Lawmakers urged to pay more for health insurance

Sunday, May 15, 2011

Freshman state Rep. Gerald Mullery said Pennsylvania lawmakers should contribute as much as he does toward their health care premiums, which is 10 times more than he has to.

Bucks County Republican sophomore Rep. Frank Farry would like to see fellow lawmakers kick in two times more than what Mullery wants, which is closer to the percentage that private employers require employees to pay.

But it remains to be seen if either will see the type of health benefits changes they've proposed, unless, as one suggested, people make their voices heard.

Mullery, D-Luzerne, and Farry, R-142, each have introduced legislation to significantly increase lawmaker contributions toward health benefits, including tying them to the cost of the plans.

The legislation isn't necessary to change the health plans or contribution levels. The five-member House Bipartisan Management Committee is responsible for making decisions about health benefits for House employees.

Earlier this year, the committee agreed to begin requiring House employees - who haven't contributed toward health premiums - to start paying 1 percent of their salary, which would ranges from $780 to $1,222 a year.

Lawmaker contributions start July 1, and other employees and retirees will be phased in before the end of the year. Senate employees have contributed 1 percent of their salary toward health premiums since 2007.

The annual cost of the House and Senate plans this year range from a low of $4,317 (individual)/$12,109 (family) to as much as $11,065 (individual)/$31,257 (family) for medical and prescription drug benefits alone. Employees also received taxpayer subsidized dental and vision care.

In the Senate, the nine-member Benefit Structure Committee on Management Operations is responsible for employee health benefits decisions. It's unknown if similar Senate legislation has been introduced to boost the employee contribution for premiums.

The bill that Farry introduced last session would raise lawmaker contributions to 20 percent of premiums over 10 years. The bill does not address raising contributions for other employees or retirees.

Farry, who has served in the House since 2008, is among a handful of lawmakers who contribute to the benefits premium now. He gives 1 percent of his salary, which works out to 11 percent of his individual plan premiums.

The gradual phase-in was Farry's attempt to draft a moderate bill that could generate support and pass the House, he said.

"As we can see what happened last session, with the limited support, and what's happening this session with the lack of cosponsors, at the end of the day, it has limited support in its present form,'' he said.

Farry's original bill had 20 cosponsors, roughly 10 percent of House members. They included three Bucks County representatives - Steven Santarsiero, D-31, Paul Clymer, R-145, and Marguerite Quinn, R-143 - and House Majority Floor Leader Rep. Mike Turzai, R-Pittsburgh, a Bipartisan Management Committee member.

The bill died in committee, and Farry has vowed to keep reintroducing it. So far, the latest version has 17 cosponsors, including Bucks County's Quinn, Scott Petri, R-178, and Katherine Watson, R-144, but not Turzai.

"It's unfortunate," Farry added. "Part of it could be I'm asking people to take money out of their own pocket."

Clymer believes support is there to pay more.

"I would say this, the members, I'm speaking for the Republican caucus, I would say, by and large, are not adverse to paying more in premiums and copays," Clymer said. "We have to give something, 1 percent, if they ask for more, I'd be glad to pay more."

Santarsiero, another who contributes 1 percent of his salary toward health benefits, said ultimately the Republican leadership controls what bills go to the floor for a vote.

"I'd hope Frank (Farry)'s bill is one they'd commit to running," he added. "The real question is, will there be a majority to pass the proposal, and I don't have a good feel for that right now."

Democrat Mullery said he has received "mixed" reaction to the bill he introduced in February that would require lawmakers to contribute 10 percent toward their plan premiums starting in January. His bill has only three cosponsors.

"I've taken some ridicule," said Mullery, a cosponsor on Farry's bill. "And I've also seen some semblances of support."

Mullery said that he voluntarily contributes 10 percent of the cost of his family health plan, something that his constituents regularly tell him they appreciate.

"The message I've been trying to deliver is that I certainly can't do it alone," he added. "If the people of the commonwealth aren't willing to send email or call their legislators, my bill won't get out of committee."

Jo Ciavaglia can be reached at 215-949-4181 or jciavaglia@phillyBurbs.com For the latest health information follow Jo on Twitter at twitter.com/jociavaglia

Premium coverage, little cost

Sunday, May 15, 2011 

What employer today offers family health plans with $4 copays to see a specialist, $6 copays for brand name drugs, $25 emergency room copays, no hospital copay or in-network deductible with employee contributions of less than $70 a month?

Pennsylvania's Legislature is the answer.

The Senate's choices include a medical and drug plan that costs more than $30,000 a year per employee with taxpayers picking up nearly all the premiums for the 360 employees enrolled.

House employees can pick among four medical plans, and haven't contributed toward the premiums, but will begin to contribute 1 percent of their salary later this year. Among the choices is a family plan that costs more than $20,000 a year when drug benefits are included.

The General Assembly's health benefits left insurance experts and benefits consultants nearly speechless. Such generous plans with low contribution rates do not exist in private industry.

"These numbers are just crazy," said Ross Schriftman of Ross Schriftman Insurance in Horsham. "This is really a way, way higher cost to the taxpayer than is really necessary."

Tom Getzen, a professor of risk, insurance and health management for Temple University's Fox School of Business, agrees. "Nobody costs that much. That is a very sweet contract."

Consider that federal employees pay more toward their health premiums. So do employees in most states.

The Legislature's benefits are even better than executive branch employees - including the governor - who have higher contribution rates for cheaper plans with slightly higher cost-sharing.

While private and many public employers are requiring workers to contribute more out-of-pocket money for health coverage, Pennsylvania's Legislature - which faces a $4 billion budget shortfall - has made virtually no changes to its medical plan designs in recent years. And the changes that were made mostly involved expanding coverage.

Technically, the Legislature's health benefits are decided by 14 lawmakers who serve on the Senate Benefit Structure Committee on Management Operations and the House Bipartisan Management Committee. The top nine and five Senate and House leaders, respectively, sit on the committees.

But at least two House lawmakers - a Bucks County Republican and a Luzerne County Democrat - believe the General Assembly needs a reality check. Each has introduced bills that would bring employee contributions more in line with what the average American pays.

"We should be contributing and contributing at the real world rate and that is not what we're doing," said Bucks County Rep. Frank Farry, R-142, whose bill would raise contributions to 20 percent of plan premiums over a 10-year period. "We are elected leaders. We need to lead by example."

High-priced plans

Under the current medical benefits contracts, annual premiums for medical and drug benefits combined range from more than $4,300 to more than $31,000 per state employee, depending on the chamber, the type of plan and the number of dependents. The totals do not reflect additional subsidized costs for dental and vision coverage.

All the plans include low employee cost-sharing, few restrictions and coverage for things like autism care services, infertility treatment and adult dependents until age 29.

The Preferred Provider Organization plans are the most popular with both chambers' employees, according to chief clerk responses submitted under Pennsylvania's Right to Know. But about one-third of all Senate employees and more than one quarter of House lawmakers are enrolled in indemnity plans, the most expensive choices.

Only two representatives and one senator do not take health benefits, according to the chief clerk offices.

All the options are expensive - for taxpayers - since contributions are tied to employee's salary rather than plan premiums, the standard that public and private employers commonly follow.

Senate employees and retirees started 1 percent premium contributions just four years ago. House lawmakers' 1 percent contributions don't kick in until July 1, with employees and retirees being required to contribute before the end of the year, House GOP leadership spokesman Steve Miskin said.

This year, the base salary for lawmakers is $79,623, also considered among the highest legislative salaries in the nation. Many lawmakers, though, did not take the automatic Cost of Living Adjustment and left their salaries at $78,314.

The 24 leadership positions pay extra, and the highest salaries are for the House speaker and Senate president pro-tem, who each earn $122,254 a year.

That means, once the House contributions start, most state lawmakers will pay less than $800 a year for their health benefits, which is less than the monthly premiums for most of the current plans.

Bucks County Rep. Steven Santarsiero, D-31, has voluntarily paid 1 percent toward his PPO family plan premiums since he took office in 2009.

Santarsiero said the 1 percent contribution is a start to bring the House in parity with the Senate; he also supports two House bills that would raise employee contributions to 10 percent or 20 percent of premium costs.

"We're paying far less. I think that is not right," Santarsiero added. "We should be paying more and we have to do our part. This all goes to where the Legislature can be saving money and cutting back."

changing times

Historically, public workers have received generous health benefits as a job perk, but Pennsylvania stands out even among other states.

In 2009, the average annual cost for an individual health plan for a public employee was $6,029 with the state paying an average of 89 percent of the premiums, according to the National Conference of State Legislatures.

The average family plan premium for state employees in 2009 was $13,992, and the average employee paid $2,324 - nearly 17 percent - of that cost, according to the Center for Financing, Access and Cost Trends at the U.S. Agency for Healthcare Research and Quality.

In many states, the legislative branch is treated the same as other public employees, said Richard Cauchi, health program director for the National Conference of State Legislatures. South Dakota and Wyoming do not offer health benefits to state lawmakers, but do cover their staffs.

In recent years, states have increased employee cost sharing, including contribution rates, but change is often incremental, Cauchi added. A state may lock into multi-year insurance contracts to limit cost increases, and employee collective bargaining agreements are often longer than one year.

To reduce costs, more states are pushing employee wellness programs, which provide incentives for leading healthy lifestyles, Cauchi said.

Pennsylvania's executive branch is among them, with about 53,000 employees - about three-quarters of those who receive health benefits - participate in a wellness program, said Dan Egan, press secretary for the Pennsylvania Office of Administration.

Participants complete an online health assessment and, based on the responses, are deemed healthy, at-risk or chronic. Employees in the latter two categories participate in telephone-based disease management programs, Egan said.

Since 2005, Pennsylvania's executive branch employees have contributed 3 percent of their salary toward health premiums. Employees hired after 2003 also pay a "buy-up" charge ($636 individual/$1,610 family), if they enroll in the PPO plan.

But employees enrolled in the wellness program cut their premium contributions in half, Egan said. Overall, executive branch employees contributed about 8 percent toward the $781 million annual health benefits costs last fiscal year.

old resistence

The Senate and House chief clerks declined to provide specific information about what changes are under consideration to reduce health costs.

The chief clerks serve as non-voting members on the benefit committees.

In the House, two medical benefits contracts - Capital Blue Cross, which covers most current and retired employees, and the Keystone Central HMO - expire in July 2012. The other legislative medical contracts expire this July.

The newspaper was unsuccessful in reaching House and Senate leadership members for interviews, after repeated requests through emails and voice messages left with their press secretaries.

The Bipartisan House Committee is "checking alternatives" to its University of Pittsburgh Medical Center HMO, but it's unclear if the plan will be renewed, said House Chief Clerk Anthony Barbush. The plan has 19 employees enrolled at a cost of $149,000 this year.

The House committee has started negotiations in anticipation of its 2012 renewal, and higher employee premiums and cost-sharing are on the table, GOP spokesman Miskin said.

The Senate has discussed combining the House and Senate medical benefits, the way it was done years ago, but, so far, it has been cheaper to go with separate contracts, Senate Chief Clerk Russell Faber said.

A review of the contracts, though, shows the Senate indemnity plans with drug coverage costs nearly $11,000 more a year than the House's indemnity plan. With PPO plans, there is a less than a $300 difference between the chambers for individual and family coverage.

The Senate management committee is considering a "variety" of health benefit changes, Faber said. The committee has analyzed the potential cost savings if it increased premium contributions and copays and other benefit design changes it might want to consider.

But he declined to provide a copy of the study or discuss its conclusions.

Jo Ciavaglia can be reached at 215-949-4181 or jciavaglia@phillyBurbs.com For the latest health information follow Jo on Twitter at twitter.com/jociavaglia

The greatest gift he never asked for

September 6, 2009

Doctors save patients every day. Rarely, is it the other way around. Even more rarely does a patient save the lives of two people she barely knows.

The bulky bandage caught Kim Myers' eye as she waited in a sedated fog about to undergo foot surgery in December 2007.

"What is that?" she asked her doctor.

Dr. Jay Schnitzer didn't like talking about his medical problems with patients. It seems unprofessional. He also feared that patients might be reluctant to have a sick doctor treat them.

Jay Schnitzer and Kim Myers

But the doctor didn't like lying to patients either.

"I have a slight kidney problem," he told Myers as the anesthesia kicked in.   

For nearly four decades, the Lower Southampton podiatrist has kept patients on their feet. At more than 300 pounds and diabetic, Schnitzer didn't let his size slow him down — until three years ago.

That's when he developed an irregular heartbeat as a result of a blood clot in his heart. Surgery removed the clot, but his kidneys failed and he developed end-stage-renal disease.

For more than two years, Schnitzer, 61, was tethered to a kidney dialysis chair. After an eight-hour work day, he'd spend another 31/2 hours undergoing the lifesaving treatment that removes toxins from the blood. The three-times-a-week regime left him exhausted physically and psychologically.

His name was placed on the waiting list for a cadaver kidney. That list has more than 78,000 names in the United States. A total of 16,628 kidney transplants were done in 2007. Every year, one out of every five dialysis patients in the U.S. dies.

Schnitzer likely faced a five- to eight-year wait for a cadaver kidney.

Pretty depressing, but the doctor didn't let it stop him. He continued working and performing surgery part time, though it required taking extra safety steps. If bacteria entered the dialysis port in his upper chest, it easily could have led to a dangerous infection.

Sometimes, he wore a Hazmat suit in the operating room. More typically, he'd protect the port with sterile bandages sealed with a clear membrane, which often left a noticeable bulge peeking out of his low-cut scrub shirts — like the one that Myers noticed.

DO YOU UNDERSTAND?
Two weeks after her surgery, Myers, 49, returned to Schnitzer's office to have the stitches removed. It was their fourth face-to-face meeting.

In other post-op visits, Myers had asked again about the nature of his kidney problem. Reluctantly, Schnitzer said he was on kidney dialysis.

His health crisis didn't disturb Kim. It inspired her.

"I want to test for you," she said.

She was offering him a kidney.

Stunned, Schnitzer's hands started shaking. Tears filled his eyes.

"Do you understand what you are saying?" he asked.

Yes, Myers said. She already had talked it over with her family doctor.

Her offer deeply touched Schnitzer, but he didn't take it seriously. How could he? He graciously declined.

But Kim kept pushing.

"I don't think he really believed me," she said. "I think he thought I was being polite,"

The Bensalem mother of four was familiar with the physical, emotional and financial hardships of dialysis. Her mother-in-law was undergoing dialysis when they met. She later died.

Myers has also experienced the kindness of strangers, when she was a struggling single mom trying to make a better life for her family.

Schnitzer is one of those rare people, Myers said. He would walk into a room and fill it with light, even as he was cheating death.

"I don't mean to sound morbid," she said. "He just walked around like he was life itself."
At every follow up visit, she kept bugging the doctor to let her get tested as a potential donor.

"My mom said, "Test me, too,' " Myers recalled.

A BIG DECISION
If he was going to consider transplant surgery at all, Schnitzer knew he needed to lose at least 100 pounds. He underwent weight-loss surgery in June 2008 and dropped 85 pounds in four months. He has since dropped more than 130 pounds.

When Myers saw the slimmed-down doctor, she asked him again, did he want her kidney?

If she really wanted to do it, Schnitzer did, too.
What followed were a series of 18 medical tests, including blood work, tissue typing, colonoscopies, and a mammogram for Myers. Living donors must be in superhuman good health, said Joell Alter, a physician liaison with the Temple University Health System.

There are two critical factors with living kidney donations: blood type and antigen match. Antigens are genetic markers on white blood cells that signal antibodies to help the body fight infection.

Like 40 percent of the U.S. population, Schnitzer is O-positive. So is Myers.

After six months, the test results were in. They were not good.

Schnitzer and Myers were genetically incompatible.

Like three out of 10 kidney-transplant candidates, Schnitzer tested positive on a blood test called a 
Panel-Reactive Antibody — meaning the antigens in his blood were prepared to attack foreign tissue.

A patient is considered sensitized if the PRA is greater than 20 percent.
Schnitzer's PRA was 94. That meant only 6 percent of the world population would be a good antigen match reducing the chances of organ rejection, said Dr. John Daller, a transplant surgeon at the Temple University Hospital.

High levels of antibodies against foreign tissue make it harder to find a kidney; sensitized patients may wait three to four times longer for a compatible donor kidney.

This story could have ended there in a doctor's office at Temple University Hospital.

Instead, a more amazing story began.

"I'M GAME'
Temple University Health Systems, Schnitzer's alma mater, had joined a unique living donor program called the National Paired Kidney Donation Network. The organization uses a complex software program to find matches for incompatible living donor and recipient pairs.

The Paired Kidney Donation Network began in 2002 as a statewide paired donation consortium founded by kidney transplantprograms in Ohio.

Today, 140 of the 234 U.S. kidney transplant hospitals are part of its network, said Teresa Braun, the network's executive director. Locally, that includes Albert Einstein Medical Center, Thomas Jefferson University and Hahnemann University hospitals.

Would Myers and Schnitzer be interested in entering the network's database?

There are about 200 donor-recipient pairs in the registry; most are friends or relatives of the recipients, Braun said. At least 20 altruistic donors are in the process of being added to the registry. 

New software will allow the network to perform two-way and three-way matching involving up to four pairs of people at the same time, Braun said.

How it works is like this: Recipient A is compatible with Donor B and Donor A is compatible with 
Recipient B, so the two people who need kidney transplants can get them, if the donors exchange kidneys.

So if Myers agreed, she'd give her kidney to a complete stranger, whose incompatible donor would give a compatible kidney to Schnitzer. Myers also would agree to travel to where the other donor lived to undergo the surgery.

Will it mean Schnitzer would get a kidney quicker? Myers wanted to know.

The answer cemented her decision.

"I'm game."

SHE'S MY SISTER
The doctor and patient entered the database at an ideal time, right before a quarterly match run. 

About 48 hours later, a potential pair was found in Troy, Ohio, about 75 miles from Cincinnati, where 
Myers grew up.

The other donor candidate was a 28-year-old woman. The recipient: her 51-year-old mother, whose previous kidney transplant had failed.

All four donor-match candidates had O-positive blood types; Myers was a good antigen match for the Ohio mom. Equally as important, the young Ohio woman was a negative cross match with Schnitzer, meaning he would not reject her kidney.

About 35 hours before the transplant surgeries, Schnitzer spoke on behalf of the Paired Kidney Donor Program Network before doctors at the Gift of Life Donor Program, a nonprofit organ and tissue donor program serving the Philadelphia region.

Schnitzer said he believes the network will change the face of living kidney donations.

"The nightmare of dialysis is more than you can imagine," he said. "It [the paired program] is hope for people. Now there is another option."

Since the first network paired kidney exchange in 2004, about 55 others have been performed— more than half of them in the last 11 months, Braun said. Temple University performed its first paired kidney transplant in December. Schnitzer was the second one.

The twin surgeries took place June 25 in Cincinnati and at Temple University Hospital. Paired exchange surgeries not only take place on the same day, but at the same time. The first incision is made simultaneously in the patients because donors can change their minds up until anesthesia is administered, Braun said.

As surgery day grew closer, Myers grew more nervous. Her family supported her donation decision, though her husband was more scared than her. Myers says she never considered backing out.

"I knew I would do it," she said.

Yes, people don't understand how she could offer her kidney not to one, but essentially to two, strangers. To Myers, it made perfect sense.

"Wouldn't you? If you had the opportunity to save a life?" she recently said. "To be honest with you, I believe a lot of people out there who would do it, if they knew it wasn't that hard to do; knowing who it was made it even easier."

Two months after the transplant, Schnitzer's creatine level is considered normal, meaning his body isn't rejecting the new kidney. Follow-up visits to Temple Hospital have been reduced from three times to once a week. Every day, he feels stronger.

This week, he plans to return to seeing patients.

Schnitzer has already received a note and family photos from his Ohio donor; Schnitzer has written a long letter back, including his family photos.

Plans are in the works for the four to reunite in Ohio.

"I am thrilled. It's like my life is back," he said. "I have a second life and it is like, "Whoa. I am profoundly lucky.' Kim is truly my sister."

Jo Ciavaglia can be reached at 215-949-4181 or jciavaglia@phillyBurbs.com; twitter: @jociavaglia

Christina finds her voice

Posted: May 23, 2010

In an emergency room earlier this year, a young woman listed her symptoms, then explained why, if a CT scan were done, doctors would see that half her brain is gone.

The note-taking nurse nonchalantly nodded before mentioning how, years ago, she read about a little girl who had the same surgery.

That's her, the woman's mom replied.

The little girl with half a brain is still how many people remember Christina Santhouse.To some, it's who she will always be.

Christina Santhouse in her student teaching assignment

Christina is 23 now. Today, she graduates with a bachelor's degree in health sciences and a master's degree in speech and language pathology from a small private Catholic liberal arts college near Wilkes-Barre. She plans to become a speech therapist.

A fitting career choice, since the Bristol Township resident has found her voice again. 

The one she hasn't heard since she was 8 when she contracted a rare childhood infection.

Within six months, violent seizures that shook her body more than 100 times a day forced her into a wheelchair. The only cure was the scariest operation imaginable.

Doctors removed the right half of Christina's brain to stop Rasmussen's encephalitis?from first paralyzing, then killing her. She was the 59th child ever to undergo the last-resort surgery at Johns Hopkins' Children's Center in Baltimore.

The surgery saved her, but it took the only life she knew. Her left arm was left mostly paralyzed. She lost peripheral vision in one eye. Her left leg was crippled. It also killed her self-confidence.

She became the little girl with half a brain and an uncertain future.

The right side of the brain controls thinking skills such as problem-solving, reasoning, memory, organization and problems with communication. In most cases, once removed, the remaining healthy brain takes over the tasks of the missing side.

But that transfer isn't automatic or 100 percent guaranteed.

Christina would have to re-learn the most routine activities people do without giving them much thought. And some things, doctors warned, she'd probably never do again.

Their caution was understandable. In 1996, people didn't know what long-term outcomes to expect with a surgery that today remains a rare, last option. So they didn't set such high expectations.

"They were assuming that it wouldn't be possible," Christina says. "But I don't stop at "No.' "

An obstacle is only an untried opportunity, something life has plenty of. Not that turning obstacles into openings is simple or painless, but most people never saw Christina's struggles, only her successes.

No one would think less of her achievements if she took an easier way.

But shortcuts aren't her style. They only make you stick out, when all you want to do is fit in.

Besides, her brain works fine. Just differently than yours.

FEELING DIFFERENT

Christina Santhouse before the surgery

Looking at Christina, you see a woman with sunshine-colored hair, eyes like the spring sky and an ice-melting smile. Maybe you notice her left arm doesn't move and she walks with a slight limp.

Physically, Christina hasn't changed much over the years.

At barely 5 feet tall, people still mistake her for a kid — the nickname stepdad Albert "Pops" Catarro still uses.

Not long ago, she went to a chain restaurant near her college wearing a baseball cap. When she sat down, the waitress asked if she wanted a children's menu.

In a way, Christina had two childhoods.

Lynne Catarro doesn't remember her daughter before she got sick.

That girl — the standout soccer player, popular student and Brownie who was halfway to a green belt in karate— died a long time ago, she says.

The first few years after the surgery, Christina's personality changed something that Lynne, a special education teacher, expected. People with traumatic brain injuries — even as a result of surgery — often have changes in behavior, personality, moods and even sense of humor, doctors and therapists say.

Christina became more stubborn, impulsive and withdrawn, Lynne says.

She had the same smile, though.

"I really grieved who she was and rejoice in who she became," Lynne says.

Following her surgery, Christina faced months of healing and rehabilitation. She had to adjust to a new body that didn't work the way it did before.

"You have to figure out who you are again," Christina says.

She had to learn how to sit up, walk, speak and learn in new, unfamiliar ways. Try fixing your hair, folding clothes, using a knife and fork, fasten a bra, even putting on socks using only one arm. See how long it takes to finish. How fast you get tired.

Two months after surgery, she returned to school part time, but the learning never stopped. At home, her parents turned the ordinary into a lesson. A pizza dinner was a chance to reinforce fractions.

Every night, Lynne would re-teach Christina the day's school lessons to reinforce them. Christina would re-write the assignments, use flash cards, read the textbook, listen to the lesson on tape — and then read it again.

Every special education planning meeting, Christina was there. Lynne insisted on it. Why shouldn't she have a say in her education. She had to learn how to speak up for herself.

Besides, how was Lynne supposed to explain to teachers how Christina tied her shoe one-handed? 

She didn't know. Christina did.

One memory that often repeats in Lynne's mind is the first day that her daughter came home from a math tutoring lesson.

"Mom," Christina said, "I'm not the only one who needs help in math."

Christina made the honor roll throughout high school, but Albert Catarro admits the family worried that college wasn't in Christina's academic future. When she was accepted, they didn't want their fears holding her back.

"You hoped and pushed, but there is a lot of doubt," he says. "It was a hard time to go through."

At Misericordia University, Christina skipped the parties. She took summer classes. She studied, studied, studied. She made the dean's list every semester.

"She worked as hard as anybody I've met," Albert says. "She always thought ahead, anticipated things and worked hard."

Academically, Christina shined. Socially, she often stalled.

Christina Santhouse on her high school bowling team

After Christina got sick, people were afraid of her. Her social circle shrank to a handful of lasting friends. One parent told Lynne that her daughter couldn't play with Christina anymore. Parents worried her illness was contagious. It's not.

Doctors are unsure what causes Rasmussen's. Some believe it may be autoimmune-related. The brain becomes chronically inflamed, destroying brain cells. Untreated the disease literally eats the brain.

Growing up, Christina was painfully self-conscious of her body. She was the only player on her soccer team that wore a helmet; she replaced her favorite sport in fifth-grade with one-handed bowling. Her paralyzed arm and leg slowed her down and made her stand out.      

She looked different at that age when girls worry about their appearance enough without the added burden of orthopedic accessories and everyone at school knowing that you're that girl with half a brain.

Social awkwardness is one reason Lynne wanted her only child to attend a college away from the home — and the parents who sheltered her. She had to learn how strong she is.

At Misericordia, for the first time in a long time, Christina was just another student. No one on campus knew her life story before they knew her.

Other than an episode at the freshman picnic, which a local TV news crew crashed seeking an interview, she led a typical college life with roommate dramas, study anxiety, new found freedoms and responsibilities like teaching girls in her dorm how to do laundry.

She joined the campus ministry where, in her senior year, she was picked as one of its leaders. She served as a peer advocate for freshmen and an orientation leader. She joined the National Student Speech, Language and Hearing Association.

At college, people didn't question why she limped or what was wrong with her arm. Not right away.

"If they asked me, they knew me already, so they were interested in me," Christina says.

People she doesn't know well still ask what happened to her. With them, she simply says she broke her arm or sprained her ankle skiing.        

HER VOICE

That Christina pursued a career that involves speaking surprises no one who knows her. She first talked about her life in fifth grade before an audience of aspiring teachers.

Over the last 15 years, she has been interviewed for TV shows, newspaper and magazine articles; she has spoken at schools and professional conferences like the presentation on hemispherectomies and their effect on language skill development she made at a national conference of speech and language pathologists last November.

Truth be told, Christina once hated public speaking. The attention made her uncomfortable.

But Lynne believed it was important she share her story. It reminded people that differences, whatever they are, don't make you less human. They make you more unique.

Lynne also knew that talking would help Christina find her voice.

Now, Christina will help others find theirs.

On a sunny spring school day, Christina spoke in tongue-twisters.

This particular morning, her focus is "S" sounds with her students at Oliver Heckman Elementary School in Middletown, one of three local schools where she does graduate fieldwork.

She sees one or two students typically in 30-minute intervals. They usually play games like the one Christina invented the night before.

Pick a card out of the bucket. Say the word, nice and slow. Use it in a sentence. Decide if the word belongs in the spring, summer or both. Finally, they use the word in a sentence again and include the word "summer" or "spring."

Second-grader Matt Klinewski pulled out his word.

"What did you find?"

"Thee-weed."

"Push up the tongue, pal," she said, pointing her index finger up.

"Seaweed is in the ocean in the summer," Matt said.

"Sssssummer," Christina replied, again, pointing up her finger.

Another girl rushed through her syllables. Her tongue flew forward creating a "th" sound.

Slow down, Christina told her.

One girl picked a card with a picture of sandals.

"Can I say flip-flops?"

No. How many "S" sounds are in sandals?

Two, she answered.

"I want to hear both of them."

Christina did, rewarding the girl with a high-five.

Speech therapy wasn't the first career Christina considered. She wanted to be an occupational therapist but lacked the sheer physical strength the profession requires.

A high school career test recommended she pursue speech and language pathology, social work or become a nun. Speech therapy interested her the most. She knew how frustrating it is when you can't express yourself.

In her sophomore year, Christina was accepted into Misericordia's speech language pathology program, but when she got a 77 on her first test, an instructor suggested that she should let him help her pick another major.

(This wasn't the first time people doubted her. Years before, at a high school open house, an instructor who recognized Christina's name told her parents to take her home. She said the only career she'd have is answering telephones.)

Christina politely rejected the professor's advice. Speech is the career she wanted.

"He didn't know who he was messing with," she says.

She studied harder. She stayed after class. She went to see the professor during his office hours. She sought tutoring. She passed the class.

Last December, Christina finished her course work and next started graduate fieldwork through the Bucks County Intermediate Unit. She has a caseload of 75 children — 50 at Heckman alone, where her supervisor is speech therapist Pat Mervine.

During her senior year of high school, Christina volunteered after school helping Mervine work with students who had speech and language difficulties. The experience cemented her career path.

Mervine kept in touch with Christina while she was at college. When Christina asked to do her clinical experience with her, Mervine didn't hesitate.

Christina is among the best student clinicians she has worked with, Mervine says. Her professionalism is impeccable. She arrives at Heckman an hour early, so she has time to catch up with the piles of paperwork that come with the job.

"She basically comes in with the custodian," Mervine says.

Christina creates games that assess students' speech and language progress, as well as keep the kids interested. Interest is critical when the goal is completing 50 to 70 sound drills each session.

The time she spent on the other side of the therapy table as a child will benefit Christina as a speech therapist, Mervine believes.

The kids she has worked with now have mild to moderate problems. But she could be assigned students with profound disabilities, where she'll face parents who may be having trouble dealing with their child's challenges.

"She will bring something a little different because she has been there," Mervine says. "She certainly knows what to expect."

Sometimes, her students ask what happened to her arm.

She used to just change the subject. But lately, she'll tell them her arm was injured during a surgery and the brace helps it, much like when people wear glasses so they can see better.

QUALITY OF LIFE

Last week, Christina started an internship at St. Mary Medical Center in Middletown where her supervisor is Loretta Dugan, a senior speech pathologist who was part of the hospital team that worked with Christina for two years after her surgery.

As a child, her speech trouble involved higher-level cognitive functions: memory, attention span and her ability to focus on a task, Dugan says.

"In an 8-year-old, that is hard on a good day," she says. "Today, she will say to me, "I know I was tough,' and I'll say, "I know. That is what got you through.' "

At St. Mary, Christina will work directly with stroke patients, traumatic brain injuries, oral cancer patients or people who have trouble eating and swallowing, Dugan says. She'll diagnose and treat communication disorders and educate patients and their families about treatment options.

The relationship between speech therapist and patient is an intimate one, Dugan says. She also believes Christina will offer patients compassion, empathy and firsthand knowledge.

"She'll bring that experience and more," Dugan says.

Specifically, she brings hope where people may feel there is none.

Just look at her, Dugan says: "She is the possibility."

Christine isn't the first hemispherectomy patient who has graduated college, but she likely is the first to earn a master's degree, according to Dr. Patti Vining, a professor of neurology in pediatrics at the Johns Hopkins Children's Center, who is familiar with Christina's case.

Less than a half dozen former Hopkins patients have achieved it among the 130 who've undergone the radical surgery there, Vining says.

"A small handful, but a good handful," she adds.

As part of a quality-of-life study, Hopkins researchers are following hemispherectomy patients as they move into adulthood, Vining says, and the initial data could be ready next year.

"We need to understand what the full outcome is," she says. "Are they getting advanced degrees? Are they marrying and having children? If others aren't doing well, what help do they need?"

Lynne Catarro still gets calls from parents facing the same scary choice that she did. The questions families have don't change. Mostly, they want to know how Christina has thrived.

Christina was lucky, Lynne says. Lucky her parents are educators who know how the system and education laws work; lucky she was right-handed; lucky her grandparents knew how to research therapies and treatment options; lucky she had a community that supported the family.

Most importantly, she was lucky that people around her refused to let her give up. They pushed her. 

They encouraged her. They let her fail, so she'd know the feeling of overcoming a challenge.

"You can't say no, even if in the front of your mind you're thinking, "The doctor says it can't happen,' " 

Lynne says. "Being submissive was never a help."

On a recent morning, Lynne walked past her daughter's room and saw the dresser and bed had been rearranged.

How did you do that?

Christina replied using her hips and thigh for leverage.

Other times, Lynne passes the bedroom and sees Christina cutting pieces of paper for the sound 

games that she uses — scissors in one hand, the paper gripped between her toes.

How much faster and easier would it be if Lynne just cut it out for her?

But Christina won't bite, even when Lynne offers.

"I remember her filling out the application for college. Now, she is filling out her application for a job. 

She is exactly where she is supposed to be in life," Lynne says. "Who knew what you could live without?"

SO BE IT

Christina understands that she will never understand why her life unfolded the way it has. Some things people aren't meant to know. So be it.

Life isn't easy for most people. Just do your best with what you have.

Sometimes, she wonders what her life would have been if she never got sick. But then her mom wouldn't have taken a leave of absence from her teaching job and they never would have met Albert.

Besides, right now, her life is pretty awesome.

She is walking better since she recently started using a wireless, electronic stimulator device on her leg that treats people with a condition called foot drop, which happens when a person can't lift the front part of the foot.

Besides collecting two college degrees, she received one of the four prestigious speech and language pathology awards given to Misericordia graduates. She passed the state teachers' certification. She is job hunting.

There is nothing she can't do.

Except, she says, scratch mosquito bites on her right arm.

Jo Ciavaglia can be reached at 215 949-4181 or jciavaglia@phillyBurbs.com or twitter: @jociavaglia