Is managed care an effective form of health insurance for people with neuromuscular diseases, or is it all bad news?

People with chronic health conditions such as neuromuscular diseases have found managed care a pretty unmanageable health-care system. Managed care is rapidly becoming the country's most common form of health insurance, but for many families served by MDA it's added massive headaches to their health-care complaints.

As the Robert Wood Johnson Foundation writes in "Chronic Care in America," published in August 1996, "From the chronic care perspective, key elements of our current 'system' of care — its priorities, allocation of resources, training of professionals, and the incentives inherent in its financing — appear out of kilter and sometimes simply dysfunctional."

Based on interviews with people served by MDA and numerous surveys of people with chronic diseases, it seems clear that managed care, as currently practiced, is not what the doctor ordered for people with progressive, incurable diseases. The kind of specialist supervision and frequent services that neuromuscular disease patients need don't fit the commitment to cost efficiency that's at the basis of managed care.

Managed care is a broad term for a system in which enrollees, or members, pay a set fee into a health plan and then receive health care from a network of specified providers and services. HMOs (health maintenance organizations) and other managed care organizations keep costs down by such means as limiting referrals to specialists and tests, and by paying primary care physicians a set amount per patient, no matter how often the doctor sees the patient (capitation). Each HMO member is assigned a primary care physician (also called a gatekeeper), who provides routine health care and must authorize all other health-care services for the patient, including referrals to specialists.

(Note: This article uses the terms managed care and HMO interchangeably. Although there are other types of managed care organizations, HMOs are the most typical. For details about managed care, and how it differs from traditional insurance plans, see Resources.)

One major difference between managed care and traditional (fee-for-service, or indemnity) insurance is that, under the latter, doctors' decisions have authority. In managed care, policy setters and executives frequently override recommendations made by the doctors they contract with, not to mention requests by patients.

Glen Gallivan, 24, has been hospitalized 25 times, primarily for respiratory problems connected with his spinal muscular atrophy. When his family had traditional insurance, "His doctors were able to direct his care in the manner they saw fit, with no intrusions," his mother, Pat Hackett-Waters of Gainesville, Fla., said.

He's now covered by managed care. This January, when he was hospitalized for 11 days, she said, "The physician received five phone calls from the insurance company, the hospital received four phone calls, and Glen received two certified letters indicating whether or not he could remain in the hospital."

Hackett-Waters added, "We've gone from physician and patient choice into cost containment by an external force that may not be medically directed. Those are huge changes and they're making people angry."

What makes people with neuromuscular diseases angry about managed care? First, it's nearly impossible to get private health insurance if you have a chronic condition. But even those who are insured through employee benefits packages (their own or a spouse's or parent's) often can't get what they consider fair coverage. Typical problems include: inability to choose doctors; severe limits on physical therapy coverage; and caps on durable medical equipment coverage.

Choice of Doctors

Ben Mathews of Metairie, La., worked for a company that changed HMOs in 1997. Mathews, who has limb-girdle muscular dystrophy, needs close monitoring of his respiratory health, following a bout of pneumonia in early 1996 that led to use of a ventilator.

Though both HMOs' policies are almost the same, their treatment of him has been "exactly the opposite," Mathews said. For one thing, he can no longer see the doctor of his choice, although seeing the right doctor is crucial for him.

"The average doctor treats my situation kind of like someone with a chronic lung disease, which I don't have," Mathews explained.

When Mathews contracted pneumonia, MDA helped him find a pulmonologist at Louisiana State University Medical Center who understood that his lung problems were caused by muscle weakness. Even though the specialist wasn't in the first HMO's network, the plan "made some sort of arrangements with LSU to allow me to continue to go with him. They were extremely accommodating. They understood my situation and just kind of adapted to it. I was thrilled with them."

By contrast, "The new HMO doesn't even want to discuss it," Mathews said. "I basically have to fund it myself if I go to the same doctor. And I've got to go to the same doctor because he really has been wonderful to me."

Mathews went through the HMO's appeals procedure, writing a detailed letter explaining why he needed to see the specialist.

"They didn't even respond to it," he said. "Finally when I called them, I got a response over the phone, which was no. I never did get a written response even though they're supposed to send one."

Physical Therapy

Caps on physical therapy sessions are one of the most frequent complaints of neuromuscular disease patients covered by managed care. Most HMOs view physical therapy as appropriate only for people recovering from surgery or injury. For the most part, they either refuse to pay for physical therapy in neuromuscular disease at all, or they require a patient to go through the approval process repeatedly, getting a new written recommendation from the primary care doctor every few weeks.

Loretta Pelligrino of Tewksbury, Mass., is the office manager at a private physical therapy clinic. "By and large the HMOs cover physical therapy but not maintenance-type physical therapy. It's all acute care, two months' limit, and that's it," said Pelligrino, whose 13-year-old son Matthew has central core myopathy. "They do not want to cover anything that's considered maintenance therapy like keeping your contractures stretched."

To get managed care organizations to cover the services offered at her business, the agency must write up a treatment plan. "They'll approve a set number of visits. Usually it's not that many, it might be a maximum of 12 in a month, three times a week. After that 12 visits, you've got to justify why you want more if they need it. You have to fax them another treatment plan."

She added, "The paperwork associated with managed care is unbelievable."

Eric and Kim Livingston of Atlanta ran into the physical therapy obstacle in 1995 when he was found to have amyotrophic lateral sclerosis. Mrs. Livingston recalled, "Physical therapy was denied him because they said it wasn't beneficial. He would get no positive result from it. However, they failed to recognize that by doing PT you're preventing falls, you're preventing stress fractures, you're preventing pneumonia. He's going to be more mobile."

Mrs. Livingston, a registered nurse, added, "Also it's palliative. It reduces pain in MD and ALS patients. You're not going to be using expensive drugs."

Nonetheless, an insurance company case manager told her, "He's going to die anyway, and physical therapy is not going to save his life."

The company relented only after receiving a detailed letter from Eric Livingston, who was a doctor. He referred to the HMO policy's definition of "medical necessity" and explained that his neurologists did include physical therapy under that definition.

"We got PT," said Mrs. Livingston. "That was our outcome. But it took a lot of fighting, fighting all the time." Her husband died in July, 16 months after his diagnosis.

"I think what irritated him the most is that, even though your physician orders it, your insurance doesn't have to pay for it," she said. "This is medical care that's being ordered by a licensed professional who specializes in the field of neurology and your insurance company says no."

Durable Medical Equipment

Provision of durable medical equipment is another problem area in managed care. Pelligrino's HMO has a $1,500 cap on equipment.

"Two leg braces are around $5,000," she points out. "$1,500 is eaten up very quickly."

Mathews, 52, had to buy his own ventilator at about $10,000 because the cost exceeded his policy's DME limit. The HMO also considers his ventilator supplies to be durable equipment and won't pay for them.

"I don't see why, because they're not durable. They're almost like prescription stuff," he said. "The inner cannulas (part of the tracheostomy tube) that I'm supposed to use once a day cost around $6 apiece. The suction catheters, when I have to buy them myself, cost $5. Come to find out, the insurance company's paying $1 for them. I used to buy three a day, so for the insurance company that's $3 a day; for me it's $15 a day. The bacteria filters for the ventilator run $10 a week."

For Mathews to change his supplies at the recommended frequency would cost him well over $600 a month out of pocket. He can't afford that, so "instead of changing inner cannulas every day as I should, I'm now changing once a week. And bacteria filters I almost never change because they're so expensive. On the MDA Forum (on CompuServe) I found some information on a machine that kind of helps eliminate having to suction. Yet my insurance company doesn't pay for that either."

Increased Risks

These examples point up the fundamental flaw in managed care coverage for people with neuromuscular diseases: Managed care isn't geared to help enrollees maintain their health status or have optimal quality of life. Yet by failing to support these services, HMOs often put patients' health at risk, leading to more complicated — and more expensive — care.

By not properly maintaining his ventilator and not seeing the best doctor for his condition, Mathews runs the risk of getting an infection or further weakening his respiratory system. The result could be hospitalization — a much more expensive proposition for the insurance company.

However, some managed care plans are more accommodating than others. In a survey conducted by the Baylor College of Medicine Department of Physical Medicine and Rehabilitation, several people with disabilities said their managed care insurance had completely covered expensive equipment.

In addition to difficulty getting referrals to specialists and extended physical therapy, the people interviewed by postdoctoral fellow Ellen Grabois for the Baylor study cited delays in getting answers or appointments, and the inaccessibility of examination equipment in the doctors' offices as major problems with managed care. Because the facilities weren't accessible, "They felt they didn't get a thorough exam for general health problems," Grabois said.

Lifetime caps on benefits, limited access to new or brand name drugs, and failure to cover home health care (while nursing home care often is covered) are other concerns.

What's a Patient to Do?

How can you get your managed care plan to provide reasonable coverage to keep you as healthy as possible with a neuromuscular disease?

Grabois found that the people with disabilities who got the best results from managed care plans were those who said, "I'm an advocate for myself. I know my condition. I do research. I find out what the best treatment is, and I go in there and I tell the doctor what I need."

She added, "They don't let the doctor forget who they are. They try to establish some sort of personal relationship with the doctor, and they try to communicate with the physician."

Know Your Diseases

To communicate with your primary care physician, you have to do your homework and speak the language. You must know your disease, know your body and be alert to its changes, know how each form of treatment works and what it's for, and know the results of tests you've had. In other words, you should know how your disease affects you personally and be able to express the information in medical terms.

You can educate yourself at your MDA clinic and through MDA publications. Read; talk with others with similar conditions; observe your body; and document the effects of various therapies, drugs or muscular declines.

Armed with thorough knowledge, you can educate your HMO. In a helpful way, offer to share with your primary care physician or specialist MDA brochures and Quest articles, journal articles or other information that relates to a service you need. Do it in a way that doesn't offend your doctor or accuse him of ignorance.

Know Your Policy

You also must know your insurance policy. Several organizations listed in Resources have prepared extensive lists of suggestions and questions to review about your policy. By knowing the limits of coverage and understanding the terms used in your policy, you can speak with the company in its own language. You can be sure you're getting everything you've paid for, and you can often persuade the company to go beyond the things spelled out in the policy.

Judy Chamberlain, reimbursement supervisor at Olsten Health Services in Fort Worth, Texas, said people should know at least the basics about their insurance coverage: deductibles, copays, yearly out-of-pocket and lifetime maximums, and billing codes. These codes, standardized by the American Medical Association, are used to describe procedures, treatments and diagnoses; for a book that lists the codes, see Resources. Knowing the codes can help you be sure paperwork is accurate and can sometimes help in appealing a denied claim.

If you've only been given a skimpy plan summary, you can ask for a more detailed contract. If there are terms or clauses in your policy that you don't understand, call the insurance company and ask for an explanation.

Find A Friend

Besides covering what's spelled out in the policy, HMOs often will cover more, said Brian Jolles, an independent insurance agent in Baltimore.

"The insurance company will pay the claim according to the contract," Jolles said. "And based on circumstances, if presented properly showing that there will be positive outcomes from pursuing a certain course of treatment, they will generally increase the level of coverage that the contract allows for."

A phone call about coverage of a certain service is usually answered by a customer service clerk reading a code on a computer screen, who will often say no. Decisions to extend coverage are made at a higher level, on a case by case basis.

In seeking coverage of specialized treatment for his son, who has a chronic medical condition unrelated to neuromuscular disease, Jolles said, "After we did some research and called some doctors and got some medical records to them, we went back and forth with case management. They approved a quarter million dollars worth of claims, almost entirely out of the HMO network. We've done it for other clients, too, and what I've found is most insurance companies do have a conscience."

Hackett-Waters agreed. "A lot of our kids have to have customized, not run of the mill, package deals. But many times insurance companies, even though it's not in their benefits package, are willing to take a look at exceptional medical needs, based on medical justification," she said.

Jolles said the consumer's positive attitude is all-important in negotiating for additional coverage. "You have to have a game plan and believe that you're going to get help and then get people involved to help you," Jolles said.

Getting an HMO to cover a service that won't lead to "improvement" in the medical condition is perhaps the hardest challenge a consumer faces. You must persuade the insurer that there are benefits to regular therapy, frequent monitoring by a particular specialist or top-of-the-line equipment for neuromuscular diseases: prolonged strength, relief of pain and discomfort, postponing surgery or minimizing hospitalization. Though these won't cure or reverse your condition, they will ultimately save the insurance company money.

Speak with a case manager or someone at a high level in customer service. Tell this person what your condition, or your child's, is, and explain that you recognize that the basic benefits of your plan don't provide for the types of additional services you need. Then ask if your case can be considered as one with "special circumstances."

Special circumstances status doesn't automatically open all doors and provide everything you need. But it does give you a basis for negotiating for better coverage. For example, an insurer might allow a special circumstance "where a primary physician could give a longer-term referral to a specialist, maybe for six months as opposed to a month or one or two visits," Jolles said.

An important key to making this approach work is identifying a strong advocate who's willing to act in your behalf. This could be the benefits manager at your place of employment, the insurance agent, the nurse in your primary care physician's or specialist's office, or the physical therapy or home health-care agency you deal with.

Hackett-Waters said, "It's just finding a person who is willing to listen but making sure that families don't tell stories." By that she means you should give information succinctly, making it clear that you understand the company's need for cost efficiency but you also expect the company to understand your, or your child's, medical condition.

Your best advocate will often be either your primary care physician or the HMO's case manager, the person who's supposed to coordinate all your care, referrals and consultations. Sometimes you'll need help from several advocates.

You may find your case manager or primary care physician, rather than being your advocate, seems committed to keeping you from seeing a specialist or getting further services. Managed care subjects physicians and company employees to tremendous pressures to save costs. If you run into that type of doctor, you're entitled to change primaries. If your doctor isn't interested in learning about your disease or answering your questions, get a new one.

But most doctors truly want to help their patients. Many doctors aren't happy with the way managed care officials override their medical decisions. They're also legally liable if their denial of treatment leads to a disaster. Very often, by communicating your faith in your primary care doctor, you can make him your ally.

One role of a primary care doctor is to write letters of medical necessity. If the doctor understands that extended physical therapy or a particular wheelchair is better for you, even if it's not covered in your HMO contract, he can write a letter explaining why it's medically necessary. At some HMOs, this letter will be enough to get coverage. Letters from out-of-plan doctors, including MDA clinic directors, sometimes have clout as well.

You can also change case managers if you're assigned one who's a poor advocate. Make sure your case manager understands your diagnosis and the treatment it requires. Then, when you need a service, the case manager is more likely to approve coverage quickly and with a minimum of red tape.

A case manager's approval of an out-of-plan service is called preauthorization. Grabois found that the people in her survey who got the best coverage sought preauthorization, sometimes months before a service was needed.

Chamberlain warned that preauthorization can be overturned by the HMO's medical director. In some cases, you may want to get a predetermination, a written approval directly from the medical director, she said. Predetermination should include a fee schedule and billing codes. The process can take a couple of weeks and may require you to provide extensive documentation, including letters of medical necessity. If predetermination is denied, you can begin the appeal process.

Keep Appealing

Managed care organizations have processes, spelled out in the policy, by which consumers can appeal denied claims. Your first one or two appeals may simply lead to repeated denials, but don't give up. Keep careful records of every phone call, meeting or conversation you have, including the name of the person you talked to, date, time and outcome.

Pelligrino noted, "Most people will say, "Oh, my insurance won't pay for it. I can't have it. That's the end of it." They don't know there are appeals processes."

Effective letters are important. If you're asked to write a letter, include such information as: positive effects of the service, clinically measured; negative results if you don't receive the service, including such effects as being unable to work; the risk of needing more complicated, costly treatment such as surgery. Back this up with letters from your doctors, including the MDA clinic director; material about your disease from MDA; abstracts of relevant journal articles; and photographs.

Send copies of your letters to anyone who might have influence: your MDA clinic director, congressional representatives, your company's benefits manager. One father of a boy with Duchenne muscular dystrophy got a positive result when he sent his letter to the president of the HMO.

Your letter can appeal emotionally by pointing out the personal impact of the HMO's decision, but it should also stick to the facts. Insurance companies unfamiliar with your condition might change a ruling simply because of information you provide. Above all, emphasize the long-term benefits not only on your health but on saving the company money. Describe the service you're requesting as "preventive" or "primary care," the emphasis that has enabled managed care to cut health-care costs.

The last portion of your letter, Chamberlain said, should tell what you'll do if your claim is denied. By saying that you'll appeal to the state insurance commission, you let the insurance company know you're informed about your rights.

If letters to the medical director don't do the trick, you can ask for a hearing before a review board made up of medical providers knowledgeable about your condition. Bring your documentation and be prepared to explain why the service should be covered. You may bring others to speak for you, including legal representation. Stay calm but firm.

Also, be prepared to break the service down into components. The company may be willing to negotiate and give you partial coverage — say for six months of physical therapy, or a higher cap on your DME coverage.

If you're denied by the review board, and you and your physician are convinced the service should be covered, or if the insurance company hasn't followed correct procedures, you can appeal to your state's insurance commissioner or insurance board. Beyond that, if malpractice is involved, consider going to the county or state medical board or filing a lawsuit. Managed care companies have been involved in several high-profile cases in which their delays of treatment and testing led to wrong diagnoses or missed treatment opportunities, with tragic results.

Reach For Your Checkbook

Of course, there's nothing to stop you from paying for any health-care service yourself — except the limits of your own pocketbook. Some families take personal loans or second mortgages to pay for services their insurance won't cover.

Modern high-tech health care is very expensive. Many consumers believe that if insurance companies did cover everything patients requested, they'd have to raise their rates an unreasonable amount. In going to battle with your HMO, be sure that the coverage you ask for is within the realm of reason.

As a nurse, Kim Livingston knew her HMO couldn't be expected to pay for every expense related to her husband's ALS. "I would never expect the insurance company to buy his AFOs (ankle-foot orthoses) every month," she said. "I think to ask them to give me money to remodel my house is excess."

She added, "You need to make some compromises. You've paid into it but really there's only so much money. What is reasonable and what isn't reasonable needs to be taken on a case by case basis. If you're prudent with health-care dollars, services that you feel are important should not be denied." She and her husband thought their insurance should cover physical therapy and nursing assistance two hours a day.

Hackett-Waters, who's part of a grassroots effort to make managed care more responsive to families of children with special needs, said the managed care industry's emphasis on preventive care can be a good lesson for people with neuromuscular diseases.

"We tend to always think about disease management. It takes a while to learn how to get into wellness mode," she said. "We're diligent about getting that kid to the hospital, but we have not backed up to do the training on how to avoid going to the hospital. I think some of the constraints managed care has given us are now making us a little smarter. We've got to keep these kids healthier! That's a good tradeoff."

One compromise her son has made is use of massage therapy instead of more expensive physical and occupational therapy. By networking through MDA support groups and other organizations, you can find other suggestions for alternative treatments.

Get More or Different Insurance

People with chronic illnesses sometimes can influence the health plans their employers purchase or the coverage in the plan. You can ask to have input into your company's choice of health plans. If more than one person with a disability or chronic illness is on your plan, there's strength in numbers.

Employees are asked once a year if they want to renew their insurance coverage. Several organizations listed in Resources suggest questions to ask when you review your coverage, especially if you have a choice of more than one plan.

"You have to look at: What is it that you really need, what is it you're willing to pay out of pocket in case it's not covered, and what would cause bankruptcy in your family if by chance that particular year you have some catastrophic stuff going on?" Hackett-Waters said.

Many people with chronic diseases choose to supplement their managed care plans with additional insurance, including an individually purchased indemnity plan, a high-risk pool, Medicare or a state program that covers health care for children with disabilities. Many of these plans have elements of managed care, but in most cases a second plan will cover some of the expenses not covered by the first.

Future articles in Quest will look at state-by-state efforts to improve managed care coverage for people with chronic illnesses, and how recent and proposed federal legislation may help solve some of your health insurance dilemmas.

RESOURCES

Organizations

American Association of People With Disabilities, 1819 H St. NW, Suite 330, Washington, DC 20006; (800) 840-8844; www.aapd.com. Offers discounted health insurance plans for members.

Center for Children With Chronic Illness and Disability, P.O. Box 721, 420 Delaware St. SE, Minneapolis, MN 55455; (612) 626-2134; www.peds.umn.edu. This rehabilitation, research and training center is conducting studies on managed care and children with chronic illnesses and disabilities.

Consortium for Citizens With Disabilities Health Task Force, (202) 898-0414; www.aamr.org. Publishes "Principles for Managed Care for People with Disabilities."

Empower! The Managed Care Patient Advocate. www.comed.com/empower. Not geared to chronic disorders, but a helpful Web site for people insured by managed care.

Family Voices, P.O. Box 769, Algodones, NM 87001; (505) 867-2368; famv01rw@wonder.em.cdc.gov; www.ichp.edu/MCH-NetLink/FamilyVoices/. A national grassroots network of families of children with special health care needs, with coordinators in every state. Offers a newsletter and extensive information on managed care, on which it's conducting a national survey. Publishes "Children with Special Health Care Needs in Managed Care: Questions to Ask and Answer," a detailed list of questions to consider in choosing a health plan; available on the Web site or by mail.

Institute for Family-Centered Care, 7900 Wisconsin Ave., Suite 405, Bethesda, MD 20814; (301) 652-0281. Inquire about newsletter, "Advances," and other publications.

National Coalition for Family Leadership, publishes "The ABCs of Managed Care Standards and Criteria for Children With Special Health Care Needs," an analysis of what managed care plans should provide. Available at www.ichp.ufl.edu or by calling state coordinator of Family Voices.

National Committee for Quality Assurance, 2000 L St. NW, Suite 500, Washington, DC 20036; (800) 839-6487; www.ncqa.org. An independent organization that assesses, accredits and reports on quality of managed care plans. Publishes HEDIS and report cards on individual plans.

Robert Wood Johnson Foundation, P.O. Box 2316, Princeton, NJ 08543-2316; www.rwjf.org. The country's largest foundation devoted to health care. The foundation has granted several million dollars to studies of chronic care and HMOs. It expects to publish a book-length report on its findings by the end of the year.

Publications

"A Guide to Managed Care for People With Spinal Cord Injury or Disease," a pamphlet with much information applicable to neuromuscular disease. Available free from Paralyzed Veterans of America, (888) 860-7244.

"ALS — A Guide for Patients," by D. Eric Livingston, M.D. The late Dr. Livingston drew up this helpful patient's guide, which covers many topics, including dealing with insurance companies. Available online on the MDA CompuServe Forum.

CPT 1997 - Standard Edition (Current Procedural Terminology) This book contains billing codes made standard by the American Medical Association. Available at medical bookstores and libraries. Or order from the AMA Physician Catalog, P.O. Box 7046, Dover, DE 19903-7046; (800) 621-8335; www.ama-assn.org. $47.95.

Health Against Wealth: HMOs and the Breakdown of Medical Trust, by George Anders, $22.95, Houghton Mifflin, 1996. Written by a Wall Street Journal reporter, this book is said to examine abuses of the managed care system that have been harmful to consumers. It examines political manipulation by HMO lobbyists and proposes corrective measures.

"Health Insurance: How to Get It, Keep It, or Improve What You've Got," second ed., 1996 by Robert Enteen, Ph.D. $24.95 plus $4 P&H. Demos Vermande, 386 Park Ave. S., Suite 201, New York, NY 10016; (800) 532-8663. This book is a thorough reference source on all aspects of dealing with health insurance. In language geared to consumers, it describes each type of insurance, with pros and cons, including private and government plans, high-risk pools and long-term care insurance, as well as indemnity and managed care. Helpful sections address sources of help with insurance problems and maximizing claims. One appendix looks at state health care reform efforts that could affect people with disabilities. Others list addresses and phone numbers for state health departments, insurance departments, Medicaid agencies, workers compensation agencies and legislative committees; Medicare peer review organizations and carriers; and other resources.

"An Insider's Guide to HMOs: How to Avoid the Hazards and Get the Best Health Care Possible from Your HMO," by Alan J. Steinberg, M.D. 1997, Dutton. This book, by a managed care physician, explains how managed care organizations work, particularly the pressures on doctors to keep costs down. It also includes suggestions on dealing with primary care doctors, choosing a health care plan, Medicare and Medicaid HMOs and other information helpful to consumers.

"We've Come a Long Way, But Can We Survive Managed Care? Health Issues Confronting Women With Disabilities," monograph of April 22-23, 1996, conference proceedings. Rehabilitation Institute of Chicago, Education & Training Center, 345 E. Superior St., Chicago, IL 60611; (312) 908-6042.