Endometrio$i$ is a costly disease, both emotionally and financially.  Treatments for the disease can range from hundreds to thousands upon thousands of dollars, putting strain on both your pocketbook and your psyche.  To compound the problem further, some women are so debilitated by the disease that they are unable to work - and therefore have no insurance at all, with limited "disposable" income they can designate for healthcare costs.  Even those with insurance coverage know they have no guarantees: many have had to meet skyrocketing deductibles before coverage picked up; have had prescriptions go uncovered; have had surgeries only partially paid for - or not paid for at all.  Traveling "out of network" - or out of State altogether - to obtain treatment with an Endometriosis specialist throws an even bigger wrench in the works.  Delays in appeals, denial of coverage, exorbitant co-pays and miles of red tape presented by insurance companies often make it extremely difficult for an Endometriosis patient to get the help she needs.  Fortunately, there are loopholes in every healthcare roadblock.  Whether you have insurance coverage or not, the following suggestions may be helpful for you.

Talk to Those in the Know
As with all things related to Endometriosis, the first - and best - approach to learning the "how to's" of this disease is speaking with other patients.  They are the ones who have been where you are and have expert advice to share.  Idea and experience exchanges are the way to find the answers you need.  Stop by the Endometriosis Research Center's online community to discuss financial and other aspects of Endometriosis with those who understand at: http://groups.yahoo.com/group/erc.

Understand Your Policy
Speak with your company's insurance representative to review your coverage choices and policy benefits.  Make sure you understand what's covered and what's not.  The only "silly" question is the one that remains unasked, so don't be afraid to inquire about every point in the policy - especially the notorious "gray" area so many policies contain.  What is your deductible?  What are the policies for emergency hospitalization and procedures?  What are the provisions for scheduled surgeries, including anesthesia and hospital stay thereafter?  How do you submit a claim?  How can you appeal a decision?  Do you need a referral to an "out of network" specialist?  How much of a prescription cost is covered?  What's your co-pay?  What are the requirements for "elective" surgery approval?  What are the "reasonable and customary" payouts on procedures and medications?  Do these payouts vary by State?  Also check with your company representative regarding disability coverage and healthcare accounts. Some corporations have generous policies regarding both.  If your policies are inadequate, consider getting supplemental coverage.  Ask questions.  You might be pleasantly surprised by the answers.

Keep Records
Send in your own claims and keep copies of everything.  That way, if you don't receive reimbursement within a reasonable amount of time, the company cannot claim that your request "got lost in the mail."  Put everything in writing - claims, inquiry letters, appeals.  Should you ever need to request an explanation or investigation of your claims, you have proof of paperwork.

Ask Your Accountant
Can you take out-of-pocket expenses as a deductible on your tax return?  This is particularly helpful for those who travel out of State to seek treatment with an Endometriosis specialist.  Ask your tax advisor if this is an option for you.

When in Doubt, Ask About...
...Sliding fee scales and payment plans.  Some generous physicians still actually work that way to assist their patients.  Ask your doctor about lowering the costs of your office visits and/or payment plans for visits, procedures, exams, etc.

Dispense as Written?
Are you eligible for the generic version of your prescription, or must you have the brand name?  Ask your doctor and pharmacist if your prescriptions can be filled with the lower cost generics.  [In some instances, this is not possible because the brand names are more efficacious than their generic counterparts].

Pharma Companies are Only too Happy to Help
It's no secret that drug companies are into big business.  Certainly, they can afford to help out patients in need.  Ask your doctor about "sample" medications provided to him/her by the drug company.  Also, inquire of the company which makes your prescription(s) what their protocol is regarding patient assistance.  Often, they will provide you with an application (which must be authorized by your doctor) for entrance into their Indigent Patient Program, which will enable you to request and receive low- or no-cost meds.

Go on "Trial"
Clinical trials are an excellent way to receive (often groundbreaking) treatment for Endometriosis.  Sometimes, trial participants even receive financial reimbursement for their participation.  The medication is free, as is the healthcare provided throughout the course of the trial.  One drawback to this approach is that you may be in the control group and receive a placebo instead of the medication.  Talk to your doctor about clinical trials s/he may be participating in and contact the ERC for more information on current Endometriosis trials underway throughout the United States.

Where and When you See Your Doctor Matters
Does your doctor of choice have a $350 fee just to walk in their office door?  Does s/he not accept any form of insurance at all?  Think effective treatment can only be obtained by the wealthy?  Think again.  Just because your doctor of choice has a private practice with unattainable fees does not mean you cannot see him/her.  Ask if the doctor does clinic and/or teaching hospital coverage.  Depending upon where else the physician may work one or two days a week, you may be able to see them in an alternate setting and have your insurance accepted (or be eligible for sliding fees if you do not have coverage at all).

Too Sick to Work?  Your Insurance Still has to Work for You
If you've been fired or left your job, a federal law protects you from losing your insurance.  Known as COBRA [consolidated omnibus budget reconciliation act], your employer must allow you to keep your policy for up to 18 months after you've left the company.  This option, while you must pay expensive monthly fees for it, ensures that you will not be left without any coverage at all.

"We're From the Government; We're Here to Help"
There are actually Federal programs that can provide assistance.  Be prepared for a lengthy application process, but once approved, you can receive coverage that will help.  Ask your local health services office about MediCare, MedicAid and Social Security Disability Insurance.

Don't Stress!
Easier said than done, of course.  But try not to let the financial burdens and insurance woes of Endometriosis add to your already-high stress levels.  You'll feel worse - and the worse you feel, the more you'll need to worry about insurance and finances to pay for treatments!  It's a vicious cycle.  Be organized and plan out options to manage your healthcare costs, whether through insurance coverage, federal assistance, healthcare-specific accounts or other approaches.  Most importantly, remember you are not alone.  Speak to others and find out what worked for them before embarking on the costly journey of Endometriosis care.

Helpful Resources

The Endometriosis Research Center
Can provide educational materials, advocacy and assistance finding an Endometriosis Clinical Trial near you.

The HMO Page
An EXCELLENT reference for anyone involved in or concerned with HMOs.

Indigent Patient Services, Inc.

Indigent Patient Assistance Program

Complete Reference Guide to Accessing Pharmaceutical Programs for Indigent Clients

HMO Hardball

The Center for Patient Advocacy

HMO Stonewalling Costs Woman Fertility
Article

Also be sure to grab your copy of "Coping with Endometriosis" by Glenda Motta, RN & Robert Phillips, Ph.D.  This accurate, insightful guide to living well in spite of your disease offers a whole section on insurance and financial aspects of Endometriosis care.

Copyright © 2000 by Heather C. Guidone.   All rights reserved.  Do not reproduce without express permission.