Elinor Mire's race with cancer and the insurers for AISD
Austinite Elinor Mire's passion for teaching has been a sustaining force in her life. And yet being a teacher at least for the Austin ISD was nearly her undoing.
Mire had been a first grade teacher in Louisiana after graduating from college, but for several years after she moved to Austin in 1983 her life took other directions. She worked at a construction company, as a day trader, and as a race director in the city's growing running community. She created the triathlon program For Kids Only, which sought to encourage kids to swim and bike and run. In 1995, Mire received a Bob Rodale Golden Shoe Award from Runner's World magazine for her dedication and service to the running community in Austin, and she was race director for such Austin running classics as the Thundercloud Subs Turkey Trot and the Jingle Bell Run. She also was instrumental in bringing the Danskin triathlon to Austin, and was its race director for three years.
In 1994, Mire returned to teaching, as an AISD reading specialist. She says she "felt like I was home again." Mire taught at a number of schools in Austin, including Andrews and Widen elementary schools, teaching first through third grades as well as special education. Because of her passion for teaching and her way with the kids, Mire received Master Teacher recognition by the State Board for Educator Certification as well as recognition for her involvement in the DARE program.
She also continued her involvement in local races, as an administrator and race director and as a participant. Over 20 years, Mire completed about a dozen triathlons, six marathons, and two ultramarathons. Although she was never an elite athlete her marathon times are in the five-hour range she was an enthusiastic participant, and most of her close friends were also runners.
Four years ago, Mire began experiencing a variety of troubling physical symptoms at first pain in her wrist, and then pain in her legs so intense that it woke her in the middle of the night. She saw a variety of doctors physicians, chiropractors, naturopaths. Nothing seemed to help, and none of the experts were able to diagnose her illness. In the summer of 2003, Mire was hospitalized because of the intense leg pain, and she learned that she had extensive blood clots in both legs. Her tongue was enlarged, and she was having difficulty swallowing. Her brother, a physician in Louisiana, suggested that she be tested for amyloidosis a rare disorder in which insoluble protein fibers build up in the body, impairing muscles and organs. Mire's Austin physician declined to do the tests, and she was sent home to struggle with the pain, and the frustration of not knowing the nature of her illness.
In October of 2003, Mire consulted a rheumatologist who determined that she did indeed have amyloidosis. Moreover, the doctor also found multiple myeloma a cancer of the blood and bone-marrow plasma cells. Multiple myeloma is rare, but it is not unusual to see it in combination with amyloidosis. The treatment protocol is identical: stem-cell transplantion and chemotherapy.
Mire was ready to begin the direct battle against her diseases. Unfortunately, instead she became engaged in a struggle with the AISD insurance company: Amil International. When Mire's physician submitted a request for a preauthorization to treat her cancer by using "peripheral stem-cell transplantation" (from blood cells), Amil declined to provide the coverage. The company did not dispute the medical necessity of the treatment but determined that the procedure is specifically excluded from coverage under the AISD insurance plan.
In multiple myeloma, cancer cells form within blood plasma and multiply very quickly very strong chemotherapy is required to kill the cancer. Unfortunately, the harsh chemicals that kill the cancer cells also kill healthy cells. According to the National Cancer Institute, "because bone-marrow cells also divide frequently, high-dose [chemotherapy] treatments can severely damage or destroy the patient's bone marrow. Without healthy bone marrow, the patient is no longer able to make the blood cells needed to carry oxygen, defend against infection, and prevent bleeding." Therefore, a treatment plan has been developed which helps the bone marrow regenerate more quickly after chemotherapy.
For many years, until about 10 years ago, the only way to replace the bone marrow killed by chemotherapy was through a bone-marrow transplant. Either the patient's own bone marrow or that of a family member or other matching donor would be "harvested" drawn out with a massive needle inserted into the femur as many as 200 times and then reinjected into the marrow following the chemotherapy treatment. In recent years, a much less painful procedure has been developed: peripheral blood stem-cell transplantation. The patient is given a drug, a growth factor, which stimulates the production of stem cells in her blood, which can then be separated out and stored for use following chemotherapy. The process is not much more complicated or painful for the patient than giving blood or plasma. The procedure is routinely administered on an outpatient basis, and unlike a bone-marrow transplant, no anesthesia is needed. It is the method of treatment now preferred by most oncologists, as it is much less invasive and carries fewer medical risks than a marrow transplant.
According to Dr. Steven Wolff, a board member of the Lance Armstrong Foundation and an authority on blood and marrow transplantation, peripheral blood stem-cell transplantation has been the preferred procedure for "autologous" transplants (of the patient's own stem cells) since the early Nineties, and that greater than 90% "probably closer to 98 percent" of all stem-cell collections are now done by means of peripheral blood.
For months, Mire tried to navigate the process for appealing the decision to decline coverage. A friend of hers, Linda Turner, offered to help because she is a nurse and had experience of her own in battling insurance companies. Turner became very frustrated with Amil. "Every time they asked for some documentation, I would get the doctors to fax it to them," Turner says, "but they always seemed to lose it or want some more or different documentation." Mire also sought help from the AISD benefits department. In April, she was told that the contract with Amil was the only insurance option for the next two years, and that there were no other options for her. Mire had been diagnosed in October, but six months later, she still had not been able to start any treatment. Her pain was getting worse, the symptoms of her illness worsened and the energy she should have been using to fight the cancer was being wasted in a bureaucratic nightmare. Finally, Mire's mother made a call to her state senator, Gonzalo Barrientos.
Sen. Barrientos made it a priority to advocate for his desperate constituent. He wrote to the president of Amil International and filed a complaint with the Texas Department of Insurance. When those efforts were unsuccessful, he suggested to his assistant Sylvia Brittain that she contact the folks at MD Anderson Cancer Center in Houston and ask them for their advice. Brittain found more than advice: She found a legendary patient advocate named Linda Kraft-Soniat.
Into the Maze
Kraft-Soniat's official title is Associate Director of Denials Management, but she is better known around the Cancer Center as "The Bulldog." Her job is to make certain that no patient is denied treatment just because her insurance company doesn't want to pay for it. Kraft-Soniat noticed a very unusual aspect of Mire's Amil policy it authorized bone-marrow transplantation yet specifically excluded stem-cell transplants. This contradiction made no medical sense. Bone-marrow transplantation and stem-cell transplants are functionally the same thing; even the "procedure code" used by a physician to identify a procedure for billing purposes is the same and does not differentiate between stem cells retrieved from bone marrow and those retrieved from peripheral blood.
Donald Coronado, the Quality Improvement/Customer Assistance Supervisor for Amil International's Austin office cited "privacy law concerns" for his refusal to answer questions requesting clarification of the policy discrepancy. However, in a letter to Barrientos, Coronado wrote, "Amil is not denying the requested procedure based on medical necessity, but rather on contract exclusion. ... The [policy] specifically excludes stem cell transplants." Coronado's letter does not address why the company authorizes bone-marrow transplantations much more risky because the patient must be placed under general anesthesia and excludes stem-cell transplants. Coronado acknowledged that Amil has no plans to change the exclusion. According to Barrientos' aide, Sylvia Brittain, Coronado told her that "we just have to draw the line somewhere." Brittain wonders whether the fact that a majority of physicians will recommend harvesting the stem cells from a peripheral source a very expensive procedure might have something to do with the exclusion.
But Dr. Wolff points out that while the peripheral blood procedure is not without risk or expense, it is generally less dangerous and less expensive than the mostly abandoned bone-marrow method. In theory, Wolff said, that should be beneficial to the insurance company as well. "Most insurance companies that I've dealt with," he continued, "are really good-intentioned, but sometimes they have issues about how rapidly they change with technological change. But this [procedure] is not brand-new stuff." That suggests that if expense is an issue in the Amil policy exclusion, it's as a back-door way to exclude transplantation coverage altogether.
Kraft-Soniat who reviews insurance policy coverages daily says she has never seen one with "this specific ... exclusion relative to the type of cells being used." Nor is she aware of any other school district in Texas using a policy that specifically excludes stem-cell transplantation. In other words, if Mire had been a teacher in San Antonio or Houston, she would have been able to receive stem-cell transplantation shortly after her diagnosis.
Luckily for Mire, Kraft-Soniat didn't stop fighting when Amil refused again to authorize treatment. She reviewed the Texas Retirement System's disability policy and found that it would authorize a stem-cell transplant. So, at the age of 48, Mire retired from teaching and was placed on the TRS disability policy. Although Mire knows that her retirement doesn't have to be permanent, she misses teaching. "I know I can come out of retirement," Mire said, "but I am very frustrated that I had to retire to get treatment." If the insurance company had not denied coverage of her treatment, "I could have gotten treated in December and the disease wouldn't have kept getting worse."
In early June more than eight months after her initial diagnosis Mire finally was able to travel to San Antonio (the closest facility for stem-cell transplantation authorized by her new insurance company) to begin the rigorous treatment procedure. She took the drugs that would stimulate the growth of stem cells, and went home to wait for them to grow. Later she returned to San Antonio for the harvesting of the cells and two days of chemotherapy. The harvested stem cells were returned to her blood stream to help regenerate the bone marrow destroyed by the chemotherapy. For the next few months, she will be monitored to ensure that her blood counts stabilize. The ultimate goal is for the cancer to go into remission.
Throughout this crisis, Mire's friends rallied around her. Lisa Rhodes a fellow runner and triathlete helped organize friends to deliver meals to Mire and her mother throughout the months of waiting. Rhodes also spearheaded an effort by a number of Mire's old running buddies to put on a fundraising race. The Circle of Hope Run Inspired by Elinor Mire was held on Saturday, June 12 at Walter E. Long Metropolitan Park (Decker Lake). More than 500 runners and walkers participated, and entry fees raised over $6,700. Many of the people signing up for the race wrote checks for much more than the $12 entry fee. Checks ranging from an extra $10 to the $1,000 donation by Mike Haggerty, owner of Thundercloud Subs, helped tip the total amount raised to over $13,000.
Just as important as the money (which will help Mire pay off more than $30,000 in debts accumulated over the past year) is the emotional boost that Mire received by being surrounded during the event by old friends and new well-wishers. She was a little frustrated by the fact that she couldn't participate in the run, as she had so many times before but she knew that she was on the road to recovery and that the circle of hope that her friends had initiated was spreading like ripples on a pond.
After the race, Mire met a 9-year-old girl named Mary, who has been battling depression. Mary was so inspired by Mire that she went home after the race and wrote "Never Give Up Hope!" on a piece of paper and taped it to her wall. Mire ever the teacher sees Mary as an example of the good that can come out of her terrible battles with her illness and the insurance system. She intends to continue her fight not only to get back her health, but to ensure that AISD teachers are informed about the limitations of their insurance policy. She sees it all as another opportunity to pursue her passion for education not all that different from teaching a child how to read.
health insurance, Elinor Mire, Austin ISD, cancer, amyloidosis, multiple myeloma, National Cancer Institute, stem cell transplantation, Steven Wolff, Lance Armstrong, Linda Turner, Gonzalo Barrientos, Amil International, MD Anderson, Linda Kraft-Soniat, Donald Coronado, Sylvia Brittain, Texas Retirement System, Circle of Hope, Lisa Rhodes