On a waiting list for a heart transplant, Sanusi Cole wishes he had more medical bills. If he had enough -- more than $6,000 worth -- he'd be eligible for the state's Medicaid program.
His cardiologist has assured him that he'll get the transplant when his turn comes, regardless of his insurance status. Meanwhile, he's been on an insurance merry-go-round. Sometimes he's covered, sometimes he's not.
He got a Medicaid card in mid-August, and for the first time in months he was able to obtain most of his expensive heart, liver and kidney medications. The coverage, however, was good only until the end of August. Now he will have to do without, again.
"They said without medication, you could be very sick and even die," Cole, 38, fretted.
When he doesn't get his liver and anemia medications, he said, "I feel tired and sleepy all the time. My blood pressure is so low that the last time a nurse checked me, she called in another nurse to make sure she did the right thing."
Is he in jeopardy? "Sure, he is," said Dr. Thomas Traill, a professor of cardiovascular medicine at the Johns Hopkins School of Medicine who treats him. "He's skimping on his medicines, and I don't know which medicines he's skimping on."
Cole, who lives in Rosedale with his wife and four children, worked until a year ago as a toll collector at the Fort McHenry Tunnel. Now, he collects $792 a month in disability payments. His wife makes $200 a week as an aide in a nursing home.
At about $1,600 a month, their income is well below the $2,022 federal poverty level for a family of six. But for Cole to get full Medicaid coverage, his family income would have to be below $573 a month -- 28 percent of the federal poverty level.
Under the "spend-down" rules of the state's Health Department, however, Cole qualifies as "medically needy" only when his medical bills hit a certain threshold (based on his income and family size) during a six-month period. Then, he gets coverage for the rest of the six months.
Cole is one of thousands of Marylanders caught in the state Medicaid program's revolving door. Like him, they have poverty-level incomes and disabling chronic medical problems.
They are poor, but not poor enough. They have medical bills that are high, but often not high enough. They are insured some months, but uninsured others.
Ronald Campbell, 50, of East Baltimore receives $919 a month in disability payments. To qualify for Medicaid from a one-person household, he'd have to be getting less than $350.
"I'm too rich to be poor," he said.
He estimates that he has been on and off Medicaid 10 times since the mid-1990s, when he became disabled and stopped working as a machinist.
Campbell ran up more than $3,000 in bills this spring and summer, qualifying for Medicaid, but he has been waiting for more than two months for the paperwork to be completed so his coverage can resume. Meanwhile, he's holding 13 prescriptions that he's waiting to get filled.
"I'm getting sicker and sicker by the day," he said. "My diabetes is getting worse. My blood pressure is getting worse. My pain is getting worse."
And when his coverage does come through, "I'll be on Medicaid until November. The first of December, I got to start this mess all over again."
The revolving-door coverage for chronically ill patients is "ridiculous but true," said Laurie Norris, a staff attorney for the Public Justice Center.
And it does have an impact on health.
"You lose the whole effect of having continuity of care for people with chronic conditions," said Dr. Thomas O'Toole, assistant professor of medicine at the Johns Hopkins School of Medicine. "We end up looking more like a MASH unit than a comprehensive-care setting."
As of March, the most recent month for which figures are available, about 1,300 Maryland adults had joined the Medicaid rolls because they had met spend-down requirements, the state Health Department said.
Probably two or three times as many revolve on and off coverage in the course of a year as they meet (or don't) the spend-down number, estimates John Folkemer, executive director of the Health Department's office of planning, development and finance.
Dollar limits unchanged
Folkemer said the dollar limits on adult coverage -- allowing full-time Medicaid membership without spend-down -- haven't changed in at least a decade.
Debbie I. Chang, the deputy health secretary who oversees Medicaid, said, "Basically, it's a program for children and people over 65." She said the Health Department has the authority, in theory, to change the eligibility levels but needs budget authority to do so.
The state legislature has provided funds over the past four years to expand children's coverage to 300 percent of the poverty level -- $4,527 a month for a family of four -- and added about 150,000 children to the rolls. It has not expanded adult eligibility.
Chang said she became familiar with the revolving-door case of Jackline Tessmer after the Rosedale woman wrote to several legislators, and one forwarded her letter to the Health Department.
Divorced, but without child support, the 44-year-old has an income of $801 a month from a disability policy she bought when she was a data entry clerk. That's 36 percent below the federal poverty level of $1,252 for a three-person household in Maryland. Yet, to qualify for full-time Medicaid coverage, she'd have to have an income of $434 or less.
Confined to a wheelchair, with her 12- and 13-year-olds changing the bandages on her infected leg, Tessmer is facing $1,800 in unpaid medical bills. In addition to her leg infection, she has diabetes, cerebral palsy, a surgically repaired back and a bad heart
"In her case, even with the best of care, problems may continue," said Dr. Ronald P. Byank, an orthopedic surgeon at Johns Hopkins Bayview Medical Center who has treated Tessmer for four years. "Without the best of care, she's a potential amputation."
After hearing about the case, Chang said the Health Department has been looking for other programs that might help Tessmer.
"Everyone I've talked to on this case feels her pain," Chang said.
The next session of the state legislature is likely to see two different plans for covering the sometimes-insured, along with a much bigger number of poor-but-never-insured.
In Maryland, 117,000 adults are below the poverty line but are not covered by Medicaid, according to the office of Speaker of the House Casper R. Taylor Jr. (Of those, some might be poor enough to be eligible but haven't enrolled, and some might get veterans' benefits or some other form of coverage.)
Taylor is working on a plan to extend insurance coverage.
"If those kinds of people continue to go uninsured, we are not only helping to destroy human life, but exacerbating our long-term costs," as people who go untreated become sicker, Taylor said.
Another plan is being developed by Maryland Citizens Health Initiative.
While that plan won't be finished until November, Vincent DeMarco, executive director of the group, said, "This is exactly the kind of person our proposal would deal with. Maryland does a good job for children, covering up to 300 percent of poverty. Our plan would cover adults at least up to 100 percent of poverty. An increase in the tobacco tax would cover the costs."
No help from economy
Taylor said he expects some action on insurance reform in next year's legislative session, but, given a tight state budget, prospects are uncertain for quick approval of any plan that will require new state funds.
Nationally, while many states have been expanding Medicaid coverage over the past few years, particularly for children, the weak economy seems to be hampering further extensions.
A survey released in July by the Kaiser Commission on Medicaid and the Uninsured found that 41 states are considering cutbacks to reduce the rate of growth in Medicaid costs.
Cindy Mann, a senior fellow at the commission, said that about a dozen states have higher income cutoffs for the disabled than for other adults.
If Maryland adopted this, it might pick up the few thousand Medicaid spend-down patients, without necessarily covering all 117,000 poverty-level uninsured.
While various reform plans are drafted, getting and paying for care is a daily struggle for Sanusi Cole, Ronald Campbell and Jackie Tessmer.
"When you call for appointments," said Tessmer, "the first thing they say is, 'What's your insurance?' And if you say, 'none,' it blows you out of the water."
Clearly upset, she pauses to use an asthma inhaler, then continues, "I've had doctors tell me they don't care what insurance I have. But when I miss two payments, I get a notice that says I can't come back."
Tessmer has been sued by a hospital and a medical practice.
"I don't answer the phone because of bill collectors," she said. "It's all paid except my medical."
O'Toole, the Hopkins professor, is also a program officer for the Open Society Institute, and in that capacity conducted a study this summer in which medical students interviewed 274 patients at health clinics in Baltimore.
The study found that 46 percent of those interviewed had medical bills they couldn't pay. The average reported medical debt was $3,409, nearly half the average $7,864 annual income of those surveyed. Of those with debt, four in five reported having been contacted by a collection agency.
Another problem for those on revolving-door coverage -- Tessmer, Cole and Campbell all said they had experienced it -- involves paperwork processed by the Health and Social Services departments.
Campbell, who submitted a printout of more than $3,000 worth of Hopkins bills to Social Services on June 18, said he got a letter Aug. 8 saying he hadn't documented his medical costs.
"I'll get another printout and take it up there," he said. "I just got to keep on pushing. But this is two months I've been without my medicine, and it makes my health worse."
He's now turned to Legal Aid to help him press his eligibility case.
Each person has tried to navigate the system, and each has found some programs to help. But each program comes with its own limitations and complications.
Cole was moved from one federal disability program, which was paying him $552 a month, to another, which pays $782. But the extra money triggered a crisis -- under the first program he automatically qualified for Medicaid; under the second he had to meet a spend-down.
Cole said he tried to buy health insurance through the state's open-enrollment program but was told the policy wouldn't cover his pre-existing heart condition.
Campbell said he gets his insulin from MEDBANK, a nonprofit that distributes free medicines from drug companies. But he hasn't been able to get his other medications that way. He applied for pharmacy assistance, the program that helps Tessmer, but was told his income was too high.
Campbell, who said he has learned about programs through "word of mouth," got on the rolls for Medicare, the federal health insurance program that covers some disabled as well as the elderly. But it requires a 20 percent co-payment for most medical services and doesn't cover prescriptions at all.
Co-payments a burden
Tessmer said her social worker helped her do the paperwork to qualify for the state's pharmacy-assistance program, which lets her get her prescriptions filled for a $5 co-payment. However, with about a dozen prescriptions, she's facing $60 a month in co-payments, which eats up a substantial part of the difference between her $801 disability check and her $530 rent on her Rosedale apartment.
Trying to reduce her rent costs, she is on the waiting list for a Section 8 housing subsidy. She was bumped off the list last year when she was hospitalized, and had to get reinstated. The wait for Section 8 help is generally two to five years, according to J. Peter Sabonis, executive director of the Homeless Persons Representation Project, an expert on aid programs for the poor.
Tessmer is ineligible for the federal disability programs because of the disability insurance she bought when she was working, according to Sabonis. In any case, the federal disability program that would make her eligible for Medicaid would give her only $545 a month in cash -- not enough to pay her rent and utilities. "So she's health-care rich," Sabonis said, "but she's facing eviction every month."
After hearing about her case, the Health Department found a program that might qualify her for coverage. She said Friday that she has requested an application for that program, but doesn't know for sure if she will qualify.
While there are some clinics that treat the poor and uninsured, O'Toole, who studied the clinics for Open Society Institute, said, "The safety net is primary care. Emergency departments, hospitalizations and specialty care are not typically available from safety net providers."
Said Tessmer: "I try real hard to keep it together and still give my kids a life. I thought I was being smart taking out my disability [insurance policy]. But everywhere you turn around, there's a catch, or a crack that's trapping me."