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Chapter 12 - Insurance and Bone Marrow Transplants

There's a tug-of-war going on between some insurancecompanies and hospitals with BMT patients caught in the middle.On the one hand, hospitals are striving to provide the mosteffective, state of the art health care for their patients. Onthe other hand, insurance companies are fighting to containescalating health care costs. The patients are simply fightingto stay alive.

Between 1988 and 1991 more than 200 people were unableto undergo a BMT because their insurance company would not coverthe cost of the procedure. Many more had their BMT delayed asthey attempted to persuade insurers to pay for the BMT or triedto raise the funds on their own. The good news is that thesituation is improving. The bad news is that persuading insurersto cover a BMT often involves a long, arduous fight a fight mostBMT patients are unprepared to undertake alone.

A 1991 BMT Newsletter survey of transplant centers foundthat an autologous BMT-a BMT in which the patient is his/her ownbone marrow donor-is the type of BMT most frequently resisted byinsurance companies, particularly if it is for treatment ofbreast cancer or other solid tumors. The survey also found that,despite insurers' initial refusal to pre-approve an autologousBMT, correspondence from the patient's physician that includedstudies showing the effectiveness of BMTs in treating thepatient's disease, second opinions from other medical experts inthe field, and evidence that other medical authorities endorsethe practice was often successful in reversing the insurer'sinitial denial of BMT coverage. Intervention by employers andlegal action have also been effective in compelling payment.

Insurance reimbursement for BMTs using mis-matcheddonors (donors whose bone marrow is not a perfect genetic matchwith the patient's) was also cited by survey respondents as aproblem. The costs incurred in locating a suitable bone marrowdonor, performing physical exams on the donor, and extractingthe donor's bone marrow were frequently cited by respondents asexpenses insurance failed to reimburse. What's the bottom line?Don't assume your insurance company willcover any or all costs associated with your BMT. Knowing yourrights, understanding your insurance policy, enlisting the helpof your employer and having a physician who's willing to workclosely with you to persuade your insurer to cover your BMT isessential. If you're one of the many persons whose insurancecompany will pay for your BMT without a fight, be thankful. Ifnot, remember: when your insurance company says "no" don't takeno for an answer. Read on for strategies you can use to secureinsurance coverage of your BMT.

WHAT TYPES OF INSURANCE ARE AVAILABLE?

There are four kinds of health insurance plans prevalenttoday: private insurance, self-insured plans, health maintenanceorganizations (HMOs) and government programs.

Private Insurance

Private insurance is the most common type of plan. Inexchange for an annual premium payment, the insurance companyreimburses certain health care expenses incurred by the patient.Reimbursable expenses are spelled out in a written plandescription which, by law, must be provided to each planparticipant. Private insurance may be purchased by anindividual, or by an employer or association on behalf of itsemployees/members.

Persons with private health insurance can choose thedoctor or hospital who will provide them with care.Reimbursement is typically not available for routine orpreventive health care, and often begins only after a"deductible" has been satisfied, i.e. the patient has paid acertain amount of health care costs out of pocket. There may bea cap on expenses the plan will reimburse and some may becompletely excleded from coverage. As a general rule, your chances of securing coverage ofBMT expenses are better if you're insured th~ough a group planthan if you have an individual health insurance policy with thesame insurance company. This is because largeemployers/associations can exert a great deal of influence overthe private insurance company to cover extraordinary expenses,even if the basic policy does not specifically provide forpayment. A 1988 survey of insurance companies by the HealthInsurance Association of America found that 27 percent do notcover BMTs as a standard practice, but will do so on acase-by-case basis or at the request of an employer.

Self-Insured

A second type of insurance is the "self-insured" plan.If you're covered by a "self-insured" plan it means that youremployer pays your medical claims out of company assets ratherthan purchasing private insurance. Benefits are outlined in awritten plan description provided to plan participants. They'reusually similar to benefits provided under private plans in thatthey allow the patient to choose his or her own doctor andhospital, do not begin reimbursing health care expenses untilafter a deductible has been satisfied, and may cover health careexpenses only up to a certain limit.

Some employers hire a separate company (often aninsurance company) to process employee insurance claims andadminister payments. This arrangement can confuse people intothinking that the company hired to administer the plan isactually the insurer who defines which health care services arecovered. If your employer is self-insured, the decision onbenefits covered, plan limitations, and level of payment aredetermined by the employer, not the plan administrator.

Your chances of appealing a denial of coverage of BMTexpenses are generally better if your employer is self-insuredthan if you're insured under a private plan or an HMO. This isbecause the employer is, in essence, the insurance company andtherefore may have more flexibility to specify health carebenefits.

HMOs (Health Maintenance Organizations)

Health maintenance organizations, or HMOs, are networksof physicians and hospitals who provide health care services toplan participants in exchange for a fixed monthly fee.Typically, there is no deductible paid by participants beforecoverage begins, and routine check-ups and medications oftenexcluded from coverage under private insurance plans are usuallycovered. HMO participants must use the doctors/hospitals on theHMO network; they are not reimbursed for health care servicesprovided by physicians or hospitals off the HMO network, exceptin extraordinary circumstances.

A common myth about HMOs is that all the proceduresperformed at the hospitals with which HMOs are affiliated arecovered by the HMO. This is not always true. Because HMOs arevery reliant on cost-containment for survival, they aresometimes more restrictive about the types of BMTs they'll coverthan private insurance plans, even if BMTs are performed at ahospital on the HMO network. If approved, a patient may havelittle or no choice about where the BMT is to be performed.

Government Programs

Medicare is a federal program that provides health carebenefits for persons 65 and older and for the disabled. Themedical procedures covered by Medicare are specified in theFederal Register. Medicaid is a state-run health insuranceprogram for persons with low incomes. Although Medicaid isfunded with federal matching grants, the states largelydetermine the benefits provided. Some but not all BMTs arecovered by Medicare and most Medicaid plans.

Comprehensive Health Insurance Plans (CHIPs) areavailable in several states. CHIPs provide health insurance forpersons who, because of a serious health condition, cannototherwise obtain adequate health insurance. CHIPs are typicallyfunded by a tax on insurance companies, by state revenues, or bya combination of both. Plan participants pay an annual premiumthat varies according to age and sex. Most but not all CHIPscover BMTs.

Other Plans

Blue Cross and Blue Shield plans are a type of privateinsurance. The "Blues" are not-for-profit organizations thatnegotiate fee arrangements with physicians and hospitals in aspecific geographic area for health care services. Like otherprivate plans, they offer a specific set of health care benefitsin exchange for an annual premium payment. The patient pays adeductible before insurance benefits kick in, and certainmedical procedures may be excluded from coverage altogether.Blue Cross/Blue Shield in some states now also offer an HMO (asdo other private insurers).

Preferred Provider Organizations (PPOs) are sometimesoffered as a lower cost health insurance alternative to personscovered by a group insurance plan. PPOs assemble a network ofphysicians, hospitals, etc. who agree to provide health careservices for negotiated fees. Savings achieved through thenegotiated fee arrangement are shared with plan participants vialower premiums, lower deductibles, etc.

Cancer insurance policies marketed by some companiesostensibly provide extra benefits for cancer patients, However,cancer policies often provide only minimal benefits forhospitalizations under 90 days, do not cover illness orcomplications arising from the cancer or treatment, and haveexclusions or waiting periods that significantly reduce theirvalue. Many experts believe they are not worth the price.

COMPREHENSIVE HEALTH INSURANCE PLANS (CHIPS)

Listed below are states that have Comprehensive HealthInsurance Plans (CHIPs) for the "hard to insure. Ifthe note following your state says "Yes" it means BMTsare not specifically excluded from coverage. There's noguarantee, however, that all BMTs or the entire costof a BMT will be covered. If the notatPRE>ion says "No,"organ transplants are specifically excluded fromcoverage.

California - 800-228-7044 - yes
Colorado - 800-423-6174 - yes
Connecticut - 800-628-7734 - yes
Florida - 800-766-3242 - yes
Illinois - 800-962-8384 - yes
Indiana - 800-552-7921 - yes
Iowa - 800-877-5156 - yes
Louisiana - 504-926-6245 - yes
Maine - 207-582-8707 - yes
Minnesota - 800-382-2000x1624- yes
Mississippi - 601-362-0799 - yes
Missouri - 800-843-6447 - yes
Montana - 800-447-7828 - no
Nebraska - 800-356-3485 - yes
New Mexico - 800-432-0750 - yes
North Dakota - 800-342-4718 - no
Oregon - 800-542-3104 - yes
South Carolina- 800-868-2503 - yes
Tennessee - 800-533-9892 - yes
Utah - 800-662-3398 - yes
Washington - 800-877-5187 - yes
Wisconson - 800-877-1060 - yes
Wyoming - 800-442-4333x7401- no

IS YOUR HEALTH INSURRANCE ADEQUATE?

At a minimum, your policy should provide comprehensivehospital, surgical and medical benefits including hospital roomand board, anesthesia, drugs, nursing care, operating andrecovery room costs, hospital lab tests, surgical procedures,doctors' fees for both office and hospital visits, anddiagnostic exams and check-ups (e.g. x-rays, CAT scans, etc.).

BLUE CROS/BLUE SHIELD OPEN ENROLLMENT

The "Blues" in the states below reportedly have openenrollment periods during which persons withpre-existing medical conditions like cancer may qualifyfor insurance coverage. Restrictions or waiting periodsmay apply, and not all BMTs may be covered.

Alabama................ 800-292-8868
District of Columbia.... 202-484-9100
Maryland................ 202-484-9100
Massachusetts .......... 800-822-2700
Michigan............... 800-258-8000
New Hampshire .......... 603-228-0161
New Jersey.............. 201-491-2729
New York ............... 212-490-4141
North Carolina......... 800-222-4816
Pennsylvania ........... 215-568-8204
Rhode Island............ 800-527-7290
Vermont................. 800-441-4094
Virginia................ 202-484-9100 (DC area) 703-342-7352 (rest of state)

Outpatient services (e.g. chemotherapy at the doctor'soffice), home health care services (e.g. visiting nurses) andprescription drugs are also important benefits. If your policyrequires you to pay a percentage of your medical expensesout-of-pocket, be sure there is a "stop loss clause" or maximumon medical expenses you must pay.

Check the number of days of hospitalization covered(BMTs typically require 28-56 days of hospitalization orlonger), maximum benefits paid annually and over the life of thepolicy (BMTs typically cost $100,000 or more) and specialexclusions, (e.g. whether organ transplants are covered). Besure you're not excluded from coverage because of a pre existingcondition (such as a diagnosis of cancer prior to taking out thepolicy), and that there's no cancellation clause in the eventyour health deteriorates or you make repeated claims forcoverage.

WHEN INSURANCE SAYS NO...

Don't take no for an answer. Often you can successfullychallenge an insurer's refusal to pay for a BMT or other medicalexpenses. It will take perseverance, the cooperation of yourphysician, the help of your employer, and sometimes the help ofan attorney, but it can be done.

There's no guarantee you'll be successful, but as a BMTpatient you're already familiar with fighting tough odds!

By law, most insurers must provide you with writteninstructions on how to appeal a denial of coverage. Follow thoseinstructions carefully, keeping copies of all documents sent toand received from your insurer.

If you're covered through an employee group health plan,contact your employer for help as soon as you know there's aproblem. Employers can often negotiate amendments to theinsurance contract or take "extra-contract" steps to cover theBMT if they're made aware of the problem early on.

What's The Problem?

To successfully challenge an insurer's refusal to payfor a BMT you must know the specific reason that coverage hasbeen denied. By law, you're entitled to a written explanation ofthe denial. It may, however, be a "bare bones" explanation,requiring a follow-up letter to obtain the full details.

Insurers refuse to pre-approve or pay for BMTs for a variety of reasons. The most common are:

• the procedure is experimental or investigative

• the procedure is not medically necessary

• the patient is not eligible for benefits

• the charges exceed "usual and customary" charges for the procedure

EXPERIMENTAL/INVESTIGATIVE

BMTs are often rejected for coverage by insurers becausethey are "experimental" or "investigative." The definitions ofexperimental and investigative vary among insurers. Ask for acopy of your insurer's administrative guidelines, which spellout the circumstances under which procedures are classified asexperimental or investigative.

Insurance companies may consider BMTs a coveredtreatment for some diseases, but experimental or investigativefor others. The type of BMT proposed may also affect aninsurer's determination of whether or not the procedure isexperimental/investigative.

For example, an autologous BMT may be consideredinvestigative when used to treat breast cancer, but notinvestigative when used to treat Hodgkin's disease. Similarly,the insurer may consider an allogeneic BMT a routine treatmentfor leukemia, but an autologous BMT for leukemia investigative. The initial determination that a procedure isexperimentalor investigativeis often made by insurance personnel with no or limitedmedical background. They simply apply the administrativeguidelines regarding "experimental/investigative procedures tothe best of their ability, and may improperly deny coverage. Itmay take little more than a phone call to the insurance companymedical director to reverse the denial of coverage.

Usually, however, it's not that simple. Your physicianshould provide the insurer with results of all studies showingthe BMT to be an effective treatment for your disease, even ifthey're only preliminary results from on-going studies. Thoughthe procedure is still under investigation by the medicalcommunity, there may nonetheless be sufficient evidence topersuade your insurer that a BMT provides you with the best oronly chance for a cure or extended life. A 1988 survey ofinsurance companies by the Health Insurance Association ofAmerican found that 70 percent cover some organ transplantsconsidered experimental/investigative.

Your physician must also convince the insurer that theBMT is a treatment option "generally accepted" by thecontemporary medical community. "Generally accepted" does notmean that all physicians agree the BMT is the treatment ofchoice for your disease. Rather, it means that many respectedexperts believe it to be an effective therapy, and manyphysicians routinely recommend this treatment for patients.References to medical literature that cite the procedure as atherapy currently in use by the medical community as well assecond opinions from other experts endorsing the use of theprocedure will bolster your case.

Insurance companies sometimes rely on proclamations byMedicare, the American Medical Association, the NationalInstitutes of Health, the U.S. Office of Technology Assessment,the American College of Physicians, the National CancerInstitute and similar groups to determine the efficacy of amedical procedure. If any of these agencies have endorsed ormade positive statements regarding the use of a BMT to treatyour disease, your physician should note that fact.

Your employer can play a key role in convincing theinsurance company to cover your BMT. This is particularitytrue if your employer has had a good long-term relationship withthe insurance company and/or is a large client. Employers whoare self-insured have even greater flexibility to extendcoverage for BMTs.

Not Medically Necessary

Most insurance policies exclude coverage of proceduresthat are not "medically necessary," a term whose definition canvary. Ask for a copyof the administrative guidelines relied upon by your insurer todetermine the procedure is not medically necessary.

Insurers and employers often hire a "utilization reviewfirm" (UR firm) to assess whether a procedure is medicallynecessary. Don't confuse the UR firm with the insurance company,or assume that a finding by the UR firm that the BMT ismedically necessary means that it has been approved for paymentby the insurer. A UR firm merely makes a recommendation to theinsurer; that recommendation is not binding.

If coverage of a BMT or other medical expense isrejected because it's not medically necessary, your physicianshould prepare a letter explaining why, in your case, theprocedure is medically necessary. Second opinions from otherexperts who've reviewed your medical records can be veryhelpful. Citations to medical journals and similar authoritiesthat bolster your physician's opinion that the procedure ismedically necessary will also help. If a UR firm determined thatthe procedure is not medically necessary, file an appeal bothwith the UR firm and the insurance company.

Enlist the help of your employer to persuade the insurerto reverse its initial denial of coverage. Your employer'sintervention on your behalf may be very helpful, particularly ifthe insurance company is interested in keeping your employerhappy and retaining the business.

Not Eligible

Your insurer may determine you're ineligible forcoverage of BMT or other medical expenses even though they arecustomarily covered by the policy. This may occur if the policycontains a waiting period before coverage takes effect (e.g. youmust be employed six months before being covered) or if you'reexcluded from coverage because of a "pre-existing condition"(i.e. you were diagnosed with the disease being treated beforebecoming insured by the company). Alternatively, your insurancecontract may specifically exclude coverage of BMTs.

Don't despair. For all the reasons previously stated,you may be able to enlist the help of your employer to securecoverage for all or part of your BMT bills.

Usual and Customary

Even if an insurance company pre-approves payment of BMTexpenses, it may subsequently refuse to pay parts of certainbills because the fees exceed "usual and customary" charges. TheHealth Insurance Association of America maintains a database ofcharges byphysicians for various medical procedures, sorted by zip code.The major private insurance companies will typically pay thefull cost of the procedure if it falls below the 80th or 90thpercentile of charges being levied for the procedure byphysicians in the same geographic area.

If part of a medical bill has been rejected because thecharges exceed "usual and customary" charges, bring the problemto the attention of your physician. Sometimes, imprecise billingwill cause partial denial of payment. For example, charges fortwo separate procedures may be lumped together under a singleprocedure code on the bill. When compared against the databaseof comparable charges for that procedure in your area, thecharge will appear to be unreasonable. Have your doctor check tobe sure the bill is properly itemized and the billing amount iscorrect before paying the balance due. If an error has beenmade, the bill can be resubmitted to the insurance company forpayment. Otherwise, your physician may be willing to waive orreduce the charge.

DON'T TAKE "NO" FOR AN ANSWER

It is possible to get your insurance company to pay for yourBMT, even if they initially deny your request. Often it willrequire the help of an attorney, but it can be done. Here are afew tips:

1. Don't put off meeting with the medical team at the BMTcenter simply because your insurer has refused to pay for thetransplant. Most major BMT centers are very experienced inpersuading insurers to pay for the transplant, and can help yousuccessfully appeal an insurer's denial of coverage.

2. Don't assume the insurance company has the unilateral rightto decide whether or not to cover your BMT, regardless of whatlanguage they've put in the insurance contract. Contact alawyer to determine what your legal rights really are.

3. Don't delay in seeking the help of an attorney. Often, ittakes little more than a letter from an attorney to persuade theinsurance company to "rethink" its position on the issue.Usually, these types of cases can be successfully resolved foryou by an attorney without actually going to court.

4. You don't know an attorney experienced with these kinds ofcases in your area? Call the BMT Newsletter at 708-831-1913. Wehave a list of attorneys in several states who have successfullyhandled BMT cases. Most are also willing to talk with otherattorneys who are handling these cases for the first time. Ifyou have an attorney of your own, he or she may find the listhelpful.

Going to Court

Challenging an insurance company's refusal to pay for aBMT can be difficult and time-consuming. Many BMT centers haveexperienced staff who can help you through the process.Nonetheless, you may be forced to sue your insurer forreimbursement of BMT bills.

Results of recently reported court cases involvingpatients who sued their insurer for reimbursement of BMTexpenses are encouraging. Of 15 reported cases in 1990 (mostinvolving autologous BMTs for breast cancer), preliminaryinjunctions or final decisions were issued in nine casesrequiring insurers to pay for the BMT. Four others wereresolved in the patient's favor without a trial.

The legal strategy for winning insurance reimbursementfor BMTs hinges on the specific language in the insurancecontract. If coverage is denied because the procedure is"experimental," "investigative" or "not generally accepted bythe medical community," the court will first determine whetherthe contract gives the insurer the exclusive right to interpretthat language in the contract. If it does not, the court willnot defer to the insurer's interpretation, but will itselfinterpret the contract. If the contract does confer unilateralauthority on the insurer to determine which procedures will becovered, the court will determine whether the insurer appliedits own standards in an "arbitrary and capricious" manner. Ineither case, great weight is given to testimony by medicalexperts regarding the efficacy of the BMT in treating the dis-ease, and whether or not the treatment is generally acceptedwithin the medical community.

For further information on recent lawsuits involving autologousBMTs see an article by Ted Wieseman in the May 1991 issue of"Oncology Issues" published by the Journal of the Association ofCommunity Cancer Centers.

BMT NEWSLETTER 1991 INSURANCE SURVEY

Sixty-three BMT centers from 28 states responded to theBMT Newsletter 1991 Insurance Survey. Key findings wereas follows:

• 79% of the centers require insurance pre-approval before proceeding with the BMT.

• Several state-funded hospitals perform BMTs for state residents regardless of their ability to pay.

• Some private hospitals will set up special payment plans for patients when insurance will not pay for the BMT. A few have access to pri-vate funds to help patients defray BMT bills.

• 40% reported that one or more patients at their facility did not have a BMT in the last three years as a result of an insurer's refusal to pay for the procedure.

• 74% of the centers performing autologous BMTs for breast cancer reported insurance reimbursement problems.

• 44% of the centers performing autologous BMTs for ovarian cancer reported insurance reimbursement problems.

• Few centers reported reimbursement problems for autologous BMTs to treat acute leukemia, Hodgkin's disease and non-Hodgkin's lymphomas.

• 33% of the centers performing allogeneic BMTs reported reimbursement problems. Most involved an unrelated or mis-matched donor.

• Centers reported mixed results in securing reimbursement for donor-related expenses. While more than half the centers reported some reimbursement problems, even more reported at least limited success in persuading insurance to cover these costs.

• Insurance reimbursement problems were reported with all types of insurance plans-private plans, HMOs, and government programs.

• Many centers reported success in reversing an insurer's initial denial of coverage, even for therapies considered "investigative" by insurers, after intervention by the transplant physician. An initial denial of coverage by an insurer is by no means the final word.

• 38% of the centers said at least one patient had been able to raise funds privately for the BMT after being denied insurance coverage.

• 49% reported that one or more patients had sued their insurer in the past three years for coverage of their BMT expenses.

Fifty-two-year old Gail Pitman of Tulsa, Oklahoma isrunning on borrowed time. Diagnosed with multiplemyeloma, his doctors say an autologous BMT is the onlychance to prolong his life. Blue Cross/Blue Shield hasrefused to pay for the transplant claiming it is"experimen-tal." He's written the following toencourage others not to give up when adversity strikes.

Because I Am A Runner, I Have A Chance

The doctorsaid you have multiple myeloma - CANCER. Eight yearsago I began running. I gradually built up my stamina towhere I was doing six miles several times a week.Early spring of 1990, I was looking forward to a goodrunning season. I felt good. This would be a goodyear. It started gradually, the loss of stamina, thepain in my lower back. After years of running, I was intune with my body. I knew my body was trying to tell me something.

After numerous blood tests, the diagnosis was confirmed-multiple myeloma, an almost always fatal form of cancerthat attacks the bone marrow. The doctor said I had only 27months to live.

However, because of my running, my body was in topcondition. I felt I had the strength to fight if I could findmedical assistance. I found an oncologist who agreed that mybody was younger than my chronological age and that I was ingood physical shape. He agreed to proceed with testing andtreatment. There is no question in my mind that had I not been arunner, I would not have detected the signs as early and I wouldnot have been in good enough shape to undergo treatments.

For over 15 months I have had monthly chemotherapy andfor many months shots of interferon to stimulate my immunesystem. No one can describe having chemotherapy to anyone elseunless they have been through it.

For a while I couldn't run, couldn't even walk far. Butrunning is such a part of me that I had to keep going to theriver and hitting the path. Gradually, walking became jogging,jogging became running. I had missed the 1990 Tulsa Run, butwith a good friend by my side I finished the 1991 Tulsa Run.

I may never get back to where I was before the cancerstruck. But I hope to continue running and participating in myfavorite races.

We're still fighting. The treatment has always beenaimed at getting me to the point where a BMT could be performed.We have now reached this point. The only thing standing in theway is an insurance company that refuses to pay for thetreatment. The past months have shown me that a good positivemental attitude, strong support from my friends, and acontinuous effort to run have been as important to me as all themedical treatments I have been given.

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