As an endometriosis patient who went 31 years without a diagnosis, connecting with a high volume excision surgeon who was actually trained in the true identification of endometriosis was like a dream come true. This doctor knew about all my symptoms, recognized and validated my experience, knew how to do the only type of surgery that would remove the lesions – and best of all bolstered my belief in myself, and my symptoms. The feeling of having a medical provider sit across from you, look you in the eye, and say that he believes you have endometriosis is almost as healing as the surgery itself.
Soon after, I booked my surgery date – having absolutely no clue about how I was going to pay for it. I ended up appealing to my insurer who paid the entire thing, and now as part of my advocacy work, I actually teach women how to do what I did. Here's what I learned along the way.
Endometriosis patients get caught in what's called in the healthcare field, a “care gap” or an “access to care gap.” What this means is that most insurers do not pay the labor costs of the surgeon for excision surgery. The reasons for this “care gap” are multi-factorial.
- A 1992 Medicare Part B ruling grouped removal of endometriosis via fulguration, ablation, coagulation, and excision as one and the same thing.
- All insurers base how they reimburse on Medicare tables. There is literally no code in these tables for excision surgery because of the above.
- Excision is the only specialty not recognized by the American Medical Association (AMA). There are no boards or standard certifications.
- The American Congress of Ob-Gyn's (ACOG) also does not recognize excision as a specialty, and does not recognize excision as the gold standard of surgical therapy for endometriosis – even though there are hundreds of clinical, peer-reviewed journals that say otherwise.
- Medical schools don't teach excision or identification of endometriosis – because doctors literally cannot make a living doing it unless they are at a major university.
- “Standard of care” protects doctors. This healthcare term basically means that if the type of treatment you are giving patients is similar to what your peers give, you are protected from negligence charges. Even when, as in the case of endometriosis, hormonal treatments including the pill, have been shown to be palliative for many women at best, and further damaging at worst.
I am detailing these practices because endometriosis patients must be aware that what they are going up against are huge structural issues they have no control over. This is important to remember for your own sanity when you make your appeal.
For patients, as we know, all of the above is a nightmare. Surgeons don't get paid by insurers, so they either have to work at a university, or only accept direct payment from patients. Patients don't always have access to a surgeon at a university. Meanwhile, getting caught in this “care gap” as an endo patient means your symptoms worsen while you try to figure out how you are going to pay for the surgery.
So, what to do?
The number one thing to remember when appealing to your insurer: their business model assumes that patients will give up. So the trick is, never give up!
It is essential you mount your case six to eight weeks before surgery (even though many women have appealed post-surgery and gotten reimbursed for some or all of their expenses). Appealing pre-surgery gets you the chance to have a peer-to-peer review with your surgeon and the insurer – this can be a crucial part of getting your surgery covered.
Next, you want to be certain that if your insurer agrees to pay your surgeon in-network rates – that your surgeon will actually be able to accept these rates. In most cases, because of the coding issue and non-recognition of the specialty, in-network rates will be literally pennies on the dollar. So if your insurer says “yes, we'll pay in-network” – you must confirm with your insurer before surgery exactly what they will pay and run that by your surgeon to make sure they are able to accept those rates. If they are, get it in writing from your insurer before surgery.
Your best-case scenario is to ask for what's called a Single Case Rate. This is where your surgeon and insurer get together on the phone to negotiate a fair rate for this highly complex surgery. You confirm this rate is approved with a Letter of Agreement, and that's your contract obligating the insurer to pay the surgeon. This is the best scenario because surgeons get paid the rates they deserve, and you, the patient, are off the hook for the medically necessary care you need. You may have a deductible or co-insurance charge but those will be on an in-network basis, which is typically much lower. The principles in a Single Case Rate appeal are exactly the same for a Medicare or Tricare appeal. The process itself, and who you contact may be different, but the clinical evidence you are giving and the way you are giving it is the same.
Persistence and follow-up is key. Contact your insurer, ask for a Single Case Rate, get your surgeon's office on board, have clinical documentation about excision at the ready (letters from your surgeon, your primary care doctor, etc) and be prepared to prove your case. Then call, email – pester! You can prevail.
Meghan Cleary is a writer, speaker, and patient advocate for women's health issues. To access her 90-minute webinar on how to get your surgery covered by insurance, click here.