Minnesota Health care News June 2011

June 2011 • Volume 9 Number 6

PodiatryKenneth Ammons, DPM

Rare-diseaseresearchSen. Al Franken

NeurologySpecial Focus

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Advisory Board: Minnesota Medical Association (MMA), Minnesota Hospital Association (MHA), MinnesotaMedical Group Management Association (MMGMA), Buyers Health Care Action Group (BHCAG), MinnesotaBusiness Partnership (MBP), Minnesota Healthcare Network (MHN), Advocates for Marketplace Options forMainstreet (AMOM), Minnesota HomeCare Association (MHCA), Minnesota Physician-Patient Alliance (MPPA),Physicians Service Network (PSN), Minnesota Center for Rural Health, and Minnesota Council of Health Plans.

Minnesota Health Care News is published once a month by Minnesota Physician Publishing, Inc. Our addressis 2812 East 26th Street, Minneapolis, MN 55406; phone (612) 728-8600; fax (612) 728-8601; [email protected]. We welcome the submission of manuscripts and letters for possible publication. All viewsand opinions expressed by authors of published articles are solely those of the authors and do notnecessarily represent or express the views of Minnesota Physician Publishing, Inc., or this publica-tion. The contents herein are believed accurate but are not intended to replace medical, legal, tax,business, or other professional advice and counsel. No part of this publication may be reprinted orreproduced without written permission of the publisher. Annual subscriptions (12 copies) are$36.00. Individual copies are $4.00.

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PUBLISHER Mike Starnes [email protected]

EDITOR Donna Ahrens [email protected]

ASSOCIATE EDITOR Martha Malan [email protected]

ASSISTANT EDITOR Scott Wooldridge [email protected]

ART DIRECTOR Elaine Sarkela [email protected]

OFFICE ADMINISTRATOR Juline Birgersson [email protected]

ACCOUNT EXECUTIVE John Berg [email protected]

ACCOUNT EXECUTIVE Sharon Brauer [email protected]

www.mppub.com

JUNE 2011 • Volume 9 Number 6

INTERNATIONALMEDICINEGlobal healthBy John R. Finnegan Jr., PhD

CALENDARDystoniaAwareness Week

SPECIAL FOCUS:NEUROLOGYMultiple sclerosisBy Randall T. Schapiro,MD, FAAN

StrokeBy Matthew Ostrander, MD

Young-onsetAlzheimer’s diseaseBy Terry R. Barclay, PhD

PEDIATRICSPain and palliativecare for childrenBy Stefan J. Friedrichsdorf, MD

COMMUNITY HEALTHTake charge, live wellBy Pamela Van Zyl York, MPH,PhD, RD, LN

8 PERSPECTIVE

10 QUESTIONS

7 PEOPLE

NEWS4C O N T E N T S

Kenneth G.Ammons, DPM

HealthEast

Matt Schafer

Minnesota PatientAdvocacy Coalition

RESEARCHFighting rare diseasesBy Sen. Al Franken

TAKE CARECan arm-cyclingreduce leg pain?By Diane Treat-Jacobson,PhD, RN

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MINNESOTA HEALTH CARE ROUNDTABLEMINNESOTA HEALTH CARE ROUNDTABLE

Background and focus:Created as part of nation-al health care reform,accountable care organi-zations (ACOs) are nowpart of every health carepolicy discussion. Asdefined by the 111thCongress, ACOs areorganizations that includephysicians, hospitals, andother health care organi-zations with the legalstructure to receive anddistribute payments to par-ticipating physicians andhospitals to provide carecoordination, invest ininfrastructure and redesigncare processes, andreward high-quality andefficient services.

Exactly what this meansis unclear, and a confusing

array of levels and qualifications for ACOs has been proposed. With2012 as a start date for Medicare reimbursement through ACOs,Congress is developing firm definitions at this time. Some say ACOsturn physicians into insurance companies; others say they are a wayfor physicians to take a leadership role in fixing a broken system. Ashealth care organizations race to join, create, or redefine themselvesas ACOs, they all face more questions than answers.

Objectives: We will review the history, goals, and rationale behindthe ACO model. We will review the latest federal guidelines definingwhat an ACO can be. We will discuss how the ACO will affect healthinsurance companies, employers, and the pharmaceutical industry.We will illustrate what must not be allowed to happen if the modelis expected to succeed. We will examine who decides if ACOs aresuccessful and how those decisions will be made. We will explore whyso many people, representing very different perspectives on healthcare, are opposed to the idea and what can be done for it to achieveits best potential.

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Please send me tickets at $95.00 per ticket. Mail orders to MinnesotaPhysician Publishing, 2812 East 26th Street, Minneapolis, MN 55406.Tickets may also be ordered by phone (612) 728-8600 or fax (612) 728-8601.

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AccountableCare

OrganizationsAccountable to Whom?

Program AspiresTo Reduce StigmaOf Mental IllnessTwo health organizations havelaunched a program to fight thestigma of mental illness in thehospital setting.

The National Alliance onMental Illness (NAMI) Minnesotaand HealthPartners will worktogether to change the hospitalenvironment for patients withmental illness and make the inpa-tient experience more positive forpatients, as well as for their fami-lies and friends.

Sue Abderholden, executivedirector of NAMI Minnesota,notes that the stigma againstmental illness can seem an over-whelming problem, but focusingon a patient’s hospital experiencecan be a good place to startchanging attitudes. “People havebeen doing anti-stigma cam-paigns for years,” she says.“While we’ve made some prog-ress, I think we need to startat the beginning, with people’sexperiences.”

Traditionally, Abderholdensays, the hospital experience formental patients has been moredifficult than it has to be. Limitson visiting hours, lack of empathy,and different rules for mentalpatients as opposed to other med-ical patients all wear on patientsand families.

“What we see is that whenpeople enter the mental healthsystem is when they feel moststigmatized,” Abderholden says.“If we can change how peoplefeel about their first inpatient[experience] … then that mightbe one way to start breaking thatdown.”

Under the new partnership,HealthPartners will give NAMI a$100,000 grant to fund a full-timeposition and develop severalstrategies to reduce the stigmaof mental illness in a hospitalsetting. One of the goals is tomake family and friends feelwelcome to visit patients withmental illnesses.

The program will start atRegions Hospital in St. Paul, butNAMI hopes to expand it to other

East Metro hospitals and eventu-ally throughout the state.

According to Abderholden,the campaign could be comparedto how patients’ experiences inmaternity wards have changedover time. “They were sterile, itwas really medicalized; and theneveryone decided to make it amuch nicer experience.You couldbring in family and friends,” shesays. “In a way, that’s what we’retrying to do here.We’re really try-ing to change what it looks like tobe in an inpatient psychiatric unit,and what it feels like.”

Parents MakingPoor Health Choices,Researchers FindA recent University of Minnesotastudy found that being a parentcan lead to unhealthy choices.

Researchers led by JericaBerge, PhD, of the University ofMinnesota Medical School, foundyoung adult mothers had higherbody mass index (BMI) and poordietary intake compared to young

adult women without children.Young mothers also reported hav-ing a higher daily intake of sugar-sweetened drinks, total calories,and saturated fats, compared toyoung women without children.

Both mothers and fathers par-ticipated in less physical activitythan nonparents, but no differ-ence was found in BMIs betweenfathers and men without children,the researcher say.

“We don’t want to blame par-ents, we want to support them,”says Berge. “This study demon-strates the need to support andencourage mothers and fatherson their quest to remain healthywhile balancing parenting de-mands and other life stressors.”

Researchers say children arelikely to mimic the health choicesmade by their parents, so thesefindings are significant for theirimpact on children as well.

Berge says there are a num-ber of steps parents can take toimprove their health and nutritionchoices. Parents should not feelobligated to finish food that chil-dren leave on the plate, she says.

N E W S

4 MINNESOTA HEALTH CARE NEWS JUNE 2011

To avoid wasting food, refrigerateit and save it for later. Parentsshould also avoid buying sugary,high-calorie beverages marketedtoward children. And Berge rec-ommends more walking and ac-tivity for families, rather than sit-ting in front of theTV after dinner.

Physician PracticesPack EconomicPunch, Report SaysA new report from the AmericanMedical Association and theMinnesota Medical Association(MMA) finds that physician prac-tices contributed $16.3 billion tothe state’s economy in 2009.

The report looked at the eco-nomic impact of office-basedphysicians. MMA officials say thatcategory consists of clinic physi-cians and excludes those who arenot in active practices, are prima-rily researchers, or are full-timehospitalists.

According to the report, in2009 Minnesota had 11,688 office-based physicians, accounting forapproximately 84 percent of ac-tively practicing physicians in thestate.These practices supported67,483 jobs, based on the total ofdirect and indirect positions. Onaverage, the report says, eachMinnesota office-based physiciansupports 5.8 jobs, including his orher own.

“Although physicians areprimarily focused on providingexcellent patient care, physicianoffices and the jobs and revenuethey generate are significantcontributors to state economies,”says Patricia Lindholm, MD,MMA president. “This study illus-trates what people in GreaterMinnesota already know, whichis that having physicians not onlyhelps the health of patients, butalso helps the economic health ofcommunities.”

The report found that office-based physicians supported $12.1billion in wages and benefits, andgenerated $761 million in localand state taxes. During the sameperiod, Minnesota hospitals gen-erated about $8.4 billion in wagesand benefits; nursing homes and

residential care facilities, $3.5 bil-lion; and colleges, universities,and professional schools, $1.6 bil-lion.

Physician groups have usedeconomic impact data to arguethat the state should minimizebudget cuts to health care pro-grams. “When you consider thatphysicians, nursing homes, andhospitals support about $25 bil-lion in wages and benefits, takingmore than $2.5 billion out of thestate’s health care economy, asGOP lawmakers are proposing todo, is obviously going to causefinancial hardships for theseproviders and the communitiesthat rely on these jobs,” says DaveRenner, MMA’s director of stateand federal legislation.

HIV Cases Drop,But Overall TrendsStill TroublingNew HIV cases in Minnesotadropped 11 percent in 2010, butstate health officials are still con-cerned about the overall increasein cases of the disease over a 10-year period.

In 2010, 331 new cases ofHIV were reported in Minnesota,compared with 370 cases in2009. Minnesota Departmentof Health (MDH) officials saythe state has averaged just morethan 300 cases per year for near-ly a decade, but recent yearlyaverages have been around 320cases annually.

“This one-year decrease incases doesn’t tell the whole story,”says Peter Carr, manager of theSTD and HIV section at MDH.“With HIV reporting, it’s moreimportant to look at long-termtrends rather than just one year.”

MDH’s new report on HIV inthe state shows that communitiesof color have the highest rates ofthe disease, male-to-male sex isthe main risk factor for men of allages, and heterosexual sex is themain risk factor for women. HIVcases remain concentrated in theTwin Cities metropolitan area, thereport finds.

MDH officials say the new

News to page 6JUNE 2011 MINNESOTA HEALTH CARE NEWS 5

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MDH: State StrokeDeaths in 2009Numbered 2,023New data from the MinnesotaDepartment of Health (MDH) showthat stroke is one of the leadingcauses of death in Minnesota.Thelatest available data, from 2009,show that stroke is the fourthleading cause of death inMinnesota with 2,023 deathsreported that year.

The data from 2009 alsoshow that more than 90,000Minnesotans, or 2.3 percent ofadults, reported having had astroke; Minnesotans were hospi-talized more than 11,000 times forstroke or transient ischemic attack(TIA); and the total inpatient

charges for stroke-related hospi-talizations were over $367 million,or more than $31,000 per hospi-talization.

MDH officials say a lack ofknowledge about stroke symp-toms can be a barrier to gettingthe needed treatment in time.

“When it comes to strokes,we say that ‘time lost is brainlost,’” says Ed Ehlinger, MD,Minnesota commissioner ofhealth. “That’s why it is so impor-tant for Minnesotans to know thesigns and symptoms of strokeand to call 911 at the first sign ofsymptoms.”

The signs and symptoms ofstroke include sudden confusionor trouble speaking; suddennumbness or weakness of theface, arm, or leg, especially onone side; sudden trouble seeingin one or both eyes; sudden trou-ble walking, dizziness, or loss ofbalance; and sudden severeheadache with no known cause.

Report Says SomeAdults Fake ADHD toGet Stimulant DrugsA new report by a Minneapolisresearcher finds that a significantnumber of people are fakingsymptoms of adult attentiondeficit hyperactivity disorder(ADHD) in order to get drugs.

Paul Marshall, MD, a neu-ropsychologist with HennepinFaculty Associates (HFA), sayshis five-year study looked at howADHD is evaluated in a clinic set-ting. He found that 22 percent ofadults being evaluated exagger-ated or faked ADHD symptomswhen being tested for symptomsof the disorder.

“The problem is widespreadenough that some doctors refuseto even evaluate patients [forADHD],” Marshall says.

An adult ADHD diagnosisusually comes about when anindividual reports symptoms to aphysician.This makes getting adiagnosis easier for adults, ascompared to diagnosing children,

since parents and school teachersare usually involved in thosecases.

Many of the drugs prescribedto treat ADHD are stimulants, andcan be used as inexpensive alter-natives to cocaine and metham-phetamine. ADHD drugs such asRitalin have a street value of asmuch as $4,000; a similar dosagecan be obtained by prescriptionfor $400.

Marshall says in some casesADHD drugs are sought not forrecreational use but as part of anattempt to gain an advantage inan educational setting. “Studentsafraid of failing courses in collegeor graduate school might look foran ADHD diagnosis to get disabil-ity accommodations like privatetesting, longer test times, or spe-cial courses to help improve theirgrades,” says Marshall. “SinceADHD drugs can also increasestudying and testing performancein people without the disorder,these drugs are bought and soldon the black market for the samepurposes.”

News from page 5


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Range Mental Health Center has added two mental health clinicians.

April Bovee, FMHNP, a family psychiatric mental health nurse practi-

tioner, will provide medication management services for adults at

the Virginia and Ely offices. Bovee graduated from the College of

St. Scholastica and is board-certified. Karen Hill provides outpatient

therapy services for adults and children at the Ely

office. She received a degree in counseling psy-

chology from Oklahoma State University.

Patricia Stinchfield, MS, RN, CPNP, who was

the first nurse ever appointed to a key Centers

for Disease Control and Prevention (CDC) adviso-

ry committee on preventing national disease

outbreaks, has earned the American Nurses

Association (ANA) Immunity Award for April 2011.

Stinchfield, who is the director of infectious dis-

ease services at Children’s Hospitals and Clinics of Minnesota, was

appointed in 2004 by the U.S. Secretary of Health and Human

Services to a four-year term as a voting member on CDC’s Advisory

Committee on Immunization Practices (ACIP).The committee, made

up of 15 national experts, provides guidance on the control of vac-

cine-preventable diseases and has a strong influence on the nation’s

immunization clinical policy. Stinchfield now serves as the liaison

member representative to ACIP from the National Association of

Pediatric Nurse Practitioners. In addition to her

hospital role, Stinchfield practices at the

Children’s Clinic in St. Paul for children and ado-

lescents with human immunodeficiency virus

and immune deficiencies.

The Minnesota Academy of Family

Physicians (MAFP) has selected Anthony

Lussenhop, MD, of Alexandria, as its 2011 Family

Physician of theYear.The award is presented annu-

ally to a family physician who represents the highest ideals of the

specialty of family medicine, including caring, comprehensive medical

service, community involvement, and service as a role model.

Lussenhop has practiced at the Alexandria Clinic for almost 15

years and also serves as the clinic’s medical director.The award

was presented during the MAFP All-Member Celebration in April.

Jonathan Herbert, DC, recently opened Northland Applied Kine-

siology in Hermantown. Northland Applied Kinesiology is a chiroprac-

tic office that specializes in ongoing and challenging health problems.

Herbert previously practiced in Los Angeles at the Brain Performance

Center, where he worked with children who suffered from autistic

spectrum disorders and attention deficit hyperactivity disorder. He

also saw patients who suffered from the typical chiropractic problems

of headaches and joint pain and more challenging problems of diges-

tive dysfunction, autoimmune diseases, and thyroid conditions.

Two podiatrists have joinedWinona Health. William Hanson,

DPM, ofWinona Foot Clinic, and Thomas Nachtigal, DPM, ofWinona

Family Foot Care, Ltd., began seeing patients at their new location in

the clinic on theWinona Health campus in April. Both Hanson and

Nachtigal earned their degrees at Rosalind Franklin University's

William M. Scholl College of Podiatric Medicine in North Chicago.

Hanson has provided care in theWinona area for more than 25 years,

and Nachtigal for 18 years. Nachtigal will continue to provide services

twice a month in his Lake City location and will see patients at skilled

nursing residences.

P E O P L E


AnthonyLussenhop, MD

Patricia Stinchfield,MS, RN, CPNP

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Matt SchaferMinnesota PatientAdvocacy Coalition

Matt Schafer is thedirector of govern-ment relations forthe Minnesotachapter of the

American CancerSociety, a foundingmember of the

Minnesota PatientAdvocacyCoalition.

Previously, heworked at theMinneapolis lawfirm of LockridgeGrindal Nauen,where he helpeddevelop and

expand the firm’sgrassroots advo-cacy practice area.Prior to moving toMinnesota in 2005,

Schafer waslegislative director

for the FleetReserve

Association inAlexandria, Va.,which represents

active duty,reserve, and retiredmilitary personneland their familieson pay and bene-fits issues before

Congress.

For the past year, there has been muchdebate over the passage and implemen-tation of the Patient Protection and

Affordable Care Act (ACA) on Capitol Hill, in statecapitals across the country, in courtrooms, and ofcourse on the campaign trail. While many stake-holders have successfully conveyed their clients’views on the act, we observed there was one voicethat was getting lost in the debate—that of thepatient.

Because of that, more than a dozen health andpatient groups representing the elderly, the dis-abled, patients, survivors, and caregivers whoselives have been affected by chronic conditionssuch as cancer, heart disease, diabetes, HIV, arthri-tis, and multiple sclerosis formed the MinnesotaPatient Advocacy Coalition to make their voicesheard. The purpose of the coalition is to advocateat the state and federal levels of government forall Minnesotans to have access to quality healthcare services.

While the coalition is new, many of its membersare household names. TheAmerican Cancer Society,AARP, the American HeartAssociation, and AmericanDiabetes Association are justa few of them.

Our organizations have advo-cated for years in favor ofsubstantial reforms to thehealth insurance industrythat the Affordable Care Actaddresses. Among them are:

• Prohibiting discrimination against children andadults with pre-existing medical conditions

• Closing the Medicare prescription drugdoughnut hole

• Extending dependent coverage until age 26

• Prohibiting revocation of insurance coverage

• Prohibiting arbitrary lifetime limits on insurancecoverage

• Prohibiting restrictive annual limits on coverage

• Guaranteeing coverage for preventive care withno out-of-pocket costs

To the patients our organizations serve, healthcare reform is more than town hall meetings andnews reports. It is a lifeline that, for many, elimi-nates the most feared part of battling the diseasesour organizations are fighting to cure.

Because of the Affordable Care Act,Toni (all namesare pseudonyms) from Rochester can keep her son

and daughter, both of whom suffered from debili-tating diseases as teenagers, on her health insur-ance. Because of previous illnesses, neither ofthem would have been able to afford health insur-ance in college and starting out in the work worldhad they not been able to remain on their mother’spolicy.

The ACA’s reforms help Alyssa and Eric’s family inDuluth.Their daughters Emma, now 11, and Anna,now 9, were diagnosed with type 1 diabetes whenthey were 2 and 4 years old, respectively. Afteryears of battling skyrocketing premiums and largedeductibles, they are no longer faced with theprospect of their daughters being denied insur-ance coverage because of their pre-existing condi-tion. The elimination of annual and lifetime capson payouts for claims means that if Emma or Annafaces a medical crisis, she’ll still be able to keepher insurance coverage. If the girls are unable toaccess or afford coverage as young adults,their parents will be able to cover them until theyare 26.

The reforms will also helpLisa in White Bear Lake. Afterlosing her sister to cancer,Lisa and her father learnedthrough genetic testing thatthey both carry the genefor Lynch syndrome, a geneticcondition that greatly increas-es the risk of colon cancer.The benefit of knowing theycarry the gene is that they arekeenly aware of the need for

annual colonoscopies to screen for cancer. Thedrawback of this knowledge is that Lisa has beenmarked for life in a way that prevents her fromfinding affordable health insurance because of herpre-existing condition.That ends in 2014 under theAffordable Care Act.

Because of the Affordable Care Act, patients nolonger need to choose between saving their livesand their life savings; and no Americans will losetheir lives because they couldn’t afford screeningsor treatment.

The Minnesota Patient Advocacy Coalition hascome together to make patient voices heard andto protect the hard-won insurance reforms thatguarantee adequate, affordable insurance for all.

A voice for patientsCoalition advocates access for all to quality health care

P E R S P E C T I V E

A

For more informationabout the Patient

Advocacy Coalition,contact Matt Schafer at

[email protected].

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Dr. Ammons is a board-certified doctor of podiatric medicine who seespatients at HealthEast clinics in St. Paul and Woodbury.

Why did you decide to become a podiatrist? At the most basic levelone has to decide whether to go into primary care or one of the specialties.Podiatry allowed me to do both. A large aspect of podiatry is primary carebecause many people enter the health care system through podiatry and even-

tually are referred to other specialists. For example, when a patient who has undiag-nosed diabetes or certain skin cancers comes to see a podiatrist, the podiatrist makes

the original diagnosis and then refers the patient to the appropriate specialist for follow-up treatment. The other aspect of podiatry is that it allows me to perform many surgicalprocedures.

Tell us about podiatric medical school. Podiatry school takes four years to get yourdegree, just like any other medical school. The first two years are dedicated to the basicsciences. Many podiatry students take the first two years with other medical students.The next two years are focused on the clinical aspects of podiatry, which includes podi-atric medicine and surgery. Once they are awarded the doctor of podiatric medicine(DPM) degree, most students go on to a two- or three-year surgical residency focusing onthe lower extremity. During this residency you do rotations through the many depart-ments—anesthesia, radiology, orthopedics, internal medicine, etc.

How has health care reform affected podiatry? At this time health care reformhas not had any profound changes on podiatry or medicine in general. Most of thechanges that will have the most impact will be phased in over the next several years. Theone change that exists today is the introduction of electronic medical records. This hasallowed for more continuity of care between physicians. It has been a great benefit to oursystem. It also has helped to diminish medical errors, which can have a huge effect onhealth care cost.

What are the most common problems you see? I treat a wide variety of podi-atric medical conditions. Some of the more common ones are painful foot and ankledeformities such as bunions, hammertoes, heel spurs, and fractures. Many of these condi-tions require surgical care in the hospital or surgery center. Most are outpatient proce-dures, but some patients have to be admitted for a short stay in the hospital. I also treatmany patients who suffer from painful nerve conditions such as neuropathy caused by dia-betes, chemotherapy, and alcoholism; reflex sympathetic dystrophy; and fibromyalgia.These symptoms include pain, numbness, tingling, and burning sensations. Surgical nervedecompression can greatly reduce or completely resolve these symptoms.

How does health care insurance cover podiatric care? Just as it would anyother medical care. Routine foot care in many instances is considered a noncoveredservice. This would include treatments such as trimming of the nails and calluses.It also excludes any appliance-like orthotic device and special shoe gear. All of these serv-ices are covered if a patient has certain comorbidities such as diabetes, peripheral vasculardisease, or neuropathy, and if the patient is on anticoagulants.


Kenneth G. Ammons, DPM

1 0 Q U E S T I O N S

Photo credit: Bruce Silcox

&

Tell us about podiatry subspecialties. Podiatry has somevery interesting subspecialties and many podiatrists focus their prac-tice on these highly specialized areas. These special areas of interestinclude geriatric medicine and podopediatrics, which is the treat-ment of infant and adolescent foot and ankle problems. Some prac-titioners focus on severe trauma to the foot and ankle as a result ofmotor vehicle accidents, injuries due to heavy equipment, severeburns, and injuries in which the skin is torn off, as can happen inlawnmower accidents. The newest area is the treatment of nerveinjuries and of neuropathy and nerve pain.

What are some common misperceptions about podia-try? The biggest misconception about podiatry is that we are notreal doctors. Nothing could be further from the truth. As I men-tioned earlier, podiatrists go to medical school just like any otherdoctor. Another misconception is that podiatrists just cut toenailsand trim calluses. In fact, most podiatrists perform a wide varietyof very complicated foot and ankle surgeries in the hospital setting.

What are some common examples of how podiatristswork with other kinds of kinds of doctors? To be an effec-tive podiatrist, one must be able to interact with other kinds of doc-tors. Referrals between podiatrists and other doctors go both ways.Communication between the podiatrist and other doctors is very

important to assure that the patient is diagnosed and treatedpromptly and properly. The list of physicians that podiatrists workclosely with is long and includes rheumatologist, dermatologist,internal medicine, family practice, endocrinologist, neurologist,orthopedics, and physical medicine and rehabilitative specialist.

What does the future hold for podiatry? The future forpodiatrists looms large. We are facing an aging population and theconditions that affect this segment of the population will onlyincrease in coming years. Incidence of diabetes is on the rise and isaffecting people at a much younger age. Because diabetes can haveserious consequences to the foot and leg, proper foot care isextremely important to this group of people. If patients are nottreated and educated early about the effects that diabetes can haveon the foot, many will suffer loss of limb. Podiatry has been andalways will be an integral part of the health care delivery system.

What is the best thing people can do to have healthyfeet? Feet are like everything else when it comes to your health:Don't ignore early warning signs. The No. 1 warning sign is pain.Pain is not normal. Many people think feet are supposed to hurt,particularly after a long day at work or play. This is not the case. Ifyou visit your podiatrist early, many potentially serious conditionscan be treated easily and successfully.


“ ”Podiatry has been and always will be an integral partof the health care delivery system.

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R E S E A R C H

Fightingrare diseasesHow we can expandtreatment options

By Sen. Al Franken

Every week, Minnesotans affected by devastating diseases visit my Senateoffices. While their circumstances vary, they’re often heartbreaking.Sometimes treatments aren’t working, or the best treatment available is

unaffordable. Some of the most difficult stories I hear are from Minnesotans fight-ing diseases that are so rare that viable treatment options are not available.

These visits with the child with neurofibromatosis or the husband with pul-monary fibrosis often aren’t about how to get treatment for the family membersthemselves. Frankly, it’s usually too late for them. Instead, families are asking forresearch money to help those who will be diagnosed in the future. This selflessnessis inspiring and sobering: inspiring because these are Minnesotans taking the timeto be spokespeople and advocates for a greater good; but sobering to look them inthe eye and know there’s no treatment or device that will save their lives in thetime frame they need.

Challenges to progress

After hearing these stories of families affected by rare diseases, I’ve become inter-ested in how we conduct research and product development for these diseases—because we clearly aren’t doing enough. I sit on the Senate Health, Education,Labor, and Pensions Committee, which oversees the National Institutes of Health(NIH) and the Food and Drug Administration (FDA), so I have an opportunityto help. I quickly learned that there are some key challenges to progress on rarediseases.

Definitions. Definitions create the scope of a problem and set parameters forproblem-solving. But estimates of the number of different rare diseases range from5,000 to 8,000, and part of this wide range is the variation in how rare diseasesare defined. For example, the Orphan Drug Act (ODA) generally targets diseasesthat affect 200,000 or fewer Americans per year. This contrasts with the

Humanitarian Use Device definition for medical devices, whichprovides an expedited review process for devices intended tobenefit patients suffering from ailments that affect fewer than4,000 Americans each year. Both definitions serve importantpurposes, but it’s difficult to create a definition that doesn’tfeel like a line in the sand. While we may need to continue touse different definitions for different purposes, we also mustfind a way to resolve the problem that these different defini-tions create.

Clinical trials. When a disease such as Guillain-Barré syn-drome occurs in fewer than 2 in 100,000 people, it’s nearlyimpossible to recruit enough research participants to make aviable study. There are some promising models we can learnfrom, though. For example, the Children’s Oncology Group,which includes Mayo Clinic and University of Minnesotaresearchers, has more than 150 concurrent studies with over40,000 patients recruited through 200 medical institutions inthe U.S. and internationally. This group has brought about realimprovement for kids with cancer and shows that collaborativeresearch models can improve recruitment and yield results. Weneed to fund more of this type of work.

Health insurance. Another barrier to clinical trials hasbeen health insurance, since many health plans historicallyhaven’t covered routine care if a beneficiary is participating ina clinical trial. The good news is that this changed with thepassage of the Affordable Care Act (ACA) in March 2010.Under the health reform law, health plans must cover routinecare, regardless of clinical trial participation. The ACA also

limits annual caps and eliminates lifetime caps.This makes a huge difference for a family with achild with hemophilia, who may reach his lifetimecap before the age of 6.

Market incentives. Laws like the OrphanDrug Act have fostered enormous progress in thetreatment of rare diseases. Since the act becamelaw in 1983, more than 350 new treatments forrare diseases have been approved by the FDAbecause companies saw the benefit of a longerperiod of market exclusivity, even if the targetpopulation is small. We know these incentiveswork because in the decade prior to the passageof the ODA, fewer than 10 rare-disease drugswent on the market. But 350 drugs in 20 yearsaren’t enough. And since most rare diseases arepediatric conditions, Congress also enacted lawslike the Best Pharmaceuticals for Children Act,the Pediatric Research Equity Act, and thePediatric Medical Devices Safety Act to removebarriers and create market incentives for treat-ments specifically for kids. The Safe MedicalDevices Act that created the Humanitarian UseDevice category at FDA has enabled more than50 devices to be approved under this category.

While these laws have helped, the reality is that the options for mostfamilies affected by rare diseases continue to be too little, too late.

Priorities for Congress

Although we’ve learned a lot since 1983 from both research andmarket perspectives, we must do more. That’s why I was pleasedthat the Institute of Medicine published a report on these issues lastyear: “Accelerating Rare Diseases Research and Orphan ProductDevelopment.” The report includes some concrete recommendationsfor next steps that Congress must consider. And we have some realopportunities to do so in the near future. For example, in the Senatewe soon will be discussing the laws that govern FDA user fees fordrugs and devices. This is an ideal time to consider opportunities toimprove treatments for rare diseases.

Some top priorities for Congress should be:

A national strategy. We need a cohesive, national plan topromote rare-disease research and treatment development. The planshould include milestones so we can track our progress movingforward.

A comprehensive plan for rare diseases at the NationalInstitutes of Health. NIH needs to develop a comprehensiveaction plan that includes all NIH institutes and looks at public-private partnerships to enable researchers to share resources likebiorepositories and animal models. The current NIH Office ofRare Diseases Research does good work, but we must encourageresearchers to work more collaboratively on rare-disease researchacross the entire NIH.

Improved market incentives. My top priority as we begindiscussions in Congress is how Minnesota’s medical device industrycan play a bigger role in improving the lives of patients with rarediseases. I’m proud that companies like Medtronic and EV3 havebeen leaders in developing humanitarian use devices, and I’d like tosee more of these devices developed by Minnesota companies. That’swhy I’m working on legislation that revisits the incentive structurefor devices for rare diseases so we make sure that we’re maximizingdevelopment of innovative devices and ensuring patient safety.There’s bipartisan interest in this topic since it makes sense for ourfamilies and our industries.

So while the stories of rare disease are sobering, we can beheartened by the fact that we have opportunities. With organizationslike the University of Minnesota’s Center for Orphan Drug Researchand the cancer centers at Mayo and the U of M, our state has a greatfoundation to be a leader in this area. I look forward to workingwith Minnesota’s health care and research communities to make realprogress for the families who are affected by these conditions.

Sen. Al Franken (D–Minn.) is an original cosponsor of Senate Bill 606, theCreating Hope Act, introduced in March by Sen. Robert Casey (D–Pa.).This bill intends to spur private-sector innovation aimed at treating rareand neglected pediatric diseases.


Mike is Board certified in family medicine, holistic medicine

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their goals for optimum health.

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The options for most families affected by rare diseasescontinue to be too little, too late.

As spring turns to summer, and Minnesotansincreasingly venture out on walks to get freshair and exercise, aching leg muscles may force

some of them to cut their walks short. Assuming thepain is just a normal sign of aging or perhaps the resultof prolonged inactivity over the winter, these individu-als may not think to mention it to their medicalprovider. However, it could be a sign of a potentiallylife-threatening disease.

Leg pain or cramping brought on or worsenedby walking and other exercise can be a symptom ofperipheral artery disease (PAD). PAD, which is causedby a buildup of fatty deposits in the blood vessels ofthe legs, is associated with increased risk of seriousmedical events, such as heart attacks, strokes, and evendeath. It affects more than 8 million Americans.

Diagnosing and treating PAD

Early detection and treatment of PAD are critical butcomplicated. The most noticeable symptom of PAD isleg pain (claudication) that flares up during physicalactivity and is relieved with rest. Claudication is mostoften characterized by pain in the calves, but it mayalso be felt in the thighs, hips, and buttocks.Unfortunately, one-third of people with PAD do notreport this symptom to their medical provider. Another

factor complicating early detection and delaying treatment is that,according to the American Heart Association, approximately 75percent of people with PAD have no symptoms or symptoms thatare not typical.

The risk factors for PAD are similar to those for coronary heartdisease and cerebrovascular disease: smoking, diabetes, high bloodpressure, and high cholesterol. The prevalence of PAD increaseswith age—20 percent of those over the age of 70 have the disease.Although the incidence of PAD is similar for both genders, womenare less likely than men to have symptoms of claudication, and theyfrequently report atypical symptoms.

The painful onset of claudication may make it difficult to walk,which can diminish a patient’s quality of life. Over time, the limitedblood flow to the limbs that PAD causes can lead to ulceration, gan-grene, and even amputation of an affected limb. Because of the riskof other serious medical events such as a heart attack or stroke, it iscrucial that physicians treat the symptoms of claudication.

An easy and inexpensive way to screen for PAD involves using ablood pressure cuff and a Doppler ultrasound to measure bloodpressure in the arm and ankle. This method, which measures a per-son’s ankle-brachial index (ABI, the ratio between the ankle andarm pressures), takes only about 10 minutes and can be performedin any health facility. Patients should have their ABI measured whenthey have more than one risk factor; when they have leg pain onexertion that is relieved by rest; if they have an aching, burning footpain, especially at night; or if they have a foot ulcer that does notheal. An ABI of .09 or lower indicates the presence of PAD.

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Can arm-cycling reduce leg pain?

U of M study comparesupper-body exerciseto treadmill training

By DianeTreat-Jacobson, PhD, RN


Treatment for PAD typically includes a combina-tion of lifestyle changes (e.g., smoking cessation),exercise rehabilitation, anti-platelet therapy such asaspirin, and risk factor management.

Research on exercise for people with PAD

Research has shown that exercise is particularly effective in reducingsymptoms of claudication and improving the quality of life for peo-ple with PAD. In fact, participation in supervised exercise rehabilita-tion programs often increases the distance that patients can walk byup to 150 percent. Previous studies have shown that both aerobicarm exercise (“arm-cycling”) and treadmill exercise can improvewalking distance in patients with claudication.

A five-year study now under way at the University ofMinnesota is comparing the effectiveness of upper-body cyclingversus treadmill walking during supervised exercise training pro-grams. The goal of the study—titled EXercise Training to ReduceClaudication: Arm ERgometry versus Treadmill Walking (EXERT)—is to understand how people with claudication respond to differ-ent types of exercise.

Participants in the study, funded by the National Heart, Lung,and Blood Institute of the National Institutes of Health, receivesupervised exercise training three times per week for 12 weeks after

being randomly placed intoone of three groups—the armexercise group; the treadmillgroup; or the control group,which is encouraged to do anexercise program at home.

In preliminary studies,outcomes in walking abilityand distance for the arm-cyclers were at least as goodas the outcomes for subjectsin the other groups. The arm-cyclers also showed a decreasein resting blood pressure,while the others did not. Asprimary investigator for the

EXERT study, I suspect that the painful leg symptoms induced bywalking may prevent some walkers from reaching a level of aerobicexertion sufficient for cardiovascular benefit. Walking exercise alsocauses inadequate oxygenation of the leg muscles, which can causeinflammation. With aerobic arm exercise, which doesn’t cause pain

or limit muscle oxygenation, patients can exercise at the levelallowed by their cardiorespiratory fitness. In particular for individu-als who are unstable or can’t do lower-body exercises, arm-cyclingcould be a promising therapy.

The EXERT research team is excited about the potential ofarm-cycling to make life better for people with PAD. The supervisedexercise training can reduce their symptoms of claudication and putthe spring back in a PAD patient’s step.

Diane Treat-Jacobson, PhD, RN, an associate professor at the University ofMinnesota School of Nursing, is principal investigator of the EXERT study.


PAD at a glanceWhat is peripheral artery disease (PAD)?PAD, a common disease caused by a buildupof fatty deposits in the arteries of the legs, isassociated with major disability and significantlyincreased risk of heart attack and stroke.Risk factors: diabetes, cigarette-smoking, highblood pressure, high cholesterol, older ageSymptoms: pain or discomfort in the leg musclesduring physical activity, relieved within minutesof restTreatment: exercise therapy, smoking cessation,anti-platelet therapy, risk factor management

The EXERT studyWhat is the EXERT study? The EXERT (EXercise Training to Reduce Claudication:Arm ERgometry versus Treadmill Walking) study aims to understand how peoplewith leg pain (claudication) respond to different types of exercise. The NationalHeart, Lung, and Blood Institute of the National Institutes of Health is funding thefive-year study. Patients who volunteer to participate in the EXERT study receivesupervised exercise training three times a week for 12 weeks to determine theeffects of aerobic arm or treadmill exercise on their leg pain, walking capability,blood flow, and quality of life. Changes in claudication symptoms are measuredby exercise tests that are supervised by a cardiologist.Why should patients volunteer to participate in the EXERT study? Previousresearch has shown that exercise is effective in improving symptoms of claudica-tion. Individuals who participate in supervised exercise programs often:• increase the distance they can walk before pain starts; and• increase how far they can go before they have to stop because of pain.When does the supervised exercise training begin? The study is ongoing, soexercise training can begin anytime at hospitals and clinics in five locations—Minneapolis, St. Paul, Burnsville, Coon Rapids, and Edina.

For more information,contact the EXERTStudy Office at612-624-7614 [email protected] visitwww.EXERTstudy.org.

Gout is the most common form of inflammatory arthritis in men and affects millions of Americans. In people with gout, uric acid levels build up in the blood and can lead to an attack, which some have described as feeling like a severe

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Talk with public health leaders today and you will likely hearsomething like this: “Public health is global health.” Ournotion of “global” is forged in the blazing pace of the 21st

century in which all nations share the same chronic diseases andpandemics can spread worldwide in hours. But Minnesota has a140-year history of working to improve the health of the state, thenation, and the world.

Public education and public health

In 1862, Congress passed and President Lincolnsigned what would turn out to be one of theimportant pieces of 19th-century lawmaking:the Morrill Land Grant Act. The act gave eachstate federal land on the condition that theland, or money from its sale, be used to estab-lish colleges. The idea was that public universi-ties in undeveloped parts of the country would

generate knowledge and learning to create flour-ishing economies of educated, healthy, and pros-perous people. After the Civil War, the Universityof Minnesota responded to the Morrill “tonic,”emerging in the 1870s with its first permanent fac-ulty and president. It set about the mission of help-ing to transform Minnesota, which it has beendoing ever since.

Health was an important element of this mis-sion. University President William Watts Folwell, aCivil War veteran, appointed his comrade-in-arms,Dr. Charles N. Hewitt, as the first professor of pub-

lic health in the university (and, very likely, in the nation). Hewittwas a physician, innovator, and global thinker who pushed theboundaries of prevention and public health. He visited Louis Pasteurin France and Robert Koch, who helped frame the “germ theory” ofdisease, in Germany. Hewitt built relationships with scientific col-leagues back East in the U.S., and initiated vaccine production inMinnesota as well as one of the first disease surveillance systems in

I N T E R N A T I O N A L M E D I C I N E

Global healthExpanding on Minnesota’spublic health legacy

By John R. Finnegan Jr., PhD

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the country. As a university facultymember, the founding secretary ofthe State Board of Health (forerun-ner of today’s Minnesota Depart-ment of Health), and an earlymember of the Minnesota StateMedical Society (MinnesotaMedical Association forerunner)that sponsored the public healthlegislation, Hewitt was a keyleader. He and others created theorganizational infrastructure thatestablished Minnesota as a bellwether forhealth innovation. From the beginning,global connections were important.

Zip forward to the present. Mostdeveloping nations of the 21st centuryknow very well that research universitiesand higher education are important path-ways out of the poverty trap. And they wantto partner with the best systems of higher education, especially theland-grant institutions like the University of Minnesota that haven’tforgotten their mission to transform learning into impact on peo-ple’s lives.

Launching the “One Health” initiative

While the university has been “global” for a long time, today it isengaged in formal planning about how best to shape its strengths inpartnership with global and peer institutions. What is emerging inthese discussions so far is the idea of global “portfolios” with abroad, inclusive focus on four areas key to human development andachievement: food, health, education, and economic developmentand sustainability. Within each portfolio, one can already find manyprojects, programs, and initiatives that faculty across the universityhave been pursuing for many years with global partners. But theinstitutional planning happening today brings the potential for con-necting and synergizing disparate activities, improving our effective-ness as global university partners, and sharpening our considerableassets in tackling some of the greatest challenges facing the world.

Hewitt’s legacy that launched global health at the University ofMinnesota is well captured in this process. To illustrate, here is anexample of a recent major initiative in the University of Minnesotaglobal health portfolio:

In late 2009, the University of Minnesota was among a team ofrecipients of a five-year, $185 million contract from the U.S. Agencyfor International Development (USAID). The College of VeterinaryMedicine (CVM) and the School of Public Health (SPH) werepoised to take a leadership role in training multidisciplinary teamsof health professionals to prepare for and respond to emerging dis-ease outbreaks. The initiative from USAID directed the planning totake place with local partners in several “hot spots” around theglobe where the conditions are ripe for zoonosis, in which an ani-mal-borne disease makes the jump to humans. Specifically, over thecourse of the five-year project, the team on the project known asRESPOND will work to:

• Improve the training and response capacity for identifying, investi-gating, analyzing, and controlling outbreaks of zoonotic diseasewithin countries and regions

• Strive to improve the coordination among public and privateinterests involved in an outbreak

• Support in-country outbreak response activities

• Introduce new technologies to help improve acountry's response to an outbreak

It’s clear from everything we know about emerg-ing diseases that a multidisciplinary approach is crit-ical. The new framework we are using is called“One Health.” It merges the interests of humanand animal health and the environmental condi-tions within which they interact to shape health forgood or ill. The interaction of human and animal

health in the environment is a complex “dynamic adaptivesystem” that requires interdisciplinary collaborations and communi-cations in all aspects of health, from clinical to population and com-munity approaches. While the specifics of One Health are formativein how it is brought to bear on global challenges, we think thepotential benefits of collaboration with global partners in buildingcapacity are immense—on both sides.

One of the first activities we undertook through the USAID ini-tiative was a two-week Global Health Institute last August in


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“One Health” merges the interests ofhuman and animal health and theenvironmental conditions within whichthey interact to shape health for good or ill.

7,9 & 10 Seen on da StreetsWalk into our clinic! Services are availableto everyone age 15–39. Seen on daStreets provides outreach and health edu-cation to improve your health and well-being. Receive STI screening and treatmentoptions and have a chance to talk aboutsex and educate yourself. Counseling forindividuals and partners is available. Callus at 612-588-9411 for more information.Tuesdays, Thursdays, and Fridays eachweek, 1–4:30 p.m., Fremont Clinic, 3300Fremont Ave. N., Minneapolis

15 Adults with Disabilities“We R Able” is a group for people whohave a disability or who are living with adisabled adult. Meetings are held the firstand third Wednesdays of the month.For more information, call Jeanette Kesterat 320-358-3616.Wednesday, June 15, 1:30–3:30 p.m.,Chisago County Senior Center,38790 6th Ave., North Branch

16 Alzheimer’s/Dementia Caregiver’sMeetingAre your caring for someone affected bymemory loss and needing extra support?The Alzheimer’s Association trains thefacilitator. Come and see if this is the sup-port you need. There is no commitment toattend monthly. For any questions and aone-time registration, call Judy Salaba at651-698-8572.Thursday, June 16, 6–7 p.m., The AltonMemory Care, 1306 Alton St., St. Paul

18 Living With Lynch Syndrome:Third Annual ConferenceThis educational program for individualsand families living with Lynch syndrome ishosted by HealthEast Cancer Care, MayoClinic, and University of Minnesota.We will review medical updates, discusschallenges unique to families with Lynchsyndrome, and explore current research.Participants can speak with experts. Formore information, contact Anna Leiningerat 612-626-9898 or [email protected], June 18, 8 a.m.–5 p.m., MayoClinic, 200 1st St. S.W., Rochester

20 Down Syndrome Parent GroupYou’ll find support, information, newideas, and other parents of children withDown syndrome who understand. Newmembers are always welcome. Please callDown Syndrome Association of Minnesotaat 651-603-0720 or 800-511-3696 formore information about this group orothers meeting in Minnesota. Childcarefee: $3 per child.Monday, June 20, 6–8 p.m., Shepherdof the Valley Lutheran Church,12650 Johnny Cake Rd., Apple Valley

21 Prostate Cancer Support GroupThis group is for patients, family, andfriends who are seeking to ease thepersonal struggles accompanying diagno-sis, treatment, and survival of prostatecancer. Meetings are held the thirdTuesday of every month. Please call952-993-5700 to register.Tuesday, June 21, 5–6 p.m., Park NicolletMethodist Hospital campus, 3931Louisiana Ave. S., Frauenshuh CancerCenter, main lobby, St. Louis Park

24 Maintaining a Healthy HeartGet tips for getting and staying heart-healthy while living a busy life. The speak-er is Jodi Denker, a master’s-preparedexercise physiologist at United’s NasseffHeart Hospital. She works in cardiac serv-ices, employee health and wellness, andcommunity health and education. Nocharge. Please call 651-298-5493 withquestions.Friday, June 24, 10:15–11:30 a.m.,West 7th Community Center,265 Oneida St., St. Paul

Send us your news:We welcome your input. If you have an event youwould like to submit for our calendar, please sendyour submission to MPP/Calendar, 2812 E. 26thSt., Minneapolis, MN 55406. Fax submissions to612-728-8601 or e-mail them to [email protected]. Please note: We cannot guaranteethat all submissions will be used. CME, CE, andsymposium listings will not be published.

America's leadingsource of health

information online

Dystonia Awareness WeekJune 5–11

Dystonia is a movement disorder thatcauses the muscles to contract and spasminvoluntarily. The disorder forces the bodyinto repetitive, often twisting movementsas well as awkward, irregular postures.There are several forms of dystonia, anddozens of diseases and conditions includedystonia as a major symptom. Dystoniamay affect a single body area or be general-ized throughout multiple muscle groups.It causes varying degrees of disability andpain, from mild to severe. The disorderaffects men, women, and children of allages and backgrounds, including 300,000people in the U.S. alone.Although dystonia is a chronic disorder,the vast majority of dystonias do not affectcognition or intelligence, or shorten a per-son's life span.At present there is no cure for dystonia,but multiple treatment options exist andscientists around the world are activelypursuing research toward new therapies.Treatment options generally consist of sev-eral approaches including non-drug thera-pies, oral medications, injected medications,surgery, and complementary therapies.Treating dystonia is most successful whenthe overall treatment plan addresses the

whole person: body (physicalmedicine), emotions (mentalhealth), and spirit (patientsupport). For more informa-tion about locating a physi-cian specializing in dystoniaand support groups, visit theDystonia Medical ResearchFoundation at www.dystonia-foundation.org/or call 800-377-3978.

13 Live Successfully with DystoniaDespite their challenges, members of thedystonia community are resilient and inspir-ing people. Come join us and share yourinsight, questions, and concerns. This groupmeets the second Monday of each month.No registration is necessary. Please call651-232-2258 with questions.Monday, June 13, 6–7:30 p.m.,Bethesda Hospital 559 Capitol Blvd.,Cafeteria, C-level, St. Paul

June Calendar


Kampala, Uganda, one of the initiative’shot spots. Along with colleagues fromthe U of M’s CVM and School ofNursing, and from Makerere University,in Kampala, SPH faculty taught a host ofcourses spanning zoonotic disease, epidemi-ology, applied biostatistics, risk communica-tion, participatory research, and global public health.(A video from the Global Health Institute is at www.sph.umn.edu/outreach/go/gouganda.asp.)

Twelve University of Minnesota students from the schools ofpublic health, nursing, and veterinary medicine joined 65 studentsand junior faculty from universities in seven East African countriesat the institute, which was sponsored, in part, by the U of M.

During the institute, participants traveled to rural Uganda tovisit Queen Elizabeth National Park, a health center, and a fishingvillage on Lake George—where they witnessed an orphaned wildelephant living and mixing with villagers. The situation puts the vil-lagers in danger of being trampled by an unpredictable wild animal,as well as zoonotic transmission of pathogens such as tuberculosis.Closer to the topic of emerging diseases was the sight of water buf-falo and hippos practically sitting on fishing canoes. This proximityobviously creates many opportunities for the wild, the domestic, andthe human to interact, raising the potential to spread disease or evento incubate new ones.

Getting up close and personal with this human-animal-environ-ment interchange “hot spot” illustrated the value of approaching the

prevention of emerging infectious disease through a OneHealth lens. It was a true “aha!” moment for Minnesotaparticipants as well as their African counterparts. And it was

gratifying for the faculty members from the U.S. and Africa towitness the exchange of ideas and solutions among the partici-

pants. Indeed, we have much to learn from our African colleagues.We have much to share, too.

Reaffirming the land-grant mission

From the beginning, Minnesota medical and public health pioneerslike Charles Hewitt recognized that health is global: What happensin the villages and cities of Africa and other places will sooner orlater shape what happens in the villages and cities of Minnesota.Just ask our Latino, Asian, and African immigrants and refugeeswho have enriched this state with their cultures, hard work, anddreams.

Higher education helped transform this nation in areas such ashealth. Now we can “pay it forward” to assist others in building thecapacity they need to sustain a healthy, educated, and prosperouspeople. In these global engagement efforts, we are reaffirming ourown land-grant mission around the world through research, learn-ing, and service.

John R. Finnegan Jr., PhD, is dean of the University of Minnesota School ofPublic Health.

Global health from page 17Their mission is to transformlearning into impact on people’s lives.


WHO’S A BIGGER BASEBALLFAN, YOU OR ME?You’ll find that people with Down syndromehave a passion for knowledge and learningthat can rival anyone you’ve met before.To learn more about the rewards of knowing orraising someone with Down syndrome, contactyour local Down syndrome organization.Or visit www.dsamn.org today.

©2007 NationalDown SyndromeCongress

It is the mission of the Down Syndrome Association ofMinnesota to provide information, resources and support toindividuals with Down syndrome, their families and theircommunities. We offer a wide range of services, programs andmaterials at no charge. If you are interested in receiving oneof our information packets for new or expectant parents,please email [email protected] or

For more information please call:

(651) 603-0720 • (800) 511-3696

Our knowledge of theimmune aspects of MS grows as we

become more aware of changes relatedto the disease process. We thought that the T

cells—white blood cells that play a central role in controlling theimmune response—were the culprits, attacking targets that normallywould be left alone. These targets include myelin, the cell thatmakes myelin (oligodendrocyte), and axons. It appears clearer nowthat the B cells—a type of white blood cell that produces antibod-ies—are also involved in the immunological process.

Variability is MS hallmark

There is a pattern of inflammation and degeneration in MS that isremarkable because of its variability from individual to individual.Many things contribute to this variability. It can truly be said thatno two people with MS are alike.

Clearly there is a genetic component. In the past decade this hasbecome a bit clearer, but genetics does not entirely explain the vari-ability. Chromosome 6, an area involved in control of the immunesystem, has an increased susceptibility to multiple sclerosis. Thereare also linkages involving chromosomes 3, 5, and 19 that havepotential to expedite MS, but only in a minority of individuals.There is much more to learn about the complex genetics.

The likelihood of getting MS is typically about two-tenths of 1percent. If a parent has MS and the child is a female, the risk jumpsto 4 percent; if male, 2 percent. For identical twins, there is a 30percent likelihood that if one has MS, the other will too. Thisdemonstrates that more is involved than simply heredity. It is wellknown that as we look north and south from the equator, the

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MultiplesclerosisAdvances in understandinglead to new treatments

By Randall T. Schapiro, MD, FAAN

When Prof. Jean-Martin Charcot of theUniversity of Paris first described themultiple scars of multiple sclerosis (MS)

in the mid-1800s, he could hardly have imaginedwhat lay ahead. Then as now, the hardened plaquesfound in the white matter of the brain were a mys-tery. But it has gotten a whole lot more complicated.

For more than a century, MS was thought to bea disease that affected only the white matter(myelin) of the central nervous system (CNS, thebrain and spinal cord). However, in the past decadethere has been an emphasis on the fact that the graymatter is also involved. While myelin clearly is a tar-get, the nerves’ axons—the long, threadlike fibersthat conduct impulses away from nerve cells—become damaged in the process as well.


amount of MS increases. This may be because of thegenetics of those who live in those regions. In the pastfew years, the possibility of a role for vitamin D hasalso been raised. Clearly it fits the epidemiological pat-tern, with vitamin D levels falling as distance from theequator increases. Data supporting findings of low vitamin D levelsin those with MS is becoming more available. The final chapter tothis story has not been written yet, but is potentially exciting.

It has been known all along that women are more likely tobecome affected than men. It was thought that the ratio was about2-to-1, but it appears to be increasing to 4-to-1. The reason for thechange is not clear, but the pattern is such that men appear to bepotentially more affected when the disease is present in them. Blackpeople appear to have a more aggressive form than Caucasians, andAsians are unique in that they appear to develop more activity inthe spinal cord than in the brain. It is hoped that recognizing thesedifferences will lead to increased understanding of the abnormalphysiological processes associated with MS.

The role of infection by a virus or similar organism in MS hasbeen a hypothesis for generations. There have been many candidatesin the past including measles, herpes, chlamydia, retroviruses, andnow the Epstein-Barr (EB) virus. The EB virus of infectiousmononucleosis is present in people with MS more often than wouldbe expected. Whether this is cause and effect or a manifestation ofthe activity of the immune system is not yet clear.

Advances in diagnosis, treatment

Understanding some of the immunology of MS has led to the devel-opment of newer treatments aimed at slowing the disease process.Simplistically, MS happens when a susceptible individual’s immunesystem is presented with an antigen (a foreign substance) by a cellthat programs T cells with B-cell participation. Those cells enter thebloodstream and pass through the blood-brain barrier into the nerv-ous system. The potency is expanded via cytokines, central nervoussystem hormones. Eventually, the cells find myelin or oligodendro-cytes that remind them of the original antigen, and the damagebegins.

Diagnosing MS remains a clinical process. The McDonaldCriteria, developed in 2001, revised in 2005 and 2010, and regardedas the gold standard, allow for an MS diagnosis if a person has “sep-aration in time and space” of neurological symptoms and findings.That typically means more than one attack involving the CNS atmore than one site. Using magnetic resonance imaging (MRI) canexpose the timing and anatomy of involvement when the clinical pic-ture is not entirely clear. The actual criteria are more complicated,but suffice to say that they have made the diagnosis easier and havegiven confidence to an earlier diagnosis. Looking for increasedimmune activity in spinal fluid also continues to be helpful.

Management of MS

Managing MS is about disease management, symptom management,and person management. Changing the course of the disease issomething every provider longs to do. Nonetheless, managing thesymptoms of MS remains the backbone of treatment. Attention to apatient’s personal, vocational, and lifestyle issues is also important.

MS has traditionally been divided by its apparent progressioninto relapsing, a fluctuating pattern of attacks and periods of calm(around 55 percent of those with MS); secondary progressive, a pat-

tern where the attacks fade and progression occurs (around 30 per-cent); primary progressive, progressive from the onset (10 percent);and progressive relapsing, progressive at onset, followed by relapseslater (5 percent). These are not actual forms of the disease, butrather patterns of progression. The descriptive term for the MSchanges if the path deviates. There are now seven FDA-approvedmedications designed to potentially change the natural course ofMS. They have all been approved for relapsing MS.


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Multiple sclerosis to page 25

It can truly be saidthat no two people with

MS are alike.


Stroke is a “brain attack,” a medicalemergency that requires rapid assessment

and treatment in order to preventor minimize permanent brain damage.

While stroke is often treatable and preventable, it remainsa leading cause of death and disability. In the United States,there are about 795,000 new strokes each year, an average ofone stroke every 40 seconds. Stroke is the third leading causeof death and the No. 1 cause of severe disability in the UnitedStates. In 2008, there were 11,900 hospitalizations for strokein Minnesota (about one every 45 minutes).

Types of strokeThe term “stroke” is used broadly to describe an abrupt onsetof damage to the brain caused by lack of blood flow or bleedinginto or around the brain. There are two broad categories ofstroke—ischemic and hemorrhagic.

Ischemic strokes are by far the more common type ofstroke, accounting for about 85 percent of all strokes. Thesestrokes occur when an artery supplying a portion of the braingets plugged (usually from a blood clot). The plugged arteryprevents vital, oxygen-carrying blood from getting to where it’sneeded. If the brain tissue goes without oxygen and nutrientsfor more than a few minutes, brain cells begin to die. Thisregion of brain death is the “stroke.”

The symptoms of stroke begin instantaneously. These symp-toms will vary, depending on what part of the brain is affected.


StrokeThe brain’s equivalent of a heart attack

By Matthew Ostrander, MD

Common stroke symptoms includeweakness, speech difficulty, numb-ness, and vision loss. The symp-toms are usually on one side ofthe body. The acronym “FAST”(Face, Arm, Speech, Time) is oneway to help quickly recognizecommon signs of stroke:

• Face: Ask the person to smile.Does one side of the face droop?

• Arm: Ask the person to raiseboth arms. Does one arm driftdownward?

• Speech: Ask the person to repeata simple phrase. Is his or herspeech slurred or strange?

• Time: If you observe any of these signs, call 911 immediately.

Occasionally, the symptoms of a stroke resolve quickly and theperson may return to normal within minutes without any treatment.This occurs when a blood clot blocking a brain artery dissolves onits own, before any permanent damage occurs. This stroke-likeevent that lasts only for a short time is called a transient ischemicattack (TIA). TIAs are often referred to as “mini-strokes.” Even ifthe symptoms go away quickly, a TIA is still a medical emergency,since people are at high risk of having a full-blown stroke directlyafter a TIA. Rapid evaluation and treatment after a TIA have beenshown to prevent future strokes.

With any signs of a possible stroke, it is important to call 911immediately, since potential treatments are time-sensitive. When astroke is due to a blood clot, the “clot-busting” drug called tissue

plasminogen activator (TPA)has been shown to reducethe chance of disability ifgiven within the first fewhours after symptoms begin.The earlier TPA is given, thebetter the chance of a goodoutcome with little or nodisability.

Unlike ischemic strokes,“hemorrhagic” strokes arenot due to lack of bloodflow, but are caused bybleeding into or around the

brain. The most common type of hemorrhagic stroke occurs whenblood leaks directly into the brain tissue. In most cases, this bleed-ing is caused by years of high blood pressure, which weakens smallblood vessels within the brain. A second type of hemorrhagic strokeis due to bleeding around the brain caused by a ruptured aneurysm.An aneurysm is a weak point within the blood vessel that allows itto enlarge. When a brain aneurysm ruptures, the person will havean instantaneous and severe headache, which is a medical emer-gency requiring immediate treatment.

Risk factors for strokeThere are several risk factors for stroke, which include fixed riskfactors and modifiable risk factors. Fixed risk factors such as age,

race, and family history of stroke cannot bechanged. Modifiable risk factors for stroke includehigh blood pressure, smoking, diabetes, and highcholesterol. Other modifiable factors associatedwith stroke are obesity, lack of exercise, and highalcohol intake.

High blood pressure is the No. 1 modifiablerisk factor for stroke, and about one of every threeadults in the United States has high blood pressure.Blood pressure medications have been shown tolower stroke risk by 30 percent to 40 percent.Unfortunately, only about 50 percent of Minne-sotans with high blood pressure have their bloodpressure adequately controlled.

Smoking is another modifiable risk factor thatapproximately doubles the risk of stroke. Smoking

increases stroke by causing disease of the blood vessels and by mak-ing the blood clot easier. This increased stroke risk is seen in peopleof all ages. Despite its risks, about 17 percent of Minnesotans con-tinue to smoke.

Diabetes has also been shown to at least double the risk ofstroke. Diabetes increases the risk for high blood pressure, high cho-lesterol, and disease of the arteries. Appropriate management ofhigh blood pressure and high cholesterol in people with diabetes hasbeen shown to significantly reduce the risk of stroke. About 6 per-cent of people in Minnesota have diabetes. Unfortunately, aboutone-third of these people do not realize they have diabetes, which

Stroke to page 24

• Sudden onset of numbness or weaknessof the face, arm, or leg, especially on oneside

• Sudden confusion, trouble speaking orunderstanding

• Sudden trouble seeing in one or both eyes• Sudden trouble walking, dizziness, loss ofbalance or coordination

• Sudden severe headache with no knowncause

If you or someone you’re with experiencesone or more of the above symptoms,CALL 911.

Commonsymptoms of stroke

Preventable stroke riskin MinnesotaRisk factor Percentage of

population at riskHigh blood pressure 22

Smoking 16.7

Diabetes 6.4

High cholesterol 34

Physical inactivity 16

Obese/overweight 62

Source: Minnesota Department of Health

In the next issue...

• Plastic surgery

• Acute pain

• Cataracts


prevents them from getting the appropriate treatment.Alarmingly, 37 percent of adults in the United States havepre-diabetes, and the proportion of Americans with diabetesis expected to double by the year 2050.

High cholesterol is a known risk factor for disease of theblood vessels, which can lead to heart attack and stroke.Cholesterol-lowering medications called statins lower strokerisk. Statins are able to significantly lower the “bad cholesterol,” orlow-density lipoprotein (LDL), thereby reducing stroke risk.

Other factors associated with increased stroke risk include obe-sity and physical inactivity. Obesity increases risk of high bloodpressure, diabetes, and high cholesterol. Obesity is defined as a bodymass index (BMI) greater than 30. BMI is calculated by weight (inkilograms) divided by height (in meters) squared. As BMI increases,so does stroke risk. In addition, several studies have shown an asso-ciation between physical inactivity and stroke risk, with moderatelyactive individuals having a 20 percent lower stroke risk compared toindividuals with more limited physical activity.

Treatment of strokeThe first step in treating stroke is rapid recognition of its symptomsand calling 911. After the emergency response system is activated,an ambulance will be dispatched to the stroke victim’s location.Research shows that patients who arrive at the emergency center byambulance get treated faster than those who arrive by private vehi-cle. After arrival at an emergency center, a person experiencing astroke will have a brain scan, which can distinguish an ischemic

stroke from a hemorrhagic stroke. If the symptoms are due to anischemic stroke, the clot-busting drug TPA may be used. If thestroke is hemorrhagic, other tests may be performed to determinethe cause of the bleeding and prevent worsening of the stroke. Afterthe first phase of stroke treatment, every effort is made to lower therisk of future stroke. This includes identification and treatment ofstroke risk factors, such as high blood pressure, smoking, diabetes,and high cholesterol. For ischemic strokes, other blood-thinningmedications may be added to reduce the risk of future stroke.

In summary, stroke is often treatable and preventable. It is criti-cal to recognize the warning signs of stroke and call 911 immedi-ately in order to receive time-sensitive treatments that are proven toreduce the chance of disability. Strategies for prevention of strokefocus on controlling risk factors such as high blood pressure, smok-ing, diabetes, and high cholesterol. Additional strategies that maylower stroke risk include frequent exercise, maintaining a healthyweight, and a healthy diet with fruits, vegetables, and low amountsof salt and saturated fats.

Matthew Ostrander, MD, is a stroke specialist at Park Nicollet ClinicMethodist Hospital, in St. Louis Park.

Stroke from page 23


ResourcesAmerican Stroke Association:www.strokeassociation.orgNational Stroke Association:www.stroke.orgMinnesota Department of Health:www.health.state.mn.us/divs/hpcd/chp/cvh/

Appointments:

Online or Call 651-439-8807

Providing care at multiple modern clinics in Minnesota and Wisconsin

In 2008, Tanzanian missionaries brought little Zawadi Rajabu to the U.S. to seek treatment for her two severely clubbed feet. A physician referred Zawadi to Dr. Mark T. Dahl of St. Croix Orthopaedics. Using the Ilizarov Method, Dr. Dahl surgically changed the course of Zawadi’s feet and her life.

Dr. David Palmer and Russ McGill, OPA-C, recently traveled to Tanzania on another of their frequent medical missionary trips. They dedicated an entire day to checking in on their partner’s patient. To their delight, they were greeted by 6-year-old Zawadi her face aglow, her healed feet dancing toward them.

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multiple moderte aviding carorP innesota and n clinics in Multiple moder onsiniscWesota and

Beta interferons (Avonex, Betaseron/Extavia, Rebif) work onone part of the immune system while glatiramer acetate (Copaxone)works on another. Natalizumab (Tysabri) works on still another andthe newest medication, fingolimod (Gilenya), works on still anotherpart. Mitoxantrone (Novantrone) is a potent general immune sup-pressant also approved for use in MS patients. The most recentadditions—natalizumab and fingolimod—appear to have significantpotential toxicity, opening the immune system to opportunisticinfections that can be disabling or even fatal. However, they alsocome with increased convenience. Natalizumab is a monthly intra-venous medication and fingolimod is the first approved oral treat-ment for the disease.

Deciding which medications to use and when has become quitecomplicated, as interactions may linger and raise the potential forproblems over time. Thus, making an appropriate selection requiresa familiarity with each medication, using appropriate caution toweigh risks versus benefits. Nonetheless, having a variety of treat-ments for a disease as variable as MS allows for potentially bettercontrol of the disease process for more people than in the past. Thisclearly provides a significant measure of hope to decrease disabilityover time.

The pipeline for other treatments affecting other parts of theimmune system is full and studies are very promising. All will comewith risks and will require intelligent analysis of the risk/benefitratio. The science is complicated enough, but when added to the“cost/benefit/risk” analysis of managed-care organizations, itbecomes very difficult.

Symptom management has also gained in the recent past withnewer medications for bladder control, uncontrolled emotional out-bursts (Nuedexta), and improved ambulation (Ampyra). Ampyra(dalfampridine) has been a particularly important addition for thosewith the common symptom of walking difficulty.

Managing patients with MS continues to be done on an individ-ual basis. A team of professionals is often necessary for efficient andeffective treatment. The team includes physicians, nurses, physicaltherapists, occupational therapists, psychologists, social workers,nurse practitioners, physician assistants, and many others.

Randall T. Schapiro, MD, FAAN, is the founder of the Schapiro Center forMultiple Sclerosis at the Minneapolis Clinic of Neurology and president ofthe Schapiro Multiple Sclerosis Advisory Group in Eagle, Colo. A clinicalprofessor of neurology at the University of Minnesota formore than 35 years, he is retired from practice but continuesto work and consult for a variety of organizations,including the National MS Society.

Multiple sclerosis from page 21

Managing the symptomsof MS remains thebackbone of treatment.


“Multiple sclerosis upended the plans I had, forcing me to face uncertainty. I’ve learned to adapt and focus on what’s truly important to me.”

— Susan, diagnosed in 1995

What does MS equal to you?Join the Movement® at MSsociety.org

dreams lost. dreams rebuilt.

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On Elaine’s first visit to my office, I was struck bythe way she carried herself. Tall and confident,she chose her words deliberately. With a mas-

ter’s degree in organizational development and years ofexperience helping companies achieve their goals, she hada strong reputation as a successful business consultant.

In recent months, however,something had changed: She feltanxious before meetings, hadtrouble organizing her thoughtsand getting ideas down onpaper, and struggled to keep upwith her work. She noticed shewas spending more time search-ing for papers around the officeand had to be very diligentabout taking notes, or she might notaccomplish everything she needed to do.Coworkers and family members noticedthat she wasn’t herself. As our conversationunfolded, Elaine became tearful as she said,“My husband thinks I’m having trouble withmy memory. I didn’t notice it at first, but nowI’m worried, too.”

A neurologist with expertise in disorders thataffect memory and thinking had referred Elaine

to me. Together, we completed a careful work-up of hersymptoms that included an interview with family mem-bers, review of her medical records, a neurological exam-ination, blood tests, brain scans, and tests to measure hermemory and other cognitive abilities. When the results

came back, the diagnosis was sobering:young-onset Alzheimer’s disease.

Elaine was only 57.

Conventional image doesn’talways applyThere are many myths aboutAlzheimer’s disease. One of the

biggest is that it develops only late inlife, in a person’s 70s or 80s. Whenmost people think of Alzheimer’s dis-ease, they think of very elderly, verydisabled people living in nursinghomes. Indeed, while most peoplewith the disease are older, Alzhei-mer’s can strike some people as

young as their 30s.Young-onset Alzheimer’s disease, also

called early-onset Alzheimer’s disease, is aform of dementia diagnosed before the ageof 65. The words used to describe the diag-


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nosis refer to the age of onset and not thestage of dementia. In other words, young-onset individuals can be in any stage ofdementia when they receive a diagnosis,with symptoms from mild to severe, butthey are under 65 when the condition firstemerges.

The National Institute on Agingestimates that 5 percent to 10 percentof the 5.4 million Americans living withAlzheimer’s disease are under the age of 65.This translates to 270,000 to 540,000 peo-ple with young-onset Alzheimer’s across thecountry and about 4,700 in Minnesota.

SymptomsAlthough expressed at an earlier age, the symptoms of young-onsetAlzheimer’s disease are very similar to those seen in traditionalAlzheimer’s. They can include:

• Loss of recent memories severe enough to disrupt daily life

• Repeating oneself in conversation

• Misplacing things at home or work with more regularity

• Trouble organizing and expressing thoughts

• Difficulty finding words or names of objects, places, or people

• Problems concentrating or multi-tasking

• Diminished ability to interpret symbols or understand directions

• Difficulty planning or solving problems

• Limited or poor judgment

• Becoming disoriented or lost in familiar places

• Confusion

• Withdrawal from social activities

• Poor motivation, apathy, depression, anxiety, irritability, or othermood changes

Not all people with young-onset Alzheimer’s disease experiencesymptoms in the same order or progress through the illness at thesame speed. Scientists are still learning about individual factors thatcontribute to how symptoms are expressed and what can be done toslow their progression.

Researchers have found that young-onset Alzheimer’s often runsin families and many people with the disease have a parent, grand-parent, or other relative who also developed the condition at a youngage. Several genes have been linked to the young-onset form of thedisease. These genes are different from the gene that can increaseone’s risk of developing Alzheimer’s disease in general.

DiagnosisThere are many reasons why people are encouraged to talk with theirdoctors about memory loss and pursue an appropriate diagnosis asearly as possible. An early diagnosis means:• Medication treatments may be more effective• There is more time to plan for the future• Needs can be anticipated and crises minimized• Patients and families have earlier access to valuable support services• There are opportunities to enroll in clinical trials for new, investiga-tional medications

• The home environment can be optimized to promote independence

• Family and friends can learn how to provide supportwhen it is neededDespite these benefits, people may need to be

assertive when asking their doctor for a proper workupof their symptoms or a referral to a specialist. Althoughmost doctors should be able to do an adequate workupfor Alzheimer’s disease, some do not feel comfortabledoing so, particularly when individuals present withsymptoms at an early age.

Even with proper medical attention, obtaining anaccurate diagnosis of young-onset Alzheimer’s can be along and frustrating process. Alzheimer’s is not routine-

Read usonlinewherever you are!

www.mppub.com

Young-onset Alzheimer’s disease to page 31

ResourcesMinnesota leads the nation when it comes to advocating for more researchfunding, recommending better dementia training in medical schools, creatingmore young-onset community support programs, and helping local communi-ties become dementia-competent. For more information about the state’s planfor Alzheimer’s, go to the website for the Alzheimer’s Association ofMinnesota/North Dakota (www.alz.org/mnnd) and click on “PrepareMinnesota for Alzheimer’s 2020.”The association also offers an array of resources for individuals with dementiaand their families. Services include:• 24-hour information helpline (800-272-3900)• Support groups• Young-onset programs• Individualized needs assessments and connection to local resources• Referrals for legal and financial planning• Community and professional education



Each year more than 38,000children in the U.S. die froma terminal medical condition.

Most of those children suffer unne-cessarily because many physiciansmight be afraid to use powerfuldrugs on children, or they aresimply not yet trained in pain andpalliative care.

Central to any team entrustedto help a child heal, pediatric painand palliative care is part of a holis-tic, interdisciplinary approach tocaring for child and family—nomatter what the diagnosis.

The pain and palliative careprogram at Children’s Hospitals and Clinics of Minnesotais one of only a few centers of its kind in the country. Ourcare team is trained specifically to treat and relieve chil-dren’s pain and other distressing symptoms, such as nau-sea, fatigue, and loss of appetite, to name a few. Just asimportantly, we work with family members to help themease their child’s pain and, if their child passes away, wehelp families though the process of grief and bereavement.

Live as long as possibleas well as possiblePediatric pain and palliative care is sometimesmisconstrued as simply hospice care forchildren. While hospice-type care ispart of what we do, pediatric pallia-tive care provides solace for childrenof all ages who are suffering froma life-threatening or life-limitingcondition—regardless of whethercurative treatments succeed orfail. With an integrated painand palliative care program,care is provided within acontinuum, from acute,chronic, or complex pain

and symptom management, topalliative care and hospice care.

Palliative care is not“giving up.” Most often, itinvolves the management ofpain and distressing symp-toms in children, helping themto endure their treatment and to heal.

P E D I A T R I C S

Pain and palliative care for children

Control of painand related

symptoms helpschildren endure

treatmentBy Stefan J.

Friedrichsdorf, MD

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These treatments usually occur in the hospital or clinic set-ting, but for children with life-limiting conditions, treatment is

moved to the home when appropriate.The goal of a pediatric pain and palliative care program

should be to help a child live as long as possible as well as possible.One baby boy our program cared for was diagnosed with a

genetic disorder soon after birth that had and would cause majordevelopmental defects in many of his organs. Sadly, most childrendiagnosed with this particular defect die within the first month of life.

After his diagnosis, both his parents and his providers noticedthat he was almost constantly in some form of discomfort, oftenwrithing in pain. The boy’s doctors suggested a pain medication, buthis parents resisted, fearing it would interfere with their child’s abilityto eat and grow stronger so that he could have needed heart surgery.

Still, in order to meet certain developmental milestones, the boyneeded to have his pain properly managed. After agreeing to the med-ication, his parents felt comforted by the fact that, when their son diddie a few months later, he was not suffering. In fact, when children’sdistressing symptoms are aggressively managed—commonly withopioids and/or benzodiazepines (sedatives)—they live longer and witha better quality of life.

No needless painThere are few things worse than watching one’s child in pain. AtChildren’s, we have a philosophy of “no needless pain.” Often, thisincludes the use of drugs, usually in combination with non-pharma-cological therapies such as massage or music therapy, hypnosis, oracupuncture. Distraction is also an oft-used technique: During apainful procedure, we may encourage the child to blow bubbles orwe may use guided imagery to focus the mind on something positive.Even something as simple as touch can bring comfort.

Drugs and other techniques are often used in concert, but eachchild’s case is unique. The one aspect of pain and palliative care thatis universal is that treatment is most successful when approachedearly and aggressively.

Helping children and families live wellPain is a complex and unique experience that affects all areas of achild’s life. Whether the pain is caused by a chronic illness or has anunknown cause, it can affect relationships, school, family life, andeveryday responsibilities.

In 2003, our team cared for a boy who was being treatedfor leukemia. As a result of his treatment, he developed avery rare side effect—chronic pain that sidelined him fromliving his adolescent years properly. Despite daily medica-tions, the boy became severely disabled by the pain. Heneeded a wheelchair and missed many days of school. Hisfamily turned to our department for help.

After his evaluation, the boy had regular appointmentsat our pediatric pain clinic, where he learned to use alterna-tive therapies like biofeedback and self-hypnosis. The teamalso prescribed physical therapy, including aquatic therapy.By the time school began in the fall of 2007, he was able tostart his freshman year of high school without a wheelchairand without strong pain medications. Now, he rarely missesa day of school, can enjoy his favorite activities, and is nolonger limited by his pain.

Another child, who died at the age of 12, described hiscare this way: “Palliative care no longer means helping children

die well, it means helping children and their families to live well andthen, when the time is certain, to help them die gently.”

One care teamWhen patients and families have their first visit with the pain andpalliative care team in our clinic at Children’s, they are greeted by aninterdisciplinary team that usually includes a nurse, social worker,physical therapist, psychologist, and pediatric pain and palliative carespecialist. This active and total approach to care embraces physical,emotional, social, and spiritual elements to healing. By including the


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1875 Woodwinds Drive, Suite 110, Woodbury, MN 55125

Pain and palliative care for children to page 30

Five myths about pediatric palliative careMyth: The death of a child in the U.S. is a rare event.Fact: Fifty thousand or more children die each year, more than 15,000 ofthem due to a life-limiting disease.Myth: Pediatric palliative care is only for children with cancer.Fact: Cancer causes only a about a quarter of the deaths in children due tolife-limiting conditions.Myth: Pediatric palliative care starts when curative treatment stops and/orwhen a child is close to dying, and ends at death.Fact: Pediatric palliative care starts at diagnosis of life-threatening or life-limiting disease and continues through the trajectory of the illness.Myth: Parents have to choose between “fighting for a cure” or “giving up.”Fact: Life-saving care and excellent symptom relief can and should be provid-ed simultaneously.Myth: Pediatric palliative care is the same as “doing nothing.”Fact: Even when the underlying condition cannot be cured, sophisticatedmedical technology can be used to control symptoms and improve a child’squality of life.

whole team on the initial interview, the familydoes not have to repeat the pain narrative,which is often a painful and taxing experience,more than once.

At the end of the evaluation, the team meetsand makes recommendations for immediatefollow-up with the same evaluating providersand with other pediatric specialty areas as needed. No matter the rec-ommendation, the next steps focus on the enhancement of the qualityof life for the child and support for the family. This may include themanagement of distressing symptoms, provision of respite, and care.

Reaching outIn order to advance the state of the art of pain and palliative care,Children’s volunteered in 2003 to develop a centralized pediatricresource center for the state of Minnesota in conjunction with its hos-pice and palliative care programs.

The Children’s Institute for Pain and Palliative Care offers train-ing, consultation, and technical assistance to providers in Minnesota,Wisconsin, North and South Dakota, and Iowa. To date, the institutehas trained more than 1,000 providers and has hosted practicum visi-tors from many U.S. states and from overseas.

Limited access to a necessary serviceOnly a few generations ago, it was not uncommon for infants andchildren to die. Today, thankfully, mortality rates in the developedworld have plummeted. While comprehensive, state-of-the-art pallia-

tive care for adults is fast becoming the norm,access to and availability of palliative care for themajority of children with life-threatening condi-tions is still lacking. In the U.S. and in most

other countries worldwide, the vast majority of infants,children, and teenagers with advanced illness who are near the end oflife do not have access to interdisciplinary pediatric palliative careservices either in their community or at the nearest hospital.

State-of-the-art management of pain and distressing symptoms inchildren in the 21st century requires the integration of pharmacology,medical interventions, and rehabilitation with complementary non-pharmacological and supportive therapies. At Children’s, this is partof the day-to-day activity and we see patients from all areas, not justthose suffering from cancer or terminal illness. We have found thattreating even the mildest kinds of pain helps children heal faster.

Our positive experience in pediatric palliative care was recentlysupported in a randomized, controlled trial involving adults. This2010 groundbreaking study published in the New England Journal ofMedicine found that adults with advanced lung cancer who receivedpalliative care in addition to standard cancer therapy not only had abetter quality of life and less depression, but also lived longer thanthose who received only standard cancer therapy.

Stefan J. Friedrichsdorf, MD, is medical director of the Department of PainMedicine, Palliative Care and Integrative Medicine at Children’s Hospitalsand Clinics of Minnesota.

Pain and palliative care for children from page 29


Health Care ConsumerAssociation

Minnesota

Each month members of the Minnesota HealthCare Consumer Association are invited toparticipate in a survey that measures opinionsaround topics that affect our health caredelivery system. There is no charge to jointhe association, and everyone is invited.For more information please visitwww.mnhcca.org. We are pleased to presentthe results of the May survey.

Per

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Excellent Very good Average Not good Poor0

10

20

30

40

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23.3%

27.9%

41.9%

7.0%

0.0%

Per

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None 1 2 3 4 or more0

10

20

30

40

50

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51.2%

27.9%

11.6%

2.3%

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2. How many daily medications do you take totreat cardiovascular conditions?

1. How would you describe your cardiovascularhealth?

Per

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resp

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0

5

10

15

20

25

30

35

14.0%

18.6%

30.2%

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None 1 2 3 4 or more

Per

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5

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15

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25.6%

Very

satisfied

Satisfied Does not

apply

Unsatisfied Very

unsatisfied

37.2%

23.3%

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5. How satisfied are you with the communicationbetween your physicians around the medicalmanagement of your cardiovascular health?

4. How many preventive measures (diet, exercise,etc.) are you doing specifically because they areknown to prevent cardiovascular disease?

Per

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0

10

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3. How well do you know the symptoms of stroke?

May survey results...

Treating even the mildest kinds of

pain helps children heal faster.

ly expected in younger individuals. When aperson younger than 65 goes to the doctorwith memory loss and other hallmark symp-toms of the disease, his or her physician maynot even think to consider Alzheimer’s as a possibility. In many cases,early symptoms are attributed instead to stress, menopause, “normalaging,” or mood problems.

As in Elaine’s case, a diagnostic workup typically involves a phys-ical or neurological exam, lab tests, mental status testing (objectiveassessment of memory and thinking), and, in some cases, a brain scansuch as a CT or MRI. When a patient presents earlier in the course ofthe disease or has a more complex medical history, neuropsychologi-cal testing, functional exams, or other tests may also be needed.

TreatmentAlthough there currently is no cure for Alzheimer’s disease, availabletreatments are typically most effective when the disease is identifiedearly. The FDA has approved five medications—donepezil, galanta-mine, rivastigmine, tacrine, and memantine—to help people withAlzheimer’s disease maintain their mental functioning and managesymptoms. However, the manufacturer no longer actively marketstacrine because of significant side effects, and memantine is approvedonly for moderate to severe Alzheimer’s. The three remaining drugshave traditionally been used to treat all stages of the disease. Whilenone of the medications stop or reverse the underlying progression ofthe illness, they do offer benefits to many people, particularly in thefirst 12 to 18 months of treatment. Other medications, such as thoseto improve mood and sleep, may also be used.

In addition to medication treatment, lifestyle changes are fre-quently recommended. Creating more structure and routine in dailyactivities can help people stay focused. Reducing alcohol use, main-

taining a healthy diet, seeing the doctor regularly,increasing physical activity and exercise, stayingsocially engaged, and finding new ways to keep

mentally stimulated are often advised.

Unique challengesThose with young-onsetAlzheimer’s disease face distinctchallenges. Many are still work-

ing when their symptoms emerge.Due to the nature of the condition, changes in their job performanceor behavior may not be understood or addressed. Those who arefired or who leave their jobs before obtaining a diagnosis may neverbe offered employer assistance that would otherwise be provided tosomeone with a recognized disability. Job loss can, of course, alsomean loss of insurance coverage and tremendous financial burdens.

Many individuals with young-onset Alzheimer’s are still raisingfamilies. A spouse may need to increase work hours to help supportthe household. In addition, since most services for people withdementia are designed for older individuals, those with young onsetoften do not feel comfortable in traditional community programs.Support groups and adult day programs that specifically targetyounger people and families may be available only in larger, urbanareas.

On the upside, last yearthe federal governmentapproved young-onsetAlzheimer’s disease as acondition that qualifies for

faster approval of Social Security disability benefits.

One year laterBack at the office, it’s time for Elaine’s one-year follow-up exam.Since her diagnosis, she has been taking medications to treat hermemory loss and anxiety. She’s less anxious and believes the medica-tion has helped to stabilize her memory. Elaine also tells me that shehas made several lifestyle changes based on recommendations fromour initial evaluation.

Elaine decided to retire from her consulting business and is nowable to spend more time with family and friends. She was approvedfor Social Security disability benefits, which provide the family withmuch-needed financial support. She has been staying as active as pos-sible and has developed a routine that involves regular exercise, men-tal stimulation, and social activities. She and her family are alsoinvolved in several support groups and other programs through theAlzheimer’s Association and spend time volunteering at fundraisingand advocacy events to increase awareness of the disease.

Terry R. Barclay, PhD, is a neuropsychologist who specializes in aging anddementia. He sees patients at the HealthPartners Center for Dementia andAlzheimer’s Care and maintains a private practice in Edina.

Young-onset Alzheimer’s disease from page 27

A diagnosis of

Canceris

overwhelmingnews.

It raises many questions few of us are prepared to answer,such as:

• How can I take time off from work?

• Can I get help paying bills?

• What is the difference between a health care directiveand a power of attorney?

• Can I keep my health insur-ance even if I lose my job?

• And many others.

If you or a loved one is facingcancer, we are here to help.

We provide free cancer relatedlegal information on a widerange of topics.

Please visit our web site tofind out more:

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educate.inform.empower

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donations are welcome.

Obtaining an accuratediagnosis of young-onsetAlzheimer’s can be a longand frustrating process.



More and more, we arehearing about the role ofself-management in

achieving and maintaining goodhealth. While care professionals canhelp us identify our health condi-tions, prescribe treatments, and teachus about diseases and conditions, it is self-management—things we do on a day-to-daybasis to take care of ourselves—that can havemajor impact on our health and quality of life.

Studies have established that if adults arephysically active on a regular basis, have healthyeating habits, avoid tobacco, and take steps to

minimize their risk of falls and otherinjuries, they can live longer, healthi-er lives. We also know that when onemust change behavior to adopt andmaintain those healthy choices, it isnot easy. Whether you need to main-tain your health or address ongoing

conditions like diabetes, osteoporosis, heart dis-ease, arthritis, asthma, or high blood pressure,you are making choices that affect your well-being. We are all engaged in self-management.The choice is whether to be active managers whowork at making healthy choices or to be passivemanagers who take what comes.

Active self-managers recognize that theirdecisions about exercise, healthy eating, stressmanagement, and using the health care systemplay a crucial role in maintaining or improv-ing their health. For those with ongoingconditions such as diabetes, heart disease,osteoporosis, arthritis, or high blood pres-sure, these daily decisions play a central rolein determining the course of their conditionand their quality of life. Further, thosewho succeed are more likely to stay outof the hospital and may need fewermedications and other treatments,saving them money.

C O M M U N I T Y H E A L T H

Take charge,live wellYou’re the boss

By Pamela Van Zyl York,MPH, PhD, RD, LN

SPINE SURGEONS

Paul D. Hartleben, M.D.Board-Certi�ed Orthopedic SurgeonFellowship-Trained Spine Surgeon

Bryan J. Lynn, M.D.Board-Certi�ed Orthopedic SurgeonFellowship-Trained Spine Surgeon

Nicholas J. Wills, M.D.Fellowship Trained Spine Surgeon

NON-SURGICAL SPINE C ARE

Tom Cesarz, M.D.Board-Certi�ed Physical MedicineFellowship-Trained in spine

John A. Dowdle, M.D.Board-Certi�ed Orthopedic Surgeon

Kristen M. Zeller, M.D.Board-Certi�ed Pain ManagementFellowship-Trained Pain Management

esearch has shown that complex problems like

back and neck pain are best treated by centers

of excellence that specialize in spine. Consequently, in

2010, Summit Orthopedics created Summit Spinecare

as a regional specialty center for spine, based in a new

6,500 spine center space in Woodbury.

Summit Spinecare combines the expertise of three

non-surgical spine specialists, three fellowship-trained

spine surgeons, spine-specialized therapists, X-ray, MRI

and an injection suite — all under one roof.

We’ve also invested in patient education with an

on-line spine encyclopedia at www.SummitSpinecare.

com. Also, as a free community service, we provide a

36-page Home Remedy Book with exercises that relieve

neck and back pain. Call us and we’ll send you 20 copies

for you to provide as a resource to your patients.

By having it all in one place, the back or neck pain

sufferer no longer has to drive around town anymore.

Now isn’t that a welcome relief?

At last, a spine center with everything under 1 roof

R

The spine specialty center of Summit Orthopedics2090 Woodwinds Drive, Woodbury, MN 55125Appointments & Referrals:

651.738.BACKwww.SummitSpinecare.com

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Getting startedA good first step if you want to be an active self-manageris to evaluate your current lifestyle choices. Are youmeeting your goals for exercise? Are your eating habitslargely healthy? Do you keep stress under control? Doyou see your health care provider when you should tokeep tabs on your health status, keep your immuniza-tions up to date, get the health screening tests you need,and manage any ongoing health conditions you have?Ask yourself if you need to work on any of these areas.If the answer is yes, pick something to start with. Somepeople can make big changes or make a number ofchanges at the same time, but most of us are more suc-cessful making more gradual change and working on onething at a time.

Once you know what you want to change, identify what youneed to do to accomplish your goal. If you need to be more

physically active, what kind of activities do you want to do?If you’re going to use that elliptical machine in the base-

ment that has been serving as out-of-season clothesstorage, your first step may be to unearth theequipment. Or it may be to get the bike out ofthe garage and cleaned up. If you’ve tried these

strategies before and they haven’t worked aswell as you’d like, think about whatyou could do differently. You mayneed to find a buddy to ride orwalk with who will help you stayon track. Maybe you need toarrange your daily schedule differ-ently so you can work in a regulartime to use the exercise equipment.Or you might want to consider acommunity exercise program thatgives you a chance to meet newpeople. People with ongoing healthconditions such as arthritis mayneed to learn more about their con-dition and what type of exercisewill be best for them.

To improve your eating habits, you may need to learn moreabout food labels so that you can make good choices. You mightlook for a healthy cooking class or a new cookbook. If it’s stressmanagement you need, you might learn more about meditation oryoga as a first step.

Community programsParticipating in community programs is often an effective way to gethelpful information, learn new skills, and benefit from the supportand accountability that come from a group. A number of programsoffered in Minnesota communities have been shown to be effectivein helping people live healthier lives.

The Healthy Eating for Successful Living program helps partic-ipants identify the changes they would like to make and increasestheir skills in reading labels and identifying healthy food choices andsetting and achieving goals. The small group classes and peer leadersoffer support in finding solutions to everyday challenges.

Also directed by trained peer leaders, A Matter of Balanceprovides information and support for participants who wish toreduce their risk of falls and their fear of falling. It also includesa 30-minute exercise program that helps participants build strengthand balance.

The behavior-change strategies used in both of these programsare based on a model developed at Stanford University. Much of thekey research and development of community programs that giveparticipants the essential skills to be effective self-managers has beendone at Stanford’s Patient Education Research Center over the past20 years. The Chronic Disease Self-Management Program (CDSMP)is the most widely implemented of their programs in the U.S. and


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Take charge, live well to page 34

Finding classes to support healthy choicesMany people find that taking part with others in programs to help themmake healthy decisions gives them added support they need. TheMinnesota Department of Health and the Minnesota Board on Aginghave developed a website with information about key programs thatresearch has shown to be effective. The site includes a calendar of offer-ings across the state. These programs serve the needs of adults of allages who want to make or maintain healthy changes.The site includes information about the Stanford Chronic Disease Self-Management Program offered in Minnesota as Living Well With ChronicConditions; Better Choices, Better Health; Living In Balance; and Path-ways to Better Health. Also included are A Matter of Balance, a fallsprevention program; Healthy Eating for Successful Living; and theArthritis Foundation Exercise Programs. Investigate the possibilitiesat www.mnhealthyaging.org.

Questions? Email them to [email protected].

The choice iswhether to beactive managerswho work atmaking healthychoices, or to bepassive managerswho take whatcomes.


worldwide. In Minnesota com-munities, it is offered as

Living Well With ChronicConditions; BetterChoices, Better Health;Pathways to BetterHealth; or Living inBalance. Small groupsmeet with trained peer leaderseach week for six weeks and

learn and practice strategies andskills that can help them manage

their condition. Participants supporteach other and become proficient at set-

ting and achieving action plans and prob-lem-solving while learning about techniques

like guided imagery and progressive musclerelaxation.Other topics include exercise, using medica-

tion appropriately, making treatment decisions,healthy eating, and communicating effectively with

your health care team. Studies show that participantsincrease their physical activity, have more energy, and expe-

rience less pain, fatigue, and depression. They have increasedconfidence in being able to manage their health and better partner-ships with their health care providers. Longer-term evaluation hasshown decreases in hospitalization and health care costs.

Care coordinationMany health care organizations are doing more to help theirpatients be active self-managers. If you have ongoing health condi-tions, you may have the opportunity to work with a care coordina-tor who can help you coordinate your health care visits, trackyour health status, and provide you with information about yourcondition and about community resources that can be helpful. Someclinics offer community programs such as Living Well With ChronicConditions at their clinic site or connect people with programs intheir community.

Changing health habits can seem overwhelming. Often, aswith all those New Year’s resolutions from years past, we give up.Approaching your goals in a step-by-step fashion, taking smallsteps, and finding the people and programs who can support youcan help you succeed as a self-manager this time.

Pamela Van Zyl York, MPH, PhD, RD, LN, is arthritis program directorin the Division of Health Promotion and Chronic Disease, MinnesotaDepartment of Health.

Take charge, live well from page 33Don Clarkʼs storyDon Clark lives with diabetes, high blood pressure, high cholesterol,sleep apnea, and asthma. He first became involved with CDSMP byparticipating in the Living in Balance course at the Native AmericanCommunity Clinic in Minneapolis. After completing the course, Dontrained to become a program leader. He is now one of two NativeAmerican trainers in Minnesota. He continues to use what he haslearned on a daily basis. His hemoglobin A1c has dropped from 7.8 to6.8, his total cholesterol is 119, his blood pressure averages 130/72,and his asthma is under control.

The Chronic DiseaseSelf-ManagementProgram has beenwidely implementedin the U.S. andworldwide.

A philosophy of caring is good. A history of it is better.Caring. It would be nice if you could see it, like an amenity. Or tour it, like an apartment. But you can’t. All we can do is give you our definition: Caring is believing that everyone is someone who deserves to feel loved and valued, and be treated with dignity.

That’s not just something we say. As the nation’s largest not-for-profit provider of senior care and services, it’s what we’ve been doing for almost 90 years.

To learn more about our communities in Minnesota, call 1-888-GSS-CARE.

The Evangelical Lutheran Good Samaritan Society provides housing and services to qualified individuals without regard to race, color, religion, sex, disability, familial status, national origin or other protected statuses according to federal, state and local laws. All faiths or beliefs are welcome. Copyright © 2010 The Evangelical Lutheran Good Samaritan Society. All rights reserved. 10-G2016

www.good-sam.com

FlexPen®, Levemir®, and NovoLog® are registered trademarks of Novo Nordisk A/S.© 2009 Novo Nordisk Inc. 139219 October 2009

Reference: 1. Data on file. Novo Nordisk Inc, Princeton, NJ.

* Intended as a guide. Lower acquisition costs alone do not necessarily reflect a cost advantage in the outcome of the condition treated because there are other variables that affect relative costs. Formulary status is subject to change.

break a vial habit

Model is for illustrative purposes only.

For formulary access specific to your area, visit www.novomedlink.com.

With FlexPen®, your patients aren’t limited by a vial and syringe.FlexPen® is a simple, patient-friendly insulin dosing option. And it’s available for the same copay as vial and syringe on most managed care plans.1* So, just add “FlexPen®” to your patients’ prescriptions and free both of you from the vial and syringe.

Documents

Minnesota Health care News June 2011