Lee Ann Torrans Social Security Strategy

Mar. 21--Janis Mezzell was a proud and private person. But by last September, she came to realize her only shot at survival was to beg.

The 50-year-old seamstress sat down at a computer in her Bruceville-Eddy home and typed a letter to lawmakers.

Mezzell revealed she had worked since she was 17 years old and paid her taxes. She described in glowing terms the daughter she had raised on her own.

She then explained she had become so ill she couldn't work. Her only hope was a liver transplant. The problem was a rule requiring disabled people to wait two years to get federally funded health care.

"I'm unlikely to make it until then," Mezzell wrote. "If I do, there is a good possibility I will not be in good enough condition for the procedure. So you see, I am in quite a jam... I know I have a lot more to give and live but I need help."

Two months later, Mezzell was dead.

Her liver disease caused her to slip into a coma and on the Sunday after Thanksgiving, her body gave out.

Mezzell's close-knit family members -- consisting of her mother and college-age daughter -- were devastated. They knew they had done everything they could to save her.

They called countless health insurance companies, formulated a fundraising plan and prevailed upon friends with connections.

But in the end, they were powerless to help Mezzell. That she died of a curable disease because she did not have health insurance is something daughter Colby Lowrey thinks about daily.

"Basically, it's a kill-off policy is what we've figured out," Lowrey, 21, said of the two-year wait period. "In the most developed country in the world, this shouldn't happen."

At any given time, about 1.8 million disabled people nationwide count the days until they can receive government-paid health care.

It comes in the form of Medicare coverage, a program that primarily covers seniors but also is offered to disabled people. An estimated 4 percent to 13 percent of people die before the 24 months are up.

A significant portion of those who make it through get sicker during the wait period because of a lack of coverage, experts said. Some people's conditions deteriorate past the point of no return, leaving them with handicaps that could have been prevented.

Those lucky enough to be able to pay for treatment often deplete their savings. Some are forced to declare bankruptcy because of the medical bills.

Advocates had hoped the wait period would be eliminated as part of national health care reform. That idea was backed by a coalition of more than 100 groups that includes organizations such as the Alzheimer's Association, the Arthritis Foundation and the National Alliance on Mental Health.

But the provision was dropped from reform bills early in the process, largely because of the price tag. The Congressional Budget Office has estimated eliminating the wait period would cost $113 billion through 10 years.

The coalition then focused on supporting reform measures that could help make coverage more accessible to people during the wait period.

For example, it has pushed the idea of expanding Medicaid eligibility and creating health insurance exchanges that might offer more affordable private plans.

But even if those reforms are enacted, they are just another Band-Aid on a gaping wound, said Alfred Chiplin, senior policy attorney for the Center for Medicare Advocacy, a member of the coalition.

"It's all kind of work-arounds," Chiplin said. "It really doesn't solve the problem.

Paul Precht, director of policy and communications for the nonprofit Medicare Rights Center and unofficial spokesman for the coalition, said the wait period clearly has life-or-death consequences for some people.

Otherwise, Congress wouldn't previously have eliminated the wait period for people with two conditions: Lou Gehrig's disease and end-state renal disease, he said.

"Not to begrudge folks with those two conditions, but (immediate coverage) should apply for everyone," Precht said. "(The wait period) is essentially a way of rationing care."

Medicare primarily covers people older than age 65. But in 1972, it was expanded to include younger people who are disabled.

The catch was that disabled people must wait 24 months after they begin receiving disability payments to be eligible for Medicare. Because it takes five months for the Social Security Administration to send disability payments once a patient is approved, people must essentially wait 29 months for medical coverage.

Social Security officials acknowledge that cost containment is one reason for the wait period.

It also is driven by a desire to make sure only permanently disabled people get coverage and that people don't drop private plans available to them in favor of a government-paid plan, officials said.

Some health care policy experts say those concerns are still valid. Cost is a real issue, said Ed Haislmaier, a senior research fellow at the Heritage Foundation, a Washington, D.C., think tank.

Plus, Medicare is set up to award benefits after a one-time determination, Haislmaier said. It does not have a mechanism to routinely re-evaluate whether people are still eligible for coverage.

Because of that, there needs to be reasonable assurance that disabled people who get Medicare need it for the long term, Haislmaier said. People whose conditions can be resolved with short-term care should be funneled into programs with routine eligibility reviews, like Medicaid, he said.

Another solution could be for the government to offer subsidies to disabled people during the wait period to enable them to purchase coverage.

He cited how a recent government subsidy for laid-off workers increased the number who kept coverage through COBRA, a law that allows people to temporarily continue their old workplace insurance.

"These are transitional situations," Haislmaier said.

Another issue looming over the discussion is that Medicare is already on a quick course to insolvency and already struggles to find physicians willing to see patients because of the program's relatively low fee schedule, said Matt Patterson, a health policy analyst with the National Center for Public Policy Research.

"It can't meet existing promises," Patterson said of Medicare. "I don't see how we can offer additional benefits to additional people."

Advocates, though, say eliminating the wait period is the best option. A key reason Medicare was created was because private insurers were not offering adequate and affordable coverage for seniors, Precht said.

The same phenomenon exists for the disabled, he said.

"For all of its imperfections, Medicare provides a level of security for people with disabilities... that is just not available through private insurance," he said.

As for arguments that the wait period is needed to ensure only permanently disabled people get coverage, or that people don't prematurely ditch private coverage, Precht said they don't hold up to scrutiny.

To be declared disabled by Social Security, medical evidence must exist showing a person cannot work for at least a year. Although it's possible some people who make it through that process could recover before the end of the two-year wait period, that's rare, Precht said.

Even in instances in which it is true -- such as people needing transplants -- the only way they are going to get better is if they get prompt care, he said.

As for crowding out private coverage, the reality is many people in the wait period didn't have coverage before becoming disabled, Precht said. Research has shown that's true for about 22 percent.

Perhaps an even greater issue, though, Precht said, is that many people can't afford to continue COBRA payments after getting sick.

Employers usually pay a large portion of the tab. And without that help, disabled workers can't afford the entire premium.

That's especially true after the first 18 months of COBRA coverage, Precht said, when disabled people can be asked to pay 150 percent of the cost of their old plan.

Typically under COBRA, people have to pay 102 percent of premium costs.

The best alternative to ending the wait period is to expand Medicaid, Precht said. It's a government program that primarily covers the poor, including disabled people with low incomes.

Eligibility for the program varies from state to state, since states help fund the program along with the federal government.

Eligibility expansion One way to expand eligibility would be to raise income limits, Precht said. Another would be to bolster programs that allow people to obtain Medicaid even if they are over the income limits.

One such option is a buy-in program, which allows people to get Medicaid coverage in exchange for a monthly premium.

Another option, known as spend-down, allows people to get coverage after they spend a certain portion of their income on medical expenses.

Texas has only limited versions of those programs. Adults must be employed to buy into Medicaid, and spend-down is available only to children and pregnant women.

The only other exceptions are for low-income women who have breast or cervical cancer, or very-low-income adults who have children who get welfare assistance.

Other than that, Medicaid is off-limits to Texans over the income threshold, even if they are disabled.

That's what Janis Mezzell's family eventually found out the hard way.

She applied for Social Security disability and Medicaid coverage in December 2008, about a month after she was diagnosed with chronic liver failure.

The drugs she was prescribed for the disease affected her so much she couldn't work.

Because her condition was life-threatening, Mezzell was quickly approved for programs. Through Medicaid, she started the process of getting on the liver transplant list.

Organ replacement was her only option, because hepatitis C she contracted as a teenager had caused cirrhosis of her liver.

As Mezzell was navigating the pretransplant process, she received a letter last May that said her Medicaid coverage was about to end.

The reason? Her disability payments from Social Security were about to start, and the $845 per month would push her over the Medicaid income limits.

Without coverage, Mezzell was told she could not continue the process of getting on the transplant list. She was in a state of shock, said her mother, Nell Stinebaugh of Bruceville-Eddy.

"She did everything they said, everything they had told her to do," Stinebaugh said.

Mezzell had worked as a self-employed seamstress most of her life. She was married for several years, but got divorced when her daughter was about 3 years old.

After that, she and her daughter lived with Stinebaugh. Mezzell worked hard to earn a living, but she always got by, Stinebaugh said. She sewed costumes for local dance teams in addition to working for individuals.

Mezzell liked her work, especially because it allowed her to be more involved in her daughter's activities, Stinebaugh said.

But being self-employed meant she couldn't afford health insurance for herself. She used the only extra funds she had to buy coverage for her daughter.

When Mezzell started feeling ill, she went to see a physician at Waco's Family Health Center, Stinebaugh said. The facility, 1600 Providence Drive, treats uninsured and low-income people for a reduced fee.

The center helped Mezzell as much as it could, Stinebaugh said, including providing prescriptions. But it provides only primary care.

When its patients need specialty care, the center is usually able to find a local physician willing to see them for free. But there are no Waco-based surgeons who perform transplants.

Mezzell's daughter explored the idea of raising funds so her mother could pay an out-of-town doctor. A family friend who works for a professional sports team thought the team could raise the $250,000 estimated cost.

But officials at the Dallas hospital Mezzell was working with refused to do a transplant for a cash patient. If something went wrong during the surgery, they said, costs could skyrocket, and the hospital would be stuck with the tab.

Other hospitals the family approached had the same policy.

Mezzell tried to remain optimistic, her family said. But the sicker she became, the more desperate she got.

"I have always done my best to lead by example and do what I can for my community, the school, senior citizen groups and individuals that could use my talent," Mezzell wrote in her letter to lawmakers. "It is a shame that Texas, the state I love so much, is willing to throw me away so easily, just because there is no affordable insurance.

"Why should I die for this? How would you like it if this happened to you or someone you loved?"

Mezzell's situation also stumped Potter's Vessel Ministries, a Waco nonprofit organization that helps people get prescriptions and other medical help.

Debbie McElveen, a nurse with the group, said she knew what was wrong with Mezzell the minute she walked in. It was about a month before she died, and her yellow skin from jaundice and bloated abdomen were giveaways.

McElveen called organizations such as the American Liver Association to try to get Mezzell help. She also researched clinical trials for liver patients, only to be told Mezzell was ineligible.

"You have to have insurance even to be a guinea pig," she said.

McElveen eventually had to tell Mezzell she was out of ideas. That was unsettling for McElveen, who said she is usually able to find help for those in desperate situations.

"Just to see her go down...," McElveen said, her voice trailing off. "It was very frustrating."

Brian Dodd, executive director of Potter's Vessel, said the agency sees a steady stream of people who have difficulty during the wait period.

In fact, he experienced it himself some years back, after post-polio syndrome forced him to leave his job as a nursing home administrator.

Dodd counts himself lucky because he was able to continue his old insurance during the wait. But the cost of premiums, coupled with other out-of-pocket medical costs, nearly bankrupted him.

"It's really nonsensical," Dodd said. "We say, 'We all agree that you're disabled, but you have to wait two years to get care...' That's the thing people are holding their breath for. They're getting food and getting clothing somewhere. There are charities that help with those things. But they need care."

Dodd said Mezzell was not the only local person Potter's Vessel has seen die recently during the wait period. Another woman sought help last November.

Robertson's story Lytle Lynn Robertson, of Elm Mott, also needed a liver transplant because of cirrhosis caused by hepatitis C. But because she was in the wait period, she didn't receive it and died the day after Christmas.

Robertson, 59, had known she was ill for some time, said her sister, Everta Heister, who lives in Elm Mott. It was difficult for Robertson to walk, but she still went to work at a local package-processing company because she needed the health insurance.

After a long process, Robertson was put on the waiting list for a transplant last summer, Heister said. But when she was laid off in August as her company downsized, she lost her coverage.

Unable to pay the premium on her own, she became uninsured and was kicked off the transplant list.

Robertson applied for Medicaid, but her disability payments put her over the income limit, her sister said.

"She didn't qualify for nothing," Heister said. "I thought if you were almost dying, you would get something."

By December, Robertson was critically ill, her sister said. She couldn't walk and had trouble talking because it was difficult for her to breathe.

Robertson suffered through the pain on Christmas to avoid missing the family's celebration, Heister said. The next day, though, she went to the emergency room and was admitted to the hospital. She died later that day, her son's 26th birthday.

Her son, an Army soldier, didn't make it back from Iraq in time to tell her goodbye.

Heister said she's not sure what could be done to reform the heath care system. But her sister's experience made her realize disabled people fall through the cracks.

"You should get (help) when you need it," Heister said.

Mezzell's mother agreed. Stinebaugh said she doesn't know enough about the health care industry to advocate specific reforms. But something has got to give, she said.

No one else should have to lose their child to a curable disease.

"She was a valuable person who is gone," Stinebaugh said. "I think people who have worked hard all their lives, paid their taxes and given back to the community, there should be something for them. There's something wrong with the system.

"There's got to be somebody who can figure this out, and they've got to leave politics out of it."

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Lee Ann Torrans
Attorney at Law
6532 LBJ Freeway
Dallas, Texas 75240

http://socialsecuritystrategy.com

ltorrans@gmail.com

214-500-5410 (cell)
214-231-2886 (E-fax)