By Katie Kerwin McCrimmon
The mother laces her fingers through her daughter’s hands, holding her in her lap. She sings to calm her while a medical assistant straps a blood pressure cuff around the girl’s arm.
Amy gets nervous going to the doctor. Countless strokes that she suffered in utero 18 years ago have left her blind and severely developmentally disabled.
At just over 100 pounds, she is petite, but still much too big for her mother’s lap. Even so, her mom, state Sen. Irene Aguilar, a primary care doctor herself and a Denver Democrat, knows well how to soothe Amy. Distressed, Amy cups a hand over her ears and repeats a phrase that sounds like: “Id-it. Id-it. Id-it. Id-it.” Aguilar hugs Amy and centers her again. In a quiet voice you might use to settle a tired toddler, she asks: “Do you want mommy to start?”
Amy decides to begin, belting out a line from the Hokey Pokey. “You put your right…”
“Foot,” Aguilar answers without missing a beat.
Then Amy calls out the next few words: “In. You put your…”
This type of call and response song is one of the primary ways Amy communicates. She has a special song for each member of her family, including her aunts and numerous cousins who help care for her. When she senses footsteps coming into the room, she calls out “Mommy” or “Daddy” and starts singing their special song. It may not seem like much. But when you consider that Amy and her identical twin sister, Meg, had a 50 percent chance of dying before birth, they both live up to their middle names. Amy’s is Milagro, Spanish for miracle. Meg’s is Hannah, meaning gracious gift from God.
A rare type of twins, known as MoMo (for monoamniotic, monochorionic) the girls shared the same amniotic sac. This type of pregnancy is very dangerous since the babies’ umbilical cords often become hopelessly entangled and can cause death or disability.
At 18 weeks pregnant with a year-old son at home, Aguilar and her husband, Tom Bost, also a physician, learned about the scary complications they faced.
Their doctors offered a therapeutic abortion. But Aguilar and Bost decided they had been blessed with the medical skills and the finances to face whatever came their way.
Meg beat the odds. She is healthy and bright, an award-winning high school senior, poised to go to a top college, where she’s considering pre-med and a possible career with special needs children or Doctors without Borders. Amy faces a lifetime on Medicaid and forever will need extensive care and support. Amy and many of Aguilar’s neediest patients at Denver Health served as Aguilar’s inspiration when she suddenly jumped into politics in 2010 and was the underdog victor in a vacancy committee battle among six candidates to replace Sen. Chris Romer who resigned to run for Denver mayor.
The first in her immigrant family to make it to college, much less to medical school, and now the only practicing physician in the Colorado Legislature, Aguilar recently was elected to a new term and chosen by her peers as assistant majority leader of the Senate. She’s hoping to lead the Senate Health Committee.
Aguilar enters the 2013 session as one of the legislature’s most powerful voices on health issues, respected on both sides of the aisle and a leading Latina in the state. She plans to join Democratic colleagues in fighting to expand Medicaid to a greater share of the poor as planned in the Affordable Care Act, but undercut by the U.S. Supreme Court, which allowed states to opt out of expansion. Now governors and state lawmakers must decide how to handle Medicaid. Ultimately, Aguilar wants to ignite an even broader health revolution by bringing universal care to people throughout Colorado.
Undaunted by critics who say universal care is a pipe dream, Aguilar simply straps on her iPod and listens to one of her favorite tunes: “The Impossible Dream,” from the 1972 Don Quixote-inspired musical, “Man of La Mancha.” The lyrics spell out her determination: “To right the unrightable wrong….to reach the unreachable star….no matter how hopeless, no matter how far.”
In Aguilar’s mind, true health reform is both fiscally conservative and socially just.
“I don’t think everybody should get every single thing in health care,” she said. “But we need to give everyone access to the great cost savings of basic health care and figure out how we can do that as a state.”
And someone needs to speak out for the vulnerable, Aguilar says.
“We need the safety net for people like Amy.”
Granddaughter of Mexican sharecroppers
Irene Aguilar’s grandparents grew up in Mexico, then moved to Texas to pick cotton.
“They would work on this farm owned by a big white landowner. They were basically sharecroppers. They had a little house with no plumbing,” said Irene’s sister, Fran Aguilar Walendzik, a registered nurse who also lives in Denver. “Had it not been for our culture, I don’t know that (Irene) would have become a doctor.”
“In the Latin culture, we would serve our men first. My mother would say, ‘get an education so you don’t have to be waiting on these people,’” Walendzik said.
Their mother made it through the fifth grade, their father to third. Aguilar is the youngest of four girls, raised in Chicago where her father worked at a plant that processed steel and aluminum. Aguilar won a steelworkers’ scholarship to attend college at Washington University in St. Louis. She finished in just three years, then went on to the University of Chicago’s Pritzker School of Medicine.
“Irene was always a determined child. When she sets her sights on something, she pretty much has to do it,” Walendzik says.
Take the pea soup incident, for example. One day when Aguilar was about 4 or 5, pea soup was on the lunch menu.
“I remember picking up Irene from daycare and the nuns didn’t know where she was,” Walendzik said. “It turned out she didn’t like the pea soup so she started walking home by herself.”
Later, it was no surprise that Aguilar would fight to get fair treatment for Amy at a private Montessori school that was happy to educate Meg and her older brother, Jonathan, but did not want to accommodate Amy.
“They wouldn’t touch her even with a full-time aide. I felt insulted for all children. That’s why I went into policy,” Aguilar said. “I learned so much from other parents.”
Aguilar and Bost, who met while training together at the University of Colorado, found better educational options for their children, switching Jonathan and Meg to Colorado Academy and Amy to the Jefferson County Open School. She’s been in a fully inclusive program since kindergarten and will graduate in May.
Aguilar, meanwhile, became an activist.
She joined the Colorado Developmental Disabilities Council and later served on the vulnerable populations subcommittee for Colorado’s 208 Commission, an influential group that studied health care solutions and came up with many ideas later codified in the federal Affordable Care Act.
Bost has a nickname for his wife that reveals her tenacity. He dubbed her the “Mexican trekking monster” after one of their international mountain excursions to Nepal. Aguilar had heard about a legendary apple dessert high on the Annapurna circuit and fought her way up 4,000 vertical feet to taste it.
“When properly motivated, she can do almost anything, whether it’s health care reform or hiking for an apple pie,” said Bost.
Added her sister: “When she went into politics, I was a little surprised,” said Walendzik. “But if there’s anybody who could advocate on behalf of people and do it articulately, it would be Irene.”
Umbilical cords in a knot
Born eight weeks early on Nov. 30, 1994, the girls’ arrival revealed just how tenuous their survival had been.
As feared, their umbilical cords had twisted around each other multiple times. A haunting photo from the birth shows the cords in a tight knot.
After the girls arrived, an ultrasound found that Amy had been deprived of oxygen throughout the pregnancy.
“It showed multiple strokes. Her brain looked like Swiss cheese,” Aguilar said. “It was a miracle that she was even born.”
The first few days were touch and go. Aguilar and Bost named their girls right away in case one or both didn’t survive.
“We were documenting it, making it real,” said Bost, a specialist in pulmonary and critical care.
Neither girl could eat on her own at first. Amy’s lungs, like many preemies,’ were underdeveloped. A ventilator had to breathe for her. She has a type of cerebral palsy known as spastic quadriplegia, meaning that all four of her limbs are affected. She can walk with help, but has poor control of her muscles. She has seizures, cortical visual blindness and developmental delays.
The twins spent their first Christmas at Presbyterian/ St. Luke’s Medical Center. Meg came home first, then Amy. Then, the true insanity began.
“Amy was still on the feeding pump. They were eating every three hours because they were so tiny. We would trade off,” Bost said recalling one night when Irene nearly tripped over him as she handed off Meg in the middle of the night. He had fallen asleep on the floor in their study.
Very early in the twins’ lives, Aguilar and Bost received lifesaving advice.
“This will make or break your marriage,” one of their pediatricians said. “Get counseling.”
Both professionals and fellow parents urged Aguilar and Bost to get plenty of help and to give themselves breaks. The couple decided to spend hefty portions of their earnings hiring a team of au pairs and caretakers including loving cousins who would be kind and patient with Amy. They made it a priority to take amazing trips around the world and to go hiking and camping in Colorado’s mountains. They eventually moved from a Wash Park bungalow to a sun-splashed home in southwest Denver near the former Loretto Heights College. They remodeled much of the first floor to accommodate Amy’s wheelchair and expect that she can live there for the rest of her life.
With a large open kitchen and spacious adjacent dining room, the house also accommodates Aguilar’s extended family, which means frequent dinners for 30. In an essay for school titled “Chaos Theory,” Meg described her loud sister eating pancakes every day and perpetually listening to Raffi children’s songs while pets roam the house. Mexican food is often simmering and you know there’s a holiday when the babble of voices grows louder and “dozens of brown bodies cluster around the stove (distinguishable as female if they’re short and plump.) And it’s those days when you step into the house …and can’t help but think, ‘oh, so this is what it feels like to be loved.’”
Amy’s brother Jonathan, who is now in college, once described his sister as “shooting back Dr. Suess lines like a tennis ball against a brick wall…Amy who loves and needs people, and who is never quiet…who stretches vowels like the Play-doh in her hands.”
For the first days of her life, no one knew if Amy would live. Then, learning to drink from a bottle was a massive struggle. One of her aunts from Chicago, Tia Lupe, taught her that. Then came challenges in school. And now as Amy approaches her 18th birthday, her parents must arrange to be her legal guardians and contend with safeguarding her physically and financially in case something happens to them.
Amid all the chaos, her family revels in the joy that Amy can experience: rolling down hills, “like a misshapen ball that hasn’t yet let go of the luster of life,” as Jonathan once wrote, or screaming out “home” as she feels the car surging up the hill in her neighborhood. Meg calls her “Amy the Affirmator,” because she always tells people they’re “awesome.”
Then, there’s the singing. Always the singing.
Amy squeals with delight when her dad claps with her and recites the words to the Winnie the Pooh song, “The Wonderful Thing about Tiggers.”
“Their tops are made out of…” Bost says. “Rubber,” Amy answers.
“Their bottoms are made out of…” “Springs!” she screams.
“The most wonderful thing about tiggers,” Bost says.
“Is I’m the only one,” Amy answers and they both grin.
“Does it make her happy?” Aguilar says, then answers her own question. “Yes.”
“Is it bonding? Yes.”
Considering the function that Amy does have, her mom likes to say, “She fried a really good brain.”
“She only has so many tools in her shed,” added Bost. “The trick is to try to give her as many tools so she has a broader palette. She can only paint in yellow and greens.”
But, insists her family, she can paint.
Underdog victory launched political career
Aguilar’s political journey began with a book her husband gave her about Madeleine Kunin, who began as a state lawmaker in Vermont and eventually became its first and only female governor.
When Bost planted that seed, Aguilar had a straightforward response: “Yeah, you’re crazy.”
But she eventually cracked the book and began to consider politics. She wanted to wait until the girls finished high school. But then Chris Romer announced two years ago that he was leaving the Colorado Senate and Aguilar seized the opportunity to fight for his seat. She learned Romer was leaving on Nov. 6, declared her candidacy three days later and stunned political insiders when she won her seat on Dec. 13 and was sworn in to the Senate in January.
“It was really hard at first,” Aguilar said.
She had to rush to make arrangements with Denver Health for another physician to see her patients during the session. (An internal medicine doctor, Aguilar continues to see patients at Denver Health’s Sam Sandos Westside Family Health Center on Federal Boulevard when the legislature is not in session.)
In January, just as her first session was getting under way, a niece died from an accidental overdose. Aguilar got a horrible cold. Sick, exhausted and grieving, she then ran into a buzz saw of opposition from her own party when she tried to run a bill to set up universal care in Colorado. Fellow lawmakers wanted all the focus on passing bipartisan legislation for a Colorado health exchange, an online market for health insurance, as required under the Affordable Care Act. Drama over the exchange bill occupied nearly all the legislative session. Aguilar held hearings for her bill, but universal care became a footnote that session.
Sen. Betty Boyd, D-Lakewood, the co-sponsor of the health exchange bill, has been the informal dean of health issues in the Colorado Senate. Barred by term limits from running again, her term ends in December. When it came to health issues, Boyd felt that she was the realist and Aguilar was the idealist. Boyd doubted that universal health care would ever fly. But, she respects Aguilar and expects her to be a strong leader in the legislature.
“She knows health care from the inside,” Boyd said. “You can always count on her to have really good information.”
Boyd said that during her first year, Aguilar might have had a “slightly rocky start” because she hadn’t had the opportunity to build relationships. Nonetheless, fellow lawmakers on both sides of the aisle quickly started to listen to Aguilar and sought her testimony and expertise on health issues. She even happily dispensed health advice and strapped on her stethoscope to check blood pressures for colleagues at the legislature, warning them about the dangers of hypertension.
Aguilar has a calm demeanor that plays well with friends and foes alike. She listens intently and testifies in an even-keeled manner. It’s the same tone she uses with her patients and with Amy. Aguilar concedes that she may have learned patience from life with a disabled child. On the other hand, Aguilar is the first to say that she doesn’t like being told “no.” People who tell her that universal health care won’t work inspire her to try to convince them she’s right.
“We are already paying for this. Even people who say, ‘I don’t want to pay for health care’ say they do not want to let people die on the streets. If we’re going to pay for (care) anyway, we should sit down and find a rational way to do this.”
Rather than being angry at those who disagree with her, however, she tends to try to find common ground. If people show ignorance about children with special needs, for instance, Aguilar adopts a gentle approach.
“I forgive them for that,” she says. “A lot of people live incredibly sheltered lives.”
Republican lawmakers may not always agree with Aguilar, but many respect her.
Sen. Ellen Roberts, R-Durango, represents eight counties in the rural Four Corners area. She has been impressed with Aguilar’s sincerity and willingness to reach out. Politicians frequently say they want to learn about Roberts’ remote district. Aguilar actually got in the car with an aide and drove across the state this summer to attend medical meetings with Roberts and learn about rural health care challenges.
“I appreciated it. She went the extra mile, actually the extra 300 miles,” Roberts said.
“What’s unusual is that she came for policy reasons as opposed to political reasons,” said Roberts. “She actually wanted to know what it’s like. We’ve had a number of conversations about the differences on (health care) access and delivery in an urban vs. rural environment. She came to see what it’s like in my world.”
The chief problem in Roberts’ world is that many patients can’t find providers. So, even if they qualify for Medicaid or Medicare, many can’t find doctors who will care for them.
“It’s hit or miss,” Roberts said. Durango, for instance has a beautiful hospital with a full medical campus.
But, some tiny rural communities have extremely high poverty rates and no health providers.
“What I appreciate about Irene is her willingness to keep an open mind,” Roberts said. “She’s well known for her passion for a single-payer system. I think she understands that not everybody’s in agreement with her on that. But, it’s not stopping her from looking for constructive solutions that fit Colorado. Clearly there are areas where we don’t agree. But she finds those spots where we have agreement. That’s a real strength.”
Reviving universal care legislation
While many lobbyists and some fellow lawmakers will oppose her, Aguilar wants to find a way to pass universal care. Currently she is working with a coalition of activists from the Colorado Foundation for Universal Health Care to conduct an economic feasibility study on what it would cost to have universal care in Colorado. The Caring For Colorado Foundation has funded the study and results should be released in December.
Advocates for universal care expect the study will show that this type of system would save money in Colorado. And if that’s the case, Aguilar is eager to once again introduce universal care legislation. Other states including Vermont and California have explored single-payer systems. Health insurance companies in Colorado that also provide care like Kaiser Permanente and Rocky Mountain Health Systems would be part of the system. Other insurance companies would not, which means fights at the Capitol could be explosive.
“The companies that only make money by finding healthy people to insure are obsolete. That’s not what we need,” said Ivan Miller, chair of the board of the Colorado Foundation for Universal Health Care.
He believes business leaders, health care providers and patients all want a system that works better.
“All kinds of people realize that we could actually take care of everybody’s health in this state for less than we’re currently spending. The current system doesn’t make sense. We all have to get in the same risk pool and work together on this,” Miller said. “A single risk pool is the only system that’s going to save enough money so everyone can have health care.”
Aguilar’s husband shares his wife’s passion for a better system. Working in hospital intensive care units, he sees plenty of patients who have gotten lousy preventive care and end up in dire straits, costing the health system exorbitant sums.
Bost and Aguilar frequently tell the story of a family friend who was a successful acupuncturist but had no health insurance. The friend, who was about 60, didn’t have a regular doctor and didn’t think he could afford a check-up, but was feeling short of breath. So, he asked if he could come in after hours and see Bost. The man came. His blood pressure was “sky high.” Bost told him he needed care right away. The man didn’t get it. Two days later, he suffered a stroke and died within days. The needless tragedy still angers Bost.
“For want of seeing a physician regularly, he ends up spending 36 hours in an ICU and then dies. Do the math. It’s insane,” Bost says.
Aguilar sees common sense solutions that can prevent these kinds of tragedies.
To stay motivated, she listens to her iPod and has a poster on her office wall with a quote attributed to Mahatma Gandhi: “First they ignore you. Then they laugh at you. Then they fight you. Then you win.”
Says Aguilar: “If your conscience tells you it’s right, then you do it.”