Remember that these individuals are employed by your health insurer and have an incentive to reduce your utilization, so take what they say with some more salt.
Cover your bases
You need a primary care provider (PCP) and a therapist at minimum.
The PCP usually has to assert that they’ve been treating you for gender dysphoria (whose diagnosis code is F64, by the way), usually for at least a year. The exact requirements vary from insurer to insurer, but are generally dictated by WPATH.
The therapist has to write a letter whose contents are likely described in your health insurance policy. Sometimes you need an additional letter from a provider who isn’t your own.
Your plan may also require referral to a specialist.
Look at the insurer’s network provider list and find a provider you trust
Most of the time, health insurance networks are painfully bad, and it takes months to see a specialist. With that said, if there is a network provider that you trust to deliver the care you’re seeking, that route is likely to be easier than the non-network route. Either way, getting in-network coverage for a non-network specialist requires you to show that the network is insufficient in some way, so you should be generally familiar with your options and have an idea already of why each provider won’t work.
The ACA requires that compliant plans provide you with a specialist within a few dozen miles of your home, and generally within around fifteen business days. The exact numbers may vary state to state and specialty to specialty, but the distance and time requirements are two of the strategies we can use to appeal for network exceptions.
Specialists also have scopes of practice. For facial feminization or masculinization surgery (FFS/FMS), you may want someone with all three of craniofacial, orthognathic, and plastic. Many FFS/FMS surgeons provide chondrolaryngoplasties, which are tradtionally otolaryngological surgeries. Even if you find one who does five of these a week, there may be room to argue, “I want an ENT with an expertise in working with vocalists for vocal feminization surgery, and this person isn’t an expert in vocal performance medicine.” Gender-affirming care is a specialty in its own right, but that doesn’t mean you need to see a person who mainly does bottom surgeries for a mastectomy.
For many specialties, the network simply won’t have anyone with the necessary expertise. Anthem has zero electrologists in its network as of this writing. In cases like this, it’s much easier to go out-of-network.
If you go with a non-network provider, ask them if they handle prior authorizations (many do). You can also consider asking if they’ll help with gap exceptions or letters of agreement, but beware: they may try to convince you that this route won’t work, because it creates additional work for them, and because they already have plenty of other customers willing to pay out of pocket. Be kind and respectful, and remember that they’re not obligated to help you.
Network exceptions and prior authorizations are time-consuming, so if you go out of network, try to find one provider of a service and stick with them.
But wait, I can’t afford to pay out of pocket for a non-network provider
In this section, we get to the meat of the issue. Because of the ACA’s network adequacy requirements, you are entitled to seek a non-network specialist if your insurance network lacks an in-network specialist.
Documentation is really important here. I suggest keeping a communications log where you include a copy of each message you exchange with your insurer (and every payment-related message with your provider as well). Summarize phone calls, too. You may need to refer to this log later, if/when you have to appeal a denial. I guarantee your insurer is keeping such a log about you.
Here are a few useful concepts and tools:
Prior authorization
Prior authorization (sometimes called precertification) is a statement from your health insurer that a procedure is medically necessary. They won’t cover things that aren’t. You’ll need to provide documentation in the form of medical records, letters from therapists, etc. You’ll also need an ICD diagnosis code (generally F64.x) and some set of CPT codes that describe the procedures in question, e.g. 17380 for electrolysis, along with the number of units of that procedure (sometimes in hours or half hours or some other time increments).
Your prior authorization also has to be associated with a specific provider, and for that you’ll generally need the provider’s NPI and tax ID. You can usually look up the NPI, but may have to ask them for the NPI. You should also ask the provider you’re using what CPT codes they use if you’re doing the authorization yourself. Medical billing is an expertise in and of itself, and I find it particularly difficult to locate correct CPT codes without simply asking the provider’s billing specialist.
If you don’t receive prior authorization, your health insurer most likely will not pay (or at minimum, getting reimbursed will be an uphill battle), regardless of whether the provider is in their network.
Sometimes the provider will handle prior authorization for you. Sometimes you can get your PCP to help. One Medical has been kind enough to handle prior authorizations for electrolysis for some people. Sometimes you may have to handle it yourself, but your provider will usually provide you with the necessary CPT codes.
In general, it’s a lot easier for the provider to do it, because they typically have access to an electronic portal such as Availity. Some insurers have forms (Blue Shield of California) and others have “utilization management” phone numbers (Anthem Blue Cross). Most will tell you the provider needs to submit the prior authorization, but there’s usually no authentication process unless you’re using an online portal.
Many insurers want all prior authorization documentation to be faxed. There are inexpensive online fax providers that offer no guarantees around privacy. I cannot recommend these. Some banks will fax documents for free. If you do send a fax, keep in mind it might get lost, so consider following up to verify receipt.
Some insurers also perform block denials of prior authorizations, or they’ll deny you for cause (like missing records). There’s a process for appealing a denial which I’ll discuss shortly.
Insurers may also reject requests for prior authorization if you submit them too early. This line is usually about two to three months before the procedure, which may actually work to your advantage when you get to the next step.
Network exception requests and network adequacy
Different insurers have different internal jargon for network exceptions and slightly different processes for getting them, and it helps to know the magic incantations to utter to service personnel.
You already got your health insurer to agree your proposed medical intervention is medically necessary. With that agreement, it’s possible for you to seek a “network exception.” Some insurers use the term “access to care exception” instead, and may even claim that a gap exception is something different. Sometimes you write a letter, and sometimes you fill out a form. I suggest making your request in writing unless completely unavoidable, and remember to put it in your log.
Think of a network exception as being based on three criteria:
- Appropriateness of the specialization
- Time until the specialist can see you
- Distance from your home
I suggest arguing for exceptions using all three, if possible. For example,
Dr. A has craniofacial and plastics expertise, but I need a sliding genioplasty (CPT 21121), which requires orthognathic and maxillofacial expertise. Moreover, Doctor A’s consult waitlist is two months, and the wait for surgery is even longer. Dr. B is an otolaryngologist, and is significantly less qualified than Dr. Lee to perform a type III craniotomy (CPT 21138); and Doctor B’s consult waitlist is 5 months.
The insurer doesn’t need to know you’ve been waiting for two years to see Dr. Lee already. They don’t need to know you already paid (if you already paid).
They may also not grant the exception in time for your surgery, which can be frustrating and expensive. If you wish to get reimbursed, however, you absolutely need to at least show you asked for the exception before you get surgery.
Letters of agreement and single case agreements
Insurers have rate tables that they use to reimburse providers for procedures. These rates are based on the CMS Fee Schedule. Usually an insurer will not tell you what their reimbursement rate is for a specific procedure. Chances are, there’s a significant difference between that rate and what your non-network specialist is willing to accept. Most of the time non-network providers refuse to negotiate with insurers altogether. Your goal is to get your insurer to agree to the price the doctor asks.
Remember that your insurer is under contract to provide you with services, and it’s often easier (less expensive) for them to agree to a surgeon’s fees than to find you an alternative provider.
I recommend asking the insurer for a letter of agreement (LOA), sometimes called a single case agreement (SCA). The idea is that the insurer negotiates an agreement to pay a specific price for your set of procedures (which may end up being the actual cost you were quoted by the provider).
Typically, non-network providers won’t accept payment directly from the insurer; they want you to pay up-front. However, sometimes an LOA or SCA gets you around that obstacle. Whether it saves you from making a huge up-front payment or not, the LOA/SCA prevents your insurer from doing a bait-and-switch with your reimbursement. It should state how much the insurer will pay for the procedure.
With procedures like bottom surgery, which have very long wait times, you may have already had to pay for the procedure by the time you’re eligible to ask for a network exception. Unfortunately, I don’t have a clever way around this obstacle.
Sometimes it’s possible to seek retroactive network exceptions, particularly for lower-cost procedures with no network providers at all (e.g. electrolysis). I don’t recommend this approach unless you have no other choice. If you do want to seek an exception retroactively, make sure you can document that you contacted your insurer about the lack of network options.
Appeals and grievances
Most insurers routinely improperly deny prior authorizations and network exception requests. It’s almost guaranteed that at some point in this process, you will need to file an appeal. Anthem makes appeals quite easy (you can use Sydney, their online member portal), and takes the maximum permitted amount of time to deny them (usually thirty days).
If your appeal is denied, the next step is to file a grievance, also with the insurer. The process is extremely similar to an appeal. They may also deny the grievance after thirty days. If they ever take longer than thirty days on an appeal or grievance, you can immediately jump to filing a complaint with the state.
Last time I told Blue Shield I wanted to appeal something, they emailed me a grievance form, and have referred to it in subsequent communications as a grievance. This experience leads me to believe they skip the appeal step, but your mileage may vary.
Filing a complaint with the state
Once you’ve been denied on both appeal and grievance (or once they’ve taken longer than thirty days to reply to either), you can ask the state insurance regulator to intervene by filing a complaint. In California, most of the time you deal with DMHC (but check, because some plans answer to the California Department of Insurance).
Send DMHC all of your evidence that your insurer denied you improperly, and tell them what you want:
I’m seeking an access to care exception from Blue Shield of California for the CPT codes listed on the attached prior authorization, on the basis of diagnosis F64.0. BSC’s network is inadequate because (reasons). BSC has already agreed that the attached CPT codes are medically necessary for me. I filed a grievance with the insurer and they failed to address the concerns raised.
If you got all your ducks in a row, DMHC will call your insurer and have a conversation with them. Depending on the complexity of your claims, they’ll write you a letter explaining their decision or an attorney will call you to discuss it.
Sometimes DMHC makes mistakes or gets the facts wrong. Typically your first line option is to call them yourself (and they usually answer the phone fairly quickly!). If you want to appeal one of their decisions, you usually need to open a new complaint (and make sure to reference the old one).
Getting help from the community
Discord is one of the best places to go for help. I run the F64 Trans Insurance Help Line, a Discord server (and you can contact me for an invite). If you’re getting a major gender-affirming procedure such as bottom surgery or FFS/FMS, there’s probably a surgery Discord for you. I suggest asking around on Reddit for these.
Getting professional help
I don’t know of anyone who offers professional help with filing health insurance appeals, but I know this is a profession that must exist. If you know of someone, please leave a comment with their information.
I (and others) provide free advice on the F64 Discord, but if you want someone to actually navigate the process for you, please consider hiring me. I learned most of these lessons the expensive way, and getting paid increases the amount of time I can afford to spend helping people who can’t pay.
You can also tip me or support me on Patreon.