by Tara Wood

When you set off down the road of health insurance coverage, you may quickly find yourself lost in a dark and frightening maze. There may be as many questions about health insurance as there are people seeking the answers, but they all really boil down to one: How can I get my insurance provider to cover the ongoing and unexpected medical expenses related to having a neuromuscular disease, so that I can function as well as possible?

This article explores a few basic insurance questions, in the hope of helping to light your way. See "Money Trail Resources" for more information on the programs mentioned here.

Private Insurance

In dealing with my many medical expenses, Ive been told I shouldnt take "no" for an answer when my private insurance [or HMO] denies what seems like a reasonable claim. But where and how should I begin to appeal a decision? Is there any way to make this process easier?

When Kristine Biagiotti saw how taking the natural supplement coenzyme Q10 greatly benefited her daughters overall health, and learned that her insurance wouldnt cover it, she knew she had a fight worth fighting.

Biagiottis 8-year-old daughter Kayla, who has mitochondrial encephalomyopathy, has taken coQ10 for five years. CoQ10 sometimes provides an energy boost to people with certain muscle diseases.

Kristine and Kayla Biagiotti

"Without coQ10, Kayla is always tired and unable to do much of anything," said Biagiotti, who lives in Franklin, Mass. But when she takes the over-the-counter supplement, "she is able to do more in school, crawl and do typical kid activities because she has the energy."

Unfortunately, because coQ10 is considered a supplement and doesnt always require a prescription, it isnt a typical drug in the eyes of insurance companies.

"It can be very expensive, depending on the dose a person needs. [The cost] makes it very easy for the insurance company to deny it," said Biagiotti, who estimated that coQ10 cost at least $150 a month when her daughter required small doses. Now she needs a liquid compound to go into her feeding tube, which the family expects will cost as much as 40 percent more.

Three years ago, Biagiotti got a "benefit exception" to have coQ10 covered under her primary insurance, Harvard Pilgrim Health Care.

Then, in December, she appealed and won a decision against Kaylas secondary insurance carrier, MassHealth, the state health care plan that provides coverage for people with disabilities. Although MassHealth had previously paid for Kaylas coQ10, it discovered that it was doing so by mistake and denied coverage.

Biagiottis efforts combined plenty of research, phone calls, and ultimately wearing down the companys representatives during an appeal hearing, she said.

But the payoff was well worth it. Not only is coQ10 covered for Kayla, but Harvard Pilgrim Health Care has now made it a covered benefit for people who have a metabolic or mitochondrial dysfunction and need coQ10 via prescription.

While the Biagiottis experience was by no means easy, it illustrates that consumers shouldnt be afraid to appeal an insurance companys decision.

But how?

Doctors Can Help

Start with your doctor, says Jacques Chambers, a Los Angeles benefits counselor who has 25 years experience in the insurance industry and 10 managing the disability benefits program for a large nonprofit organization. He has Charcot-Marie-Tooth disease.

	Jacques Chambers

A doctor or a member of his or her staff who has experience with your medical insurance plan should be able to help you sort through the reasons why a claim was denied, and help you chart a path to approval.

Read the Plan

Often, clues to a successful appeal can be found in the Summary of Benefits some insurance companies issue.

"That sheet will start the process of explaining why they only paid what they paid," Chambers said. The summary should list a toll-free number to call to find a representative to "walk you through" the information.

You should also read your insurance plan or Summary Plan Description. The latter shouldnt be confused with a one- or two-page summary of the plan that an employer might put together.

"Theyre not fun to read," Chambers said of the plans, but "if you dont have that book, get it."

The Summary Plan Description should describe the insurance companys appeal process, information your doctors office should be able to help decipher.

Understanding the policies of your plan before you file a claim, such as what labs or durable medical equipment dealers the insurer requires you to use, can save you the headache of denials later on.

Sometimes, you can request a case manager to help you, or one may even be assigned for especially complicated medical issues.

Although Chambers cautions that part of a case managers job is to keep company costs down, he or she may help you understand company policies. A case manager can also be a primary contact for you and your doctors.

"Learn the process, and find out who will help you," Chambers said, including nonprofit groups such as legal organizations, Medicare or insurance rights groups, or even your states Department of Insurance. (See "Money Trail Resources.")

Medicaid

I keep hearing in the news about states funding for Medicaid being drastically cut. What can I do to ensure that my coverage will be continued?

Tight economies often bring budget cuts, and because Medicaid — a federal/state health insurance program for certain low-income people — is costly, its often a target.

But, even though Medicaid varies from state to state, Chambers says, "keep in mind that the federal government mandates that the states cover certain items under Medicaid."

Legally protected services include inpatient hospital care, laboratory tests and X-rays. Certain categories of people are also guaranteed coverage; those who receive Supplemental Security Income are often given Medicaid coverage with it.

Thats the good news.

The bad: States can cut Medicaid in areas where they have leeway, such as prescription benefits, dental plans and optical services. States may also narrow the eligibility requirements for Medicaid in order to reduce expenses.

Whats the best way to protect yourself? Get armed with information and stay current on your states Medicaid efforts. You can do this by getting involved with advocacy networks or social service organizations, Chambers said.

Such organizations, including MDA, might also know of programs that could assist outside normal Medicaid coverage.

For example, Medicaids Health Insurance Premium Payment program, or HIPP, assists those with a family member who qualifies for Medicaid but who also have access to private health insurance. In some instances, HIPP may pay the private insurance premiums when doing so is found to be cost-effective. It may even cover conversion policies or COBRA extensions (see below).

"[States] would much rather pay the premium and let the insurance company foot the big medical bills, than let Medicaid pay it. Its just a smart move — and the federal government is in favor of it," Chambers said.

Chambers strongly advises that you make the effort to find out exactly what you qualify for in any benefit program, and not rely on what other people say.

COBRA

Im interested in switching careers, but am afraid to lose my current insurance because I have [or my child has] a progressive neuromuscular disease. What exactly is COBRA insurance, and how will that help me? Why is it so expensive, and do I have any other options?

Simply put, COBRA — the Consolidated Budget Reconciliation Act of 1986 — lets you extend your insurance coverage if you leave a job or group that made you eligible for the coverage. For many people, that happens because of a layoff, termination, job change or when the level of disability makes working inadvisable.

No doubt about it — COBRA is expensive: When you opt to extend your insurance via COBRA, you must pay the total price of the insurance premium (most of which your employer had previously paid), plus an administrative fee. The new premium can cost as much as three or four times what you were paying when employed.

So why buy it?

COBRA ensures continuous coverage, which means continuous care under your current doctors. Plus, the higher premiums still probably are less than the medical bills for an emergency or sometimes even for ongoing costs of treating a chronic disease.

"You need to be insured, the way our health care system is set up," Chambers said. "Studies generally show that if you dont have insurance, you dont do as well medically."

Chambers points out several COBRA intricacies.

For one thing, not all employers are covered under COBRA. For example, employers with fewer than 20 employees and religious institutions (including church-affiliated hospitals) arent required to participate in COBRA.

In order to stay competitive in the job market, many exempted employers offer a COBRA equivalent, Chambers said, and many states have mini-COBRA laws that cover small employers.

If you leave a job, voluntarily or not, by law an employer must notify you of your rights under COBRA. But you should do your own research on your rights and, above all, ask questions, Chambers said.

60 — the Magic Number

After a change in employment status, you have 60 days to elect COBRA. Initially it will allow you to continue your coverage for up to 18 months, at your expense.

Having a disability, however, can allow you to continue COBRA coverage for 29 months, but certain steps must be taken.

First, you need to apply for Social Security Disability Insurance and be approved within your first 18 months of COBRA coverage. Social Security has to agree that you (or your dependent) were disabled when you left work, or within 60 days of your departure.

The most important step comes after youre approved for SSDI.

"You have to notify your COBRA administrator of your Social Security award within 60 days of getting it," Chambers said.

People often think they can wait and apply for a COBRA extension when the coverage is almost up. But, "If you dont notify them [COBRA] within 60 days of getting your Social Security award, they dont have to extend your COBRA."

Hippos and Snakes

Getting insurance to cover pre-existing conditions is another hurdle many face when changing jobs. However, legislation enacted in 1996 has made that less of a problem. The Health Insurance Portability and Accountability Act (HIPAA, or the Kassebaum/Kennedy Health Care Reform Act) is designed to make health insurance coverage "portable."

HIPAA makes it easier to change jobs without losing group health insurance coverage, prohibits or limits exclusions of people with pre-existing medical conditions, and gives you options to obtain individual health coverage if youve lost group coverage.

For example, HIPAA allows many group health plans to carry an exclusion period of one year for a pre-existing condition, such as a neuromuscular disease. That means, if you get a new job with a new insurance plan, you must wait a year before anything related to the condition will be covered.

Thats when HIPAA and COBRA work together: COBRA can be used to cover the pre-existing condition until the exclusion period has been met.

HIPAA also permits you to earn "credit" to apply toward an exclusion period for the amount of time you were covered by a comprehensive major medical health care plan. The catch: You cant have a break in coverage longer than 62 days.

HIPAA also allows for the purchase of Guaranteed Individual Coverage by people who fit several requirements, such as no longer being eligible for group coverage, Medicare or Medicaid, and having exhausted COBRA coverage.

Find out more about options like COBRA and HIPAA programs through your insurance provider, your employer or the Department of Labor Web site.

Medicare

I have a claim for a piece of medical equipment my doctor prescribed, but Medicare is denying my claim. What can I do? Is it worth the effort to appeal?

From wheelchairs to augmentative alternative communication devices, the road to reimbursement isnt always a smooth one. Should Medicare recipients go to the trouble of appealing a denial?

"Absolutely," Chambers said.

In fact, according to the Centers for Medicare and Medicaid Services, 64 percent of Part B appeals reviewed by Medicare carriers were decided in favor of the appellant in 2002. Part B of Medicare generally covers medical expenses outside of hospital care.

For help with a Medicare appeal, start with your doctors office.

"Experience counts here. The more a doctor works with a particular plan, the easier its going to be," said Chambers, who also recommended enlisting the help of advocacy organizations, such as the Medicare Rights Center.

Keep in mind that no matter how clear you think your need for a piece of equipment (or a treatment) is, having your doctor say you need it doesnt always fit Medicares definition of "medical necessity."

The definition is open to interpretation, Chambers said. "Remember, Medicare farms out the actual claims processing to different entities around the country. Its how they interpret it."

DME Dealers Know Their Stuff

He also recommends testing the reimbursement waters with a Medicare Advanced Beneficiary Notice. This allows you to submit an advance claim for an item youll need in the future to see if itll be covered. A doctor or a durable medical equipment (DME) dealer can assist with this.

And speaking of DME dealers, they, too, can help take the guessing out of the approval process. Some companies even have an insurance department to assist customers with the process.

Electric Mobility, a wheelchair and scooter manufacturer based in Sewell, N.J., is one example.

Michael Johns, Electric Mobilitys director of insurance, said his company boasts an "incredible success rate" with Medicare for coverage of its products because "we work very diligently to understand the federal eligibility guidelines and we do not take Medicare assignment [the full payment allowed by Medicare] unless the customer clearly meets these eligibility guidelines.

"The most important thing is to communicate with your physician about your mobility needs and challenges, and speak directly to our insurance experts, who can provide very competent guidance," Johns said.

One more helpful hint, courtesy of the Medicare Rights Center: Know the difference between a dealer who accepts Medicare, and one who accepts Medicare assignment.

Unlike doctors, if a DME supplier accepts Medicare but doesnt take Medicares assignment, it can charge you any amount to make up the difference. That means youll be responsible for paying the 20 percent coinsurance plus whatever else the supplier wants to charge.

Social Security Disability Insurance

Ive worked hard all my life, but in a family business where technically I didnt earn a paycheck or pay into Social Security. In addition, my progressive neuromuscular disease makes me "uninsurable," and I need help to cover my medical bills. What can I do?

People with unusual work histories should explore options through Social Security such as whether a spouse or child is eligible for benefits. For family operations such as farms, you first need to find out if someone in the family has been paying into Social Security.

"Its not just the worker that can benefit from his or her account," Chambers said.

He emphasized the importance of working "on the record," and planning ahead when possible if you have a medical condition that will likely limit your ability to work in the future.

Mick Mickler

Anyone applying for Social Security benefits should enlist solid cooperation from his or her doctor, said Mick Mickler, president and founder of Disability Advocates of America, based in Cedar Creek, Texas.

"The process is so difficult to go through for most people that they dont understand everything they need to do to show the extent of their disabilities," said Mickler, who has Duchenne muscular dystrophy.

Steer the Decision

Mickler knows firsthand how often SSDI and SSI claims are denied: Before starting his business, he worked for a decade in Texas rehabilitation commission, for four of these years as a disability examiner.

The disability examiner makes the decision, after reviewing the applicants medical history, work history and family income information.

Mickler said he denied 72 percent of the applications he reviewed, but now has an even higher success rate of securing the same benefits for his customers nationwide.

"Its not that theyre trying to deny claims. The lawmakers set the regulations, which are very strict and are intended for the most severely disabled people in America, and thats why so many people are denied," Mickler said.

Mickler recommends taking several steps to carefully and scientifically document your disability before you even apply.

Make regular visits to your doctor, communicate clearly about problems youre having, and be sure your doctor documents what you say.

Then, ask your doctor to perform tests to demonstrate your claim, such as muscle biopsies or other diagnostic tests, and functional tests like range-of-motion, strength and pulmonary tests.

"They [disability examiners] need to have this. Regardless of what a doctors opinion is about whether or not you can work, it must be supported by objective medical evidence," Mickler said.

At the same time, theres plenty of opportunity in the SSDI process to miss information, such as if the doctors records are incomplete or illegible, or the physician refuses to respond to a request for information.

Mickler said he was required to intake three cases a day and determine three cases a day, so he didnt have a lot of time to wait or hunt for extra information he sometimes needed.

"I dont want people to think the examiners are turning down cases because its personal. Its not personal — theres no place in the system for personal opinions," he said. "But if (applicants) prepare themselves before they apply, they can enormously increase their chances of being approved at the first level."