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Insurance: Petitioning for Disputed Items
written and compiled by doctordee
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Petitioning for Medical Coverage of Disputed Treatments
What happens when your medical coverage denies payment for treatment or consultation, or denies you access to treatment or consultation?

First, arrange to have a case manager or other person deal with you directly. Get a contact that is knowledgeable and competent. Make a note of their name and extension and department.

Second, get a referral or recommendation from your doctor for the consultation or treatment.

Thirdly, attach to your appeal -- justification for your having this consultation or treatment. This should be reputable information from medical journals, not ads from internet sites.

Fourthly, if they are refusing something that they cannot provide in their organization or network, ask them who they have who CUSTOMARILY treats your rare cancer, or CUSTOMARILY does the procedure.

See the Center for Health Care Rights
Center for Health Care Rights

Your insurance company or HMO or Army hospital refuses your request for a consultation with a sarcoma oncologist.

Contact the institution and either arrange a case manager for your case, or ask who the person is who you should talk to about petitioning for your sarcoma oncologist consultation.

Have your GP or internal medicine specialist or oncologist or surgeon write a letter stating that you should be seen by a sarcoma oncologist to discuss your treatment options and have multiple questions answered.

Attach PubMed abstract printouts. If you go to "Sarc Ammo" you will be able to link to the Pubmed abstracts and print them out. These 6 references each indicate that patients with sarcomas have better survival statistics if they are treated at a sarcoma center.

If the institution is resisting sending you to a specialist, DEMAND that they provide you a list of physician/oncologists who "customarily treat" LMS rare cancer. VERY IMPORTANT.

Usually the accumulation of recommendations and evidence will do it. You can also name state and federal boards of administration, and tell them that you WILL contact the state/federal government sites.

More detailed instructions can be found below.

August 2005
Insurance Disputes 1

Insurance Companies

Petitioning for Insurance Coverage disputed treatments

See the Center for Health Care Rights
Center for Health Care Rights

There is an organization called the National Patient Advocate Foundation that may be able to help / provide resources for patients with insurance problems, including problems with clinical trial coverage. They do advocacy issues.
National Patient Advocate Foundation

There is also an organization called the Patient Advocate Foundation. It is a national non-profit organization that serves as an active liaison between the patient and their insurer, employer and/or creditors to resolve insurance, job retention and/or debt crisis matters relative to their diagnosis through case managers, doctors and attorneys. Patient Advocate Foundation seeks to safeguard patients through effective mediation assuring access to care, maintenance of employment and preservation of their financial stability.
Patient Advocate Foundation
Patient Advocate Foundation

Clinical Trial Costs

B wrote:
The insurance company rejected claims for treatment for the ET743 Clinical Trial. We had our hearing last night. Even the local oncologists went to the hearing with us! I guess the next step is to appeal at the state level. Does anyone have any other ideas that we could use to get this covered?

1) Take a look at this NIH National Cancer Institute site
Clinical Trials
Patient Care Costs

2) If your insurance carrier is already covering clinical trials in other states, they may find it harder to reject your claim. Current list of states that require insurance companies to cover clinical trials costs.
States that require insurance to pay trials costs

Retiree Denied Sarcoma Oncologist Consult or Treatment.

J wrote:
Dad is retired from Caterpillar and has an appointment with Dr. Demetri, the insurance company said they would not pay for ANY treatment or office visits...they said they wouldn't even cover surgery

1) Ask your dad get the denial in writing including specifically (citing chapter and verse) why they say it isn't covered.
2) Review the Summary of Coverage booklet that's provided to every employee or retiree and see if the reason for denial matches the summary.
3) Most Summaries of Coverage make reference to the insurance contract between the employer and the insurance company. In most cases the employee or retiree is entitled to request a copy of the insurance contract. If not, then it can probably be reviewed on Caterpillar's premises. Review the contract.
4) Contact Caterpillar's Human Resources (Personnel) Department and see if they agree with the insurance company's interpretation of coverage. If not, they should help your dad get the decision reversed.
5) Was your dad a union man? If so, the union will help him.
6) See if your state's insurance department will help. What state does your dad live in?
7) See if you can get any help from the Patient Advocate Foundation.

Patient Advocate Foundation
Patient Advocate Foundation

Patient Advocate Foundation
700 Thimble Shoals Blvd
Suite 200
Newport News, VA 23606
Phone: (800) 532-5274
Fax: (757) 873-8999

Case Managers
Also check with your insurance and with your benefits dept. LMS is complex enough that often you can ask for, or insist upon, a case manager. Here is a little excerpt from a friend of mine at a national insurance company:

Just wanted to send a few tips on working with your health plan and requesting a case manager.
If your health carrier is the same carrier that you had when the patient was originally diagnosed and treated, you should have a very easy time persuading the health plan to assign a case manager. You may even get the same nurse. If not, you might want to put together a written request for the current health plan, to document the original treatment plan. Just remember to stay as calm and unemotional as possible.
They'll know how urgent this is and work with you to find the best solution.
Many health plans automatically assign a case manager to complex cases.
I'd suggest calling the health plan and finding out how to contact case management directly to determine whether they have an automatic assignment protocol, or if you need to request the case manager.

Check with Customer Service and or case management to find out how to select or help in the selection of an oncologist. Find out if you are absolutely restricted to a limited network of physicians, or if you can seek services from a wider network of physicians. You may want to do a search to find out if there are resources available to help you shop for a specialist; look for personal recommendations, and don't be afraid to schedule an interview process.

If you're contemplating alternative treatments, ask whether any alternative/eastern medicine services are covered, or if there are any discount relationships with alternative/eastern medicine practitioners available. Blue Cross and Blue Shield of Minnesota has recently established an alternative medicine network of providers with whom the plan has negotiated discounts for services. Minnesota subscribers can access alternative services directly, without a referral, for the negotiated discount amount. California is so far ahead of the Midwest on this stuff, its possible that your health plan has a similar arrangement.

Ask the patient's current physician if he/she is comfortable working with you to find the specialists that you are confident about. Ask him/her to recommend a specialist that they would select if they or a family member needed services. Good bedside manner is nice, but you may want to make sure that everyone understands that you want honest, complete information.

Speaking of complete information, Mayo Clinic has a website, and they allow you to register and ask questions of the specialists. They might even be able to make a recommendation on specialists in your area. It might be worth your while to investigate this resource, if you haven't already.
If you hit a total roadblock, find out what the patient rights are in your state. Every health plan has a patient/member bill of rights, and many of them are based on state mandates. Find out if there are any advocacy groups in your vicinity, and check with the Commissioner of Insurance for the state, to find out if there are any mandated appeal provisions at the state level that you could pursue.
Insurance Disputes 2

Fighting with Insurance Companies for Coverage

>>Eve and I have been waging a battle with our medical bureaucracy for over a month now. We have finally convinced them that Alimta is indeed available to Peritoneal Meso patients. Although not here in Canada, there is sufficient legal approval to get it in the States<<

Some ways to deal with this:

#1. Social Workers or caseworkers:
There has been some recent discussion on social workers as patient advocates. During my wife's treatment path we used the social workers extensively. They ARE a patient's advocate, and can help when things "seem to fall through the cracks". I won't give specific examples, but it got to the point that when my wife was referred to a new facility, one of the first things we would ask is to contact the social worker to see us. We would introduce ourselves, explain our situation, and tell them we would call them when needed. And they always seemed to come through when we needed them. It was not an additional cost to us to use the social workers in the various facilities. They WANT to help. I would recommend contacting them and asking what they can do for you.

#2. Patient Advocacy Foundation.

You need to have your ammunition in place, but the Patient Advocacy Foundation
800-532-5274 has "scripts" on the manner you deal with your insurance company to get them to approve it. It is a useful resource.
Patient Advocate Foundation

Guides in PDF for Patients - including Managed Care Answer Guide and Your Guide to the Appeals Process
Guides for Patients

#3. General Approach

R writes:

My wife is a rare cancer survivor. I work closely with patients and physicians that treat this disease and unfortunately I have had to battle each of the majors for my wife 's treatment Prudential, Aetna (you bet ya), and Cigna. I am a scientist and have managed in business for many years. I am not a physician. The opinions I express below are based on my personal experience in fighting insurance carriers to keep my wife alive based on my scientific research on the cancer and in supporting patients in finding treatment and support of advocacy for many patients suffering from other cancers.

You need to put it to them first yourself BUT get really prepared and BE SURE this is the only treatment that holds reasonable promise before you start on this path. Once that is determined then RAISE THE STAKES TO THE HIGHEST LEVEL. Your life depends on it.

R continues:

Some points based on my past experiences.

1. Have at least (2) doctor's letters advise that this is the only treatment that might save your life.

2. Get the stats on your cancer and mets and lay that out on paper

3. Put the specifics of your case on one page.

4. You will have an insurance company Oncology Nurse or case manager - get their name and the name of the Medical Director for the area that serves you.

5. Get your employer benefits director involved if you are employed. (If you have a large employer that is really good because the insurance carriers listen - remember they don't give a damn about anyone. It is all about money to them.) So that is where and what they understand. This is a war for your life. You have to make the price of their denial intolerable for them!!!!!!!!! I cannot stress this enough.

6. Try to find out if the denial was done by a nurse (which I bet it was). If so you may have them for practicing medicine without a license as a physician. Keep that in mind.

7. Pull the latest data on the treatment you want. I know it says, or might say, that it is less invasive, and that it can be essentially a very short stay in the hospital for the procedure. Get the facts and make sure you know what the procedure will cost versus any other possibilities if there are any.

8. Pull all that together and make these points:
a. Only way to save your life
b. Rare cancers/NCI suggests clinical trials etc.
c. You have documented your physician's recommendations that this is the procedure that should be done.
d. It is very cost effective.

9. Right before you send it get with your local State representative in your State and your Congressman. CC them on the letter.

10. I do not know what State you are in but suggest you call the Attorney General's Office AS WELL AS the State Insurance Board for assistance. (Let them help you fight if they will - in Texas they are banging the hell out of the insurance folks and they listen because they have been repeatedly fined)! They should be copied in on the letter also.

11. Site appeals. When you appeal for a treatment that was approved for tumors in a certain site, like liver, though it is a different cancer than the one you have.

My information is that FDA has only approved TheraSpheres on the basis of a "Humanitarian Devise Use" in the US for Hepatocellular Carcinoma (HCC).

Now consider a site appeal. That is when you use a device or drug that treats another cancer in that site. So it is a liver site appeal. You make the point that you have cancer in your liver and want TheraSpheres done and it is an approved device for liver tumors.
The TheraSphere Docket and exception is FDA # H980006. It was provided to MDS Nordion, Inc. maker of the TheraSphere, Ontario Canada.

12. *** Make it a national issue after that and petition Nordion [or whomever you are tarteting] and the Canadian government to allow the procedure to be done in Canada and get your Congressman and Senator involved. CC them on every correspondence.

13. Bottom line, wake their butts up that you are in danger of losing your life if you cannot get this treatment and they will be responsible for that outcome.

14. Document everything and I mean everything related to your case.

15. If you send them a letter keep it somehow on 1 page and send by certified mail with appropriate copies to above: benefits; state rep, state senator, US Congressman, US Senators, State Attorney General, State Insurance Board, Doctors who you have a letter from. (Attach their letters).

I have yet had this general methodology fail. Go to the top right away, don't screw around with the people answering the phone.

#4. Insurance company websites:
Here are some consumer oriented websites:

Health Insurance Consumer Guides
Consumer Guides

US Dept of Labor - Health and Benefits
US Dept of Labor

A Consumer Guide to Handling Disputes with Your Private or Employer Health Plan
Disputes with Private or Employer Health Plan

Patient Advocate Foundation - Under "Resources" has a "Managed Care Resource
Guide" to help answer questions in selecting an insurance plan.
Info on insurance plan choices

last updated August 2005
HMO Saga

An HMO Saga

Petitioning for Coverage of Disputed Treatments

Donna wrote:
I cannot get my GP or Gynecologist to give me a referral to MDA cancer center. They both said my Insurance would not allow it.(HMO) Advice?
I have to go to bed now as I have a bit of a hangover from my pity party(angry party?) yesterday and i can't possibly read or think another thing today! :)

Doreen wrote:
Dick, Donna has LMS stage iv lung mets, needs referral to a sarcoma center, and sarcoma oncologist and her HMO doctors are refusing it. She lives in TX, needs information about Texas laws to make the HMO and its docs sit up and take notice.

Her doctors are really creepy and really do not understand LMS at all. [Her gyn onc allegedly said she didn't need surveillance...that the margins were clear and go home and enjoy.... and then was surprised that there were lung mets, as this was a uterine cancer...]

If I hadn't already cut my hair very short because of the chemo shedding, I would now be pulling it out in handfuls ANYWAY...

Dick's answer to Donna's HMO crisis
Dear Donna:

Get hold of the Texas Board of Insurance.
Consumer Information - HMOs
TX Board of Insurance

Texas Department of Insurance - Complaint Forms/Insurance&HMOs
Insurance Complaint Forms
[He here gives a contact that he worked with at the Texas Dept. of Insurance for HMOs, her fax and email, and her direct number. Their help line is 1-800-252-3439 ]

If you are going to see a Sarcoma Oncologist at M.D. Anderson ... here is the main M.D. Anderson link:

Also for patient advocacy issues and information see these sites from the Patient Advocate Foundation
Patient Advocate Foundation

If you file a complaint be sure that you also contact your State Representative, State Senator and U.S Congressman at the very least.

**If you write a letter and the HMO is resisting sending you to a specialist DEMAND that they provide you a list of physician/oncologists who "customarily treat" LMS rare cancer. VERY IMPORTANT.


If you don't live in Texas, find the State Department of Insurance for your state, and your state Senator, Representative, and Congressman. They will very likely have an online presence.

revised August 2005

Dealing with Medicare

Petitioning for Coverage of Disputed Treatments

From Margaret
Emergency Medicare Question
I have an emergency and only have a few hours to figure it out - Georgia was on Gemzar for two months and then on Navelbine for the past three months. We received five letters yesterday from Medicare stating that they had reviewed her case and none of these chemo treatments were going to be paid for! They said she did not fit the criteria for these chemotherapies. The Navelbine has brought stability to tumors that were otherwise doubling in size in less than two months.
I've called Medicare but they said that they had reviewed the case twice and the same decision was made. Georgia's due to have her next treatment today - in six hours. Any suggestions before we get to the doctor's office and face this dilemma?! Please write to me directly at so I can receive any advice you have to offer immediately. Thanks!!!!!

From Margaret
Site Appeal
Great news! I spent several hours on the phone with Medicare this morning, working my way up the ladder of authority. Finally I reached someone who was sympathetic to the situation and did more than say they were sorry, there was nothing more that could be done. I explained that LMS was an extremely rare cancer and there was no "gold standard" for it. I explained that the chemos they were denying were actually working and saving Georgia's life.
She asked the name of the cancer and looked it up - nothing. Then she asked where the tumors were located and I told her. She did some extensive research and found out that by coding the bills in a slightly different way, they would be paid! She even went so far as to call the gal at the billing office and explain to her how this needed to be done! When we arrived at the oncologist for Georgia's chemo treatment he told us that he would have gone all the way to court to fight this for her and would never have just cut off her treatment. But he was extremely thankful that we had pursued the matter and found the simpler course of action. So Georgia got her chemo, the doctor was happy and the day was good. Thanks to everyone who responded with wonderful advice and experience. You're all the greatest!!!! Margaret

What arguments did you use?

I explained repeatedly as I worked my way up the ladder of authority that LMS was an extremely rare disease with no "Gold Standard". The few chemos (Adriamycin and ifosfamide) they had listed as approved for this disease were far more harmful and less of a chance of working than what Georgia was already taking. I also had the advantage that Georgia had just had a CT scan showing that the Navelbine was indeed providing stability to tumors that were otherwise growing rapidly. The manager I finally spoke to last asked where the tumors were now. I told her that they were in the retroperitoneal area and left lung. She did some extensive research and said that if we billed it as a "peritoneal neoplasm" instead of LMS, it would get paid! She even called the doctor's office and explained to the billing office how to do this. I'm sure it helped a bit that my background is in health insurance, and I'm sure it helped even more that I simply would not take no for an answer. When we got to the doctor's office that day, both he and the billing gal thanked me profusely. He said that he was going to appeal the decision and would have gone to court to get this paid if need be. He would not have stopped the treatments, and for that I was thankful. But he was very appreciative that he would not need to spend hours of his time battling this obstacle. In the end: the bills get paid, Georgia gets her treatment, and ol' Margaret ends up feeling pretty good about herself - not bad all in all:)

The Official U.S. Government Site for People with Medicare
Medicare Information

Patient's Bill of Rights in Medicare and Medicaid

revised August 2005

Army Hospitals

Petitioning for Coverage of Disputed Treatments

Army hospitals, and most military health care systems, usually have one MD assigned as a "primary care provider" for each patient. This is the person that needs to refer their patient to a specialist. If they do not cooperate, then go to the hospital administration. If EVERYTHING fails contact the patient's congressman.

At present the military medical care is in a state of flux, particularly with regard to the retirees, who had been promised full medical care "just like on active duty", which may not be in the process of being delivered.


The information on this site is not a substitute for professional medical advice. You should not use this information to diagnose or treat a health problem or disease without consulting with your doctor. Please consult your doctor with any questions or concerns you may have regarding your condition. Copyright 2001-2010 LMSWEBSITE