Connective Discoveries

Cheree Schneider’s illness robbed her vitality just as she started a fresh chapter in life.
At age 28, weeks shy of graduating from cosmetology school in Minot, N.D., she went to the emergency room so a doctor could examine the sores on her fingers.

But her fingers – cold, blue and badly infected – were mere symptoms of Schneider’s real problem: Her immune system was attacking her body more vigorously than ever before. At 14, she was diagnosed with Lupus, a chronic inflammation of tissues and organs.
Now 30, her health has deteriorated markedly since that trip to the ER. Her most debilitating problem is severe weakness in her muscles, caused by inflammation and degeneration.

She often needs a walker or wheelchair to get around, and spends most of her time homebound, resting in a recliner, unable to work.
Her skin and other tissues have hardened and thickened. Her hands are clenched like shiny claws.
Her esophagus shrinks and must be stretched from time to time so she can swallow food.

But Schneider faces a bitter irony.

She is so sick she can’t work, but not sick enough to qualify for disability payments. Schneider had to fight to qualify for medical assistance because she lost eligibility when she became a student. She eventually qualified for coverage, but it took the advocacy of a friend and North Dakota’s congressional delegation.

The Sawyer, N.D., woman continues to fight to keep coverage of expensive treatments to try to halt her progressive illness.
In a society divided into medical “haves” and “have nots,” Schneider is a very sick have not.
She believes the best chance of getting her immune system back in balance is from a transplant therapy that uses stem cells harvested from her own blood.

The procedure, risky and expensive, was recommended as an option by a specialist at the Mayo Clinic in Rochester, Minn.
The amount North Dakota Medicaid can pay falls tens of thousands of dollars short of what the Chicago medical center that offers it needs.
So, she must go without.

The three drug therapies her doctors have tried so far have failed to halt the progression of her complex autoimmune illness, called mixed-connective tissue disease.

“I’m on death row, and everybody’s worried about how they get paid,” Schneider says. Gap could widen Dr. Charles Christianson, a family practice physician who teaches medicine and medical ethics at the University of North Dakota medical school, says medical assistance often provides less coverage than private insurance.

Medicaid, the government health insurance program for the poor, provides coverage for 53,000 North Dakota patients. The federal government pays two-thirds of the cost, but mounting budget pressures make the program a target for cuts in budget negotiations now before Congress.

So the gap between the med ical “haves” and medical assistance “have nots” could widen. That’s unhealthy for a society that views universal access to health care as a basic human right, Christianson says.

“If you rely on Medicaid, the reality is you have less access to health care,” he says. “Ethically, that’s hard to justify.”
He adds, “We could expect with the federal budget that would only get worse.” And without effective treatment, Schneider’s health likely will only get worse.

Della Mae Zeitler, one of Schneider’s teachers at the cosmetology school, has seen her former student’s health decline significantly in the past two years. Schneider has lost more than 50 pounds. Once fullfigured with rosy cheeks, she is now withered and frail.
Despite being bedridden much of her senior year of high school, she graduated with honors. A decade ago, she nursed her mother through a long battle with cancer.

“I’ve watched her deteriorate from a vibrant, bright young lady,” Zeitler says. “I’ve watched her shrivel into nothing.” Running into a ceiling
Last year, friends in Minot held a benefit to help raise money for Schneider’s medical care. The event garnered $1,800, enough to send her to Chicago, where specialists at Northwestern Memorial Hospital determined she was a candidate for a stem-cell transplant. The treatment essentially destroys the immune system, then rebuilds it.

But she ran into a ceiling: The North Dakota Medicaid program pays up to 46 percent to out-of-state hospitals for medical care; Northwestern needs at least 60 percent. Only a few major medical centers in the country offer stem-cell transplants, and none of them are in North Dakota.

The transplant procedure, which requires a hospital stay and weeks of close monitoring, costs $150,000. The state can pay up to $69,000, or $21,000 short of what the medical center will accept. North Dakota Medicaid can’t pay more than the cap to out-of-state hospitals because the limit is part of the state’s agreement with the federal government. Paying more would violate the agreement, putting federal contributions at risk.

“We can’t afford to lose the federal funding,” says Maggie Anderson, who oversees North Dakota Medicaid. “At this point it falls to Northwestern if they would be willing to accept our reimbursement. We have done what we can on this end.”
In the two years since Schneider’s mixed-connective tissue disease was diagnosed, Medicaid has paid more than $135,000 for her medical care, according to Medicaid officials.

Payment caps are necessary to stretch limited resources in a program that must cover 53,000 people, Anderson says.
“We certainly do try to balance the unique individual needs against the needs of the entire Medicaid population,” she says.
Alternative therapy Duane Peters, a spokesman for the National Lupus Foundation, says there are many Cheree Schneiders around the country, people with systemic Lupus and related autoimmune diseases that are chronic, expensive and difficult to treat.
“This is a disease that strikes mostly young women,” he says. “Many times they lose their health-care coverage because they’re not well enough to maintain fulltime employment, but they’re not sick enough to be on disability.”

Without disability, Schneider’s mother is her support system. Her mother drives more than 20 miles twice a day to help her bathe, prepare meals and handle other chores of daily living. Now, with the financial door seemingly closed to a stemcell transplant, Schneider’s doctors are trying an alternative therapy. She has been given intravenous infusions of a drug originally developed to treat certain cancers. Medicaid approved the procedure, Schneider says, and is paying for the treatments.

Last week, after receiving her second round of treatment, she was feeling exhausted, with chills and a fever, but otherwise tolerating the strong medicine. The treatments at MeritCare’s Roger Maris Cancer Center in Fargo continue this week and finish next week.
Her doctors hope to find something to halt or slow the progress of her illness, but a cure isn’t considered likely.
Her weight loss has slowed recently.

Schneider is thankful to get the infusion drug therapy, and hopes for a remission. Her doctors will perform lab tests a week after her treatments end for early signs of results. But she and her doctors worry about what the future holds.
“She’s a little bit of a ticking time bomb,” says Dr. James Carpenter, a rheumatologist at MeritCare who has been treating Schneider since March. “She’s stable at a bad level.”
Readers can reach Forum reporter
Patrick Springer at (701) 241-5522