Navigating the Medicare Maze

As part of its continuing series, "GMA Gets Answers," "Good Morning America" is taking a hard look at the insurance industry, both public and private. On today's show, Chris Cuomo looked at the enormous amount of confusion surrounding how people on Medicare get their drugs covered.

When Dorita Mahmoud's doctor told her she was suffering from a potentially fatal lung infection, she says she was willing to take on another battle with illness. What she didn't anticipate was a fight with the government to get the treatment she needed.

"Every challenge has been a learning experience," she said.

Mahmoud is no stranger to health-care battles. Throughout her adult life, she has suffered from heart and lung disease, serious sleep apnea and spinal problems, all while still caring for her daughter.


"GMA" first met Mahmoud in February, when Cuomo profiled her daughter, Vennie. The high school senior became a star student and won a prestigious college scholarship, even though she was regularly caring for her mother in a hospital or at home.

In recognition of her accomplishments, "GMA" sent Vennie and her mother to Los Angeles for the broadcast's coverage of the Academy Awards.

Just a few months after the trip, however, Mahmoud was diagnosed with pseudomonas, a serious infection in her lungs. As Mahmoud became sicker, the infection began to affect her quality of life.

"It's the little things," Mahmoud said a few weeks after being diagnosed. "I went to pull the trash can down from the top step. I had to stop and literally hold on to the railing and just stay there for a good five minutes before I could get enough air to make it back up those steps."

To treat the infection, Mahmoud's doctor prescribed an inhaled antibiotic called tobramycin. The drug, which is commonly used to cure pseudomonas, is administered through a breathing machine called a nebulizer. The treatments take about 15 minutes and are given twice each day.

But the drug, which retails for about $4,000, was too expensive for Mahmoud. So like 42 million Americans who use Medicare, Mahmoud turned to the government for assistance getting her medicine.

Medicare's Maze

While Medicare is often thought of as a single word or program, it actually takes on many forms. Over the years, efforts to streamline the program and make it more efficient have resulted in a maze of plans and paperwork.

Medicare is now made up of four parts — labeled A, B, C and D — two of which are run by hundreds of private insurance companies that contract with the government to provide service to seniors.

Critics say this expansion has lead to confusion. In Mahmoud's case, when she attempted to get her prescription filled, she could not find a provider that would supply the drug through Medicare for in-home use. Yet no one she spoke to could explain why the medicine was not covered by Medicare.

Each suggested another part of Medicare was responsible for the coverage and asked Mahmoud to call someone else.

"I have documentation of each person I spoke to each time," Mahmoud said. "I've made a minimum of 65 calls, if not more."

How confusing was the process? Mahmoud's doctor told her to call her home health-care service to order the drug. That service said it couldn't provide it and suggested Mahmoud call her pharmacist.

When she reached out to her pharmacy, she was told to call the insurance company through which she receives her Medicare Part D prescription drug coverage. And when she reached that company, it asked Mahmoud to call Medicare's hot line, 1-800-Medicare.

But even the government's hot line could not interpret Medicare's rules. An operator at 1-800-Medicare told Mahmoud to call her doctor, sending her right back where she started.

Judith Stein runs a legal advocacy center for Medicare participants who need help navigating the system. She says Mahmoud's experience is not unique.

"You should get a notice that tells you who to call, why you were denied," Stein said, "but you'll only get that if you actually get the service."

Stein said patients often do not receive an explanation of why a drug is not covered because Medicare's appeals process is only triggered after a patient receives a service and Medicare refuses to pay for it.

In Mahmoud's case, suppliers she contacted were forced to interpret Medicare's rules without clear guidance. Because they did not believe Medicare would reimburse them the cost of the drug, suppliers refused to provide it to Mahmoud, unless she paid the $4,000 retail cost.

Critics, like Stein, say this policy has created a system oriented to denying care, rather than providing it.

"[Medicare] was supposed to be in the business of providing basic health care for older people and people with disabilities," Stein said. "I believe that misguided cost effectiveness — which I do not believe is even cost effective — is leading to thousands of erroneous denials with very little opportunity for people to appeal, very little advocacy out to help them."

Getting Answers

As part of its "GMA Gets Answers" series, "Good Morning America" attempted to navigate Medicare on Mahmoud's behalf. After two weeks of phone calls to many of the same people with whom Mahmoud had spoken, "GMA" was able to get assistance from officials at the Centers for Medicare and Medicaid Services.

In a written statement to "Good Morning America," William Rogers, a physician who works for Medicare, said: "Many of the issues concerning Medicare eligibility and coverage are governed by federal law and therefore, the agency has limited ability to adapt the coverage rules when we are confronted with unusual clinical situations."

Officials say the reason why providers would not supply the drug to Mahmoud has to do with detailed "coverage rules" that dictate which medical diagnoses a patient must have in order to have Medicare pay for a particular drug.

"Unfortunately the law allows Medicare to pay for drugs only if the drug is being used for a purpose which appears on the drug label, or for a purpose which is listed in one of two compendia," Rogers wrote. "Since neither the label nor the compendia listed this drug for this purpose, the law prevented Medicare from paying for the drug."

Medicare says that based on these rules, Mahmoud needed a different diagnosis from her physician before she could receive tobramycin through Medicare Part B, the section of Medicare that pays for inhaled drugs taken at home.

Because the rules for Medicare treatment in hospitals — called Medicare Part A — are different, Mahmoud could receive the drug in a hospital if her infection became so dire it required hospitalization.

Eventually that's what happened. Mahmoud says she called her physician and said, "I'm losing ground with the infection. I'm ready to go into a facility." The following day, she was admitted to a nearby emergency room.

Stein, the executive director of the Center for Medicare Advocacy, says Medicare patients regularly end up hospitalized when other parts of Medicare do not pay for treatment.

"This happens very often," Stein said. "We have people who have to decline to a much more acute level in order to get the service they actually need."

Medicare officials disagree. They say that while some patients are not able to get the treatment their doctors want, most are cared for by the system.

One official said Medicare is one of the most efficient insurance companies in the world, processing more than 1 billion claims each year with very low overhead. Medicare estimates it spends less than $1 in overhead for each claim it processes.

Medicare advocates say situations like the one in which Mahmoud found herself are examples of inefficiencies in the system, especially when it comes to the rules that govern which drugs are covered through the various parts of Medicare. For example, hospitals often have more latitude to provide treatments paid for by Medicare than nursing homes or home health providers.

In fact, one study, published by the Infectious Disease Society of America, estimated Washington would save $1.5 billion over five years just by covering certain types of antibiotic treatments at home rather than only in hospitals.

Analyzing the Costs

So "GMA" analyzed the differences in cost related to Mahmoud's treatment at home versus in a hospital.

Based on pricing information published by Medicare, the government would have paid about $3,400 for her to receive the tobramycin treatment her physician prescribed in her home.

Once Mahmoud was hospitalized, the cost to treat her skyrocketed. Depending on how her hospital submits her stay in Medicare's billing system, Medicare officials estimate taxpayers will pay roughly $12,000 for Mahmoud's 15-day hospital stay. In addition, Mahmoud must pay a $992 co-pay to the hospital.

While Medicare officials turned down requests by "GMA" to appear on television, they did work with producers behind the scenes to provide information about how the system works — details not usually shared with patients.

Medicare also agreed to communicate with Mahmoud's doctor directly. Together, they were able to find an additional diagnosis category for Mahmoud's condition. This new diagnosis allowed Medicare to pay for the medicine.

After more than six weeks — including a two-week hospital stay — Mahmoud finally received the medication she needed at home, paid for through Medicare.

Stein and others say Mahmoud most likely would not have received the same level of attention from Medicare had "GMA" not been involved in her case.

"Even with all the wherewithal of ABC its seems that you may or may not have gotten full information," Stein said. "Nor were you told how to get this corrected for all the other Doritas with this condition across the country."

Stein says that without assistance, elderly and ill patients on Medicare are rarely able to navigate the system, especially if they require more unusual forms of treatment or care.

"The sad answer is people go without the care they need. And that's truly a tragedy, particularly when the fact is Medicare should cover their needs," Stein said.

Mahmoud says she considers herself lucky, but fears for others who do not have assistance dealing with Medicare.

"I not only look at this as me, I don't see just me going through this," Mahmoud said. "I see the 80-year-old that's on Medicare, the 85- or 90-year-old that doesn't have an advocate, that doesn't know the phone calls to make or the resources that possibly are available to them. The ball gets dropped and these are the ones that fall through the cracks."