July 01--REEDSBURG -- Emily Rogers has progressed so much during her three-year battle with a rare autoimmune disease that she can write her name again and hold a sandwich without squeezing it so tightly that it squishes between her fingers.
Those are major milestones for Emily, 45, a former teacher and mother of three who has been limited to a wheelchair since Devic's disease took over her body by producing antibodies that attack her spine.
Much of the credit for her progress goes to an expensive drug and the surgical insertion of a pump that sends a muscle relaxer directly into her spinal fluid. But equally important, say Emily and her husband, Phil, was learning to navigate the health care maze before, during and after those treatments.
While the debate over national health care policy rages on following last week's Supreme Court ruling upholding the Affordable Care Act, the efforts the Rogerses have made at being personally involved in their care has been both harder and more effective than any government policy.
"Your health care is a 'we' thing," Phil said, adding that Americans must learn about their illnesses and how to work with their providers and insurers to get the care they need.
"You have to be engaged in your health care just like you should be engaged in your education."
The couple believe health care, whether administered privately or publicly, is a life game that is won or lost by attitudes, work ethic, knowledge and persistence.
They know Emily's quality of life and recovery depends on how they play it.
"This is the lot that we have," said Phil, a principal and teacher at the St. Peter's Lutheran Church school in Reedsburg. "We pray about it. Our church continues to support us and pray for her and for us through it."
But they know they can't sit still and wait for miracles to occur.
"It's bigger than us, but we do the things we're supposed to do, that we need to do to make it work," Phil said.
To do that, first they split up the workload.
Emily knows she has a role to play as a patient to get the care she needs. "I couldn't just sit back and say, 'You are the doctors, you fix me.' I did my part, too, with my attitude, with everything," she said.
Emily, who is almost always upbeat, can't remember how many times she has heard from medical people that she's a great patient.
"You have to be your own advocate, you have to do your part," she said. "That's how the whole system works better."
Phil's job was to be relentless in his research and education of Devic's disease, and to ensure everybody was doing his or her job to help Emily. One day he found a Sauk County health care advocate who helped him sift through all the paperwork needed to get financial help through disability and Social Security. The next day he was learning everything he could about possible treatments and their side effects.
Drug initially denied by insurer
The couple were tested right after Emily got sick in 2009. Doctors prescribed four infusions of rituximab, which would have cost their health insurer $80,000. Even more concerning were the potential side effects, which included cancer and multiple sclerosis.
Phil urged Emily to take the drug, but their health insurer denied it just as they went to the hospital for the first treatment. "I was taking that as a sign from God that this wasn't something I should do right now," Emily said.
But Emily continued to struggle with the disease and was hospitalized numerous times. Her doctors continued to urge her to try the rituximab infusions. She said OK last year -- and because the cost dropped to $36,000 for the four infusions, so did the Rogerses' health care provider.
It turned out to be a solid investment because Emily hasn't needed a costly hospitalization in nearly a year, and she has cut way back on the pills she has to take. Her neurologist said her body can start to regenerate itself by rewakening nerves, but that could take many years.
"I'm not going to be back 100 percent, but there's healing," she said with a smile.
Emily was excited about the Supreme Court's decision Thursday that upheld the health care overhaul because she thinks it's the best plan to get everyone covered affordably. "I think this is what the country needs to get started with things," she said.
Phil said he hopes the Affordable Care Act will ultimately improve preventive care, including dental care, for all Americans.
"We know that poor dental care has a direct impact on heart disease," Phil said. "So if you don't get that dental care for those families ... how will much will surgery for a stent cost for them? How much is the Med Flight trip from here to Madison to get the surgery because it's an emergency? How much does that cost compared to giving someone dental care on a regular basis?"
Regardless of what policymakers ultimately settle on, the couple expect they'll still need to push and prod medical professionals to get what they need.
"It's not that they don't want to do it, it's not that they don't care," Phil said, adding the couple have been blessed by wonderful doctors, nurses, hospital administrators, family members and friends. "It's just like the rest of us, they need a push constantly to remind them that, 'Look, I need this from you,' or 'I'm following up on that.'
"You have to keep on top of them and keep it in front of them so they continue to work with you."
(c)2012 The Wisconsin State Journal (Madison, Wis.)
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