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LUNG HeALTH
an independent supplement by mediaplanet to chicago tribune
get testedlung disease is underdiagnosed
managing copdearly treatment is key
Photo: Xanthe eLBriCK
March 2011
smoking cessationQuitting is for winners
3fACtS
Photo: Xanthe eLBriCK
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LUNG HeALTHLUNG HeALTH
cultivatingcompassionDeborah Morosini, devoted sister to the late Dana Reeve, lends support to greater lung cancer awareness
2 · march 2011 an independent supplement by mediaplanet to chicago tribune
CHALLeNGeS
Courage, hope and activismone family’s fi ght for a cure
we reCommend
page 5
LUnG heaLth2nd edition, marCh 2011
Managing Director: Geraldine [email protected] Manager: Jackie [email protected]
responsible for this issue:publisher: terence [email protected] Developer: Brandon [email protected]: mariel Fitzgeraldmariel.fi [email protected]: alpha-1 Foundation, Joel africk, eryn-ashlei Bailey, Kim Fernandez, deborah morosini, Jill smits, sally wadyka, harold wimmer, american Lung association
Distributed within: Chicago tribune, march 2011this section was created by mediaplanet and did not involve the Chicago tribune or its editorial departments.
mediaplanet’s business is to create new customers for our advertisers by providing readers with high-quality editorial content that motivates them to act.
Ann Baker joined more than 4,000 people on Sunday, February 27 for Respiratory Health Association’s Hustle Up the Hancock.
Defeating lung disease
when Ann B a k e r crossed the fin-ish line a r m -i n- a r m
with a friend, she cried. She cried for the support she’d received, for the feat she had accomplished, and for what she has left to do. Ann, a lifelong non-smoker, has stage IV lung cancer, but she won’t let it stop her.
We are inspired by Ann—and many others—who remind us we must overcome a trio of challenges in the fi ght against lung diseases.
Increased awareness of lung diseases is essentialFor example, chronic obstructive pulmonary disease (COPD) is now the third leading cause of death in the U.S. However, experts esti-mate that half of the people living with early symptoms of COPD are
undiagnosed, which aff ects their quality of life and delays proper treatment. Similarly, asthma is the leading cause of school absences due to chronic illness, but it can be controlled by educating children about how to manage their asthma triggers and prevent episodes. Again, awareness is key.
prevention is criticalThe best prevention strategy is to clean up what goes into our lungs, starting with cigarette smoke. Along with the Chicago Depart-ment of Public Health and other community partners, we provide free smoking cessation services (70 percent of smokers say they want to quit!) and promote policies that limit exposure to secondhand smoke.
And, although smoking is the leading cause of lung cancer and COPD, these diseases are not always a result of tobacco use. The second leading cause of lung cancer
is radon, an invisible, odorless gas that can seep into our homes. An inexpensive kit can detect radon, and solutions are available to pro-tect your family if it is discovered.
We also need to clean up the air we breathe. According to the EPA, the air in Chicago is still too dirty to meet federal standards. Reducing pollution from power plants and diesel exhaust will mean fewer asthma attacks and exacerbations. Prevention saves lives.
lung disease research offers hopeAsthma, COPD and lung can-cer affect millions of families, but these diseases receive only a fraction of the available federal research funding. The same is true for other less common lung diseases such as ARDS, pulmonary fi brosis and sarcoidosis. Funding will become a priority as our com-munity joins together to speak up and get involved!
Joel Africkpresident & ceo, respiratory health association of metropolitan chicago
“the best prevention strategy is to clean up what goes into our lungs, starting with cigarette smoke.”
CopD IS the thIrD leADING
CAUSe of DeAth IN the U.S.
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CopD IS the
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Why is it vital for individuals to maintain a healthy lung lifestyle?
Your life depends on it! Every day we take for granted the
over 20,000 breaths we take. Imag-ine struggling for half of those and you begin to understand what it feels like to be a person with COPD or lung cancer.
Staying smoke-free and away
from secondhand smoke, exercis-ing and practicing proper nutri-tion can help everyone lead hap-pier, healthier lives.
Beyond smoking cessation, what is the most important measure readers can take to improve their lung health?
Understand your environ-ment and make healthy air
your goal. Air pollution is one of the major causes of lung disease so become familiar with outdoor and indoor air pollution sources. Avoid
outdoor strenuous activity during the summer when ozone levels are high, and control the sources of pollution in your home including radon gases. Radon is the second leading cause of lung cancer.
how can those diagnosed with a lung disease become better self-managers of their health?
Stay informed. The fi eld of lung health is constantly
changing as new treatments, therapies, and drugs become available. Joining lung disease support groups, bookmarking websites about your disease, and knowing what resources are available to you can help you fi nd options your doctor may not know about.
QUestions and answers
harold Wimmerpresident and ceo, american lung association, greater chicago
Take a
CLOSER look at COPD and asthma.
The American Thoracic Society recommends all individuals with COPD or asthma characterized by incompletely reversible airflow obstruction should be tested once for alpha1-antitrypsin deficiency (AATD).1
AATD is a common genetic disease that is underrecognized, underdiagnosed, and often misdiagnosed as COPD or asthma.
Based on a study of 304 patients, 44% of those who have AATD may see three physicians over a period of 7 years before they are accurately diagnosed.2
The American Thoracic Society recommends alpha1-antitrypsin deficiency (AATD) testing if you have any of the following conditions/situations:1
• You are an adult with symptomatic emphysema or COPD
• You are an adult with asthma with minimal response to aggressive treatment with medication/inhalers
• You have been diagnosed with liver disease with unknown cause
• You have siblings with AAT deficiency
Testing should be discussed with your physician if you have any of the following conditions/situations:
• You are an adult with bronchiectasis with unknown cause
• You have a family history of COPD or liver disease
• Your siblings, offspring, parents, or distant relatives are a carrier for AATD
To request additional information, please call 1-866-367-2174, or visit www.alpha1health.com.
What you find may surprise you.
References: 1. Adapted from The American Thoracic Society/European Respiratory Society statement: standards for the diagnosis and management of individuals with alpha-1 antitrypsin deficiency. Am J Respir Crit Care Med. 2003;168:818-900. 2. Stoller JK, Sandhaus RA, Turino G, et al. Delay in diagnosis of alpha1-antitrypsin deficiency: a continuing problem.Chest. 2005;128:1989-1994.
Baxter is a registered trademark of Baxter International Inc. All other products or trademarks appearing herein are the properties of their respective owners.
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4 · march 2011 an independent supplement by mediaplanet to chicago tribune
INSIGHTQuestion: Is lung cancer only caused by smoking tobacco?Answer: No—one in fi ve women and one in twelve men diagnosed with lung cancer have never smoked.
Cultivating compassion and stomping out stigma
This past St. Patrick’s Day, I was in Dublin, Ireland to honor and celebrate the 50th birthday of my late sis-ter, Dana Reeve, where memories of my late
Irish Catholic mother compelled me to “light a candle.”
Though love for my sister is tinged with sorrow at her untimely death from lung cancer, every day I continue to fi nd renewed resolve and radical commitment to expose and unseat the pervasive and insidious societal
attitude of stigma and blame directed towards patients and families living with this brutal disease.
No one deserves lung cancerSince Dana’s death fi ve years ago, she has become the “face of non-smoker’s lung cancer.” If she were still with us, Dana would gracefully shrug off this mantle of “blameless victim” and per-haps remind us that nobody, smoker or non-smoker, deserves lung cancer. When her husband, Christopher Reeve, was paralyzed in a riding accident, Dana eschewed the role of Saintly
Superwoman: “There was nothing superhuman
about standing by Chris. What’s so saintly about that? Lucky me, I’m with him! Really, my job here is to be the voice for the many, many spouses who are caregivers, who don’t have the advantage of the world patting them on the back every day.”
Coming together for a cureDana’s respect for ordinary cour-age acknowledges the reality that we will all face loss and suff ering, but within this shared experience
exists the opportunity to respond with compassion. Compassion and wisdom trump stigma every time, as stigma merely aff ords us a false sense of relief with which to quell our fears. Indulging in stigma and blame divides us, and weakens our collective voice.
We are blessed with the gift of life and the power of choice. Choose com-passion. It’s powerful, expansive, and magical in its ability to open our shin-ing eyes and speak with one voice. Lung cancer is an epidemic. Let’s face it together. Eyes wide open.
“lung cancer is an epidemic. let’s face it together.”Deborah Morosini
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Courage, hope and activism
Mary and Lou DeFalco were ecstatic to learn they were expect-ing their fi rst baby. But diff erent emotions took over when routine testing showed they were both carriers of the Cystic Fibrosis (CF) gene, and their child had a one in four chance of having the disease.
“A bit of shock, confusion and heartache took over,” says Mary. “But we chose not to do any further testing and instead put our energy into having a healthy pregnancy and educating ourselves.”
Action modeThe DeFalco’s soon learned that CF is a life-threatening disease that causes mucus to build up and clog bodily organs, which can impede
lUNG CANCer IS the leADING
CAUSe of CANCer DeAth
IN the U.S.
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lUNG CANCer
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Patients with chronic obstructive pulmonary disease (COPD) hear it over and over: stop smoking. Many ignore the advice, thinking that because they already have the condition, giving up cigarettes is likely too little, too late. But doctors say they’re wrong and that there is one very good reason to stop smok-ing after a COPD diagnosis: ciga-rettes actually make prescribed medication lose its eff ectiveness.
“Smoking not only causes lung diseases such as COPD and lung cancer, but it also makes the treatments for those conditions less eff ective,” says Jerry Krish-
nan, M.D., Ph.D., director of the Asthma/COPD Center at the Uni-versity of Chicago Medical Center. “If you continue to smoke, the medications or treatment plan you are actively using are not going to work as well. Continuing to smoke only makes matters worse.”
He says the reasons are simple enough. “If you smoke, the medica-tion doesn’t work as well. Smoke damages the lungs. Therefore, you’re doing something to help your lungs at the same time you’re dam-aging them. And smoking directly aff ects how your body responds to the medication you’re taking.”
Inhaled steroids, which are the cornerstone to most COPD treat-ments, work by turning on sig-nals to suppress infl ammation in the lungs. Smoking blocks those signals, along with causing other harm.
“If you have lung problems, stop-ping smoking at any point can help you recover and stop the acceler-ated deterioration of lung func-tion,” he says. “It is never too late to stop smoking and see a benefi t.”
kim FErnAndEz
If you keep smoking, medication effectiveness may puff away
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march 2011 · 5an independent supplement by mediaplanet to chicago tribune
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Courage, hope and activism
Mary and Lou DeFalco were ecstatic to learn they were expect-ing their first baby. But different emotions took over when routine testing showed they were both carriers of the Cystic Fibrosis (CF) gene, and their child had a one in four chance of having the disease.
“A bit of shock, confusion and heartache took over,” says Mary. “But we chose not to do any further testing and instead put our energy into having a healthy pregnancy and educating ourselves.”
Action modeThe DeFalco’s soon learned that CF is a life-threatening disease that causes mucus to build up and clog bodily organs, which can impede
proper digestion, make breath-ing difficult and eventually lead to lung damage. When their son Michael was born, it became appar-ent that he wasn’t growing prop-erly, and a test confirmed he had CF. When Mary became pregnant again, a prenatal test revealed their second son, Dylan, would also have the disease.
“Though we grieved a bit with each diagnosis, our natural ten-dency is to take action,” says Mary. “We believe we create our own destiny, and today we have two rough and tumble little toddlers who love to play.”
A day in the lifeCF is a labor-intensive disease, and
the DeFalco’s take an aggressive approach to their boys’ care. Mary is a devoted caregiver, administer-ing three breathing treatments and 25 pills to each child daily. And while the boys’ health is always top of mind, she says the family also lives for the moment.
“Everyone has their own nor-mal, and this is ours. Our kids are just kids—Dylan is hysterical and Michael goes to preschool and loves soccer. They have a lot to deal with, but their bravery is remarkable.”
Grassroots activismThe DeFalco’s also take an aggres-sive approach to advocacy and fundraising. Because CF is con-sidered rare, it receives little attention or financial support from federal agencies and large pharmaceutical companies. As a result, Mary says parents have always been a key force behind CF research and funding. “We’re in this to find a cure, and grassroots fundraising is the best way we can help make it happen.”
how we made it
jill smits
Understanding bronchiectasis
Bronchiectasis is a lung condition when dam-aged airways slowly lose
the ability to clear out mucous build up in them. Bacteria grow as the mucous continues to clog the airways which lead to repeated lung infections. With every new lung infection, the condition worsens. Mucous build up in the airways prevents oxygen flow to vital organs in the body. Bronchiectasis is char-acterized by a daily cough that produces large amounts of spit where mucous or blood may be present. People with bronchiec-tasis may experience shortness of breath, wheezing, or chest pain. Today, non-cystic fibrosis bronchiectasis remains a seri-ous health concern for adult’s age of onset between 60 and 80 years-old.
don’t miss!
Eryn-AshlEi BAilEy
■■ Question: Who gets cystic fibrosis?
■■ Answer: approximately 30,000 children and adults in the united states have cystic fibrosis. an additional ten million more—or about one in every 31 americans—are carriers of the defective cF gene, but do not have the disease.
fUtUre fUll of hope “When you have two kids fighting the disease, you want the miracle to happen today.” Photo: timothy whaley PhotograPhy
6 · march 2011 an independent supplement by mediaplanet to chicago tribune
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aatd: the “FamiLY tree” disease
leSS thAN 10 perCeNt of AlphAS hAVe
BeeN properlY DIAGNoSeD
leSS thAN 10
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Several million Americans suffer from lung diseases such as asthma and chronic obstructive pulmonary disease (CopD).
While only a small fraction of those will also have Alpha-1 dis-ease, testing for it should be a routine part of care for any patient who comes to the doctor with symptoms of lung disease.
“Alpha-1 doesn’t present any dif-ferently than any other lung dis-ease, so without testing for it spe-cifi cally, there is no way to diagnose
it,” explains Kyle Hogarth, MD, medical director of the pulmonary rehabilitation program at The Uni-versity of Chicago Medical Center.
A simple test makes all the differenceYet, diagnosing it as early as possible is the key to healthier breathing. Alpha-1 is a protein that protects the lungs, but those with this genetic disease don’t make enough of the protein. Left untreated, Alpha-1 will speed up the rate of lung function loss and lead to the eventual need for a lung transplant. But a simple
weekly infusion of the protective protein can keep lung function sta-ble. “And since it is a genetic disease, if you do test positive for it, it’s impor-tant for your siblings and children to be tested as well,” says Hogarth.
Hogarth urges patients to ask for the test if their doctor doesn’t off er it. “It’s not on the radar with enough doctors, but anyone who is on an inhaler or has any other symptoms of lung disease should get tested,” he says.
Question: Can a simple blood test save the life of someone with lung disease?Answer: For those with Alpha-1, it can.
John Shook, 81, is an Alpha who lives in Kissimmee, FL. He and his wife Mary Lou raised 17 children, 11 of their own and the six chil-dren of Mary Lou’s late sister.
After John was diagnosed with Alpha-1 in 1992, he and Mary Lou encouraged their children to be tested. All but one daughter did get tested; several were Alpha-1 carriers. Ironically, the daughter who refused to be tested herself or have her children tested had a daughter with repeated lung infections. The girl grew up and decided to have herself tested. Sure enough, she’s an Alpha.
Today, the Shooks’ granddaugh-ter is on augmentation therapy and doing quite well. Says John Walsh, Alpha-1 Foundation presi-
dent and CEO, “With three of four siblings carrying the ZZ phe-notype, Alpha-1 has had a great impact on my family. Our mother passed away at 46 years old. We didn’t know it was genetic. Would we have made diff erent choices in our lifestyles or professions had we known? Absolutely.”
Since early diagnosis and good health choices are so important to an Alpha’s quality of life, the Alpha-1 Foundation launched a family awareness campaign last fall. The goal is to encourage fami-lies of Alphas to consider being tested for Alpha-1.
sAlly wAdykA
Testing for the whole family
AlPhA-1 FOUndAtiOn
march 2011 · 7an independent supplement by mediaplanet to chicago tribune
NewS
More than 22 million Americans suffer from asthma. for some, the disease is little more than a nuisance that can be easily controlled with an inhaler and other medications.
But for many, it is a debilitating, life-altering (and even life-threat-ening) condition that results in 1.8 million emergency room visits, 500,000 hospitalizations, and 4,000 deaths every year.
There are numerous medica-tions that help keep asthma symp-toms under control. For sudden flare-ups, there are quick-relief inhalers that relax and open up your airways but for those with severe asthma, none of these options may be enough. And that’s where the breakthrough proce-dure called bronchial thermo-plasty comes in.
“Only a small fraction of asth-matics will need this, but for those who qualify, it can be a lifesaver,” says Kyle Hogarth, MD, medical director of the pulmonary reha-bilitation program at The Univer-
sity of Chicago Medical Center. “The ideal candidate is one who is doing everything right—taking all of their medications, don’t smoke, don’t live with pets—but still has uncontrolled symptoms.”
the procedureWhen the smooth muscles in the airway contract, they cause the airway to tighten and breathing gets harder. The bronchial thermo-plasty procedure uses a catheter to deliver radiofrequency energy
to destroy some of that muscle so that it can no longer constrict and impair breathing. It’s done in three separate sessions (each working on a different area of the lungs) sched-uled three weeks apart to allow for healing time.
Hogarth cautions that it’s not a cure. “But it can lead to fewer hospi-tal visits, less missed work and a sig-nificantly improved quality of life.”
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bronchial thermoplasty breakthrough: For those with severe asthma, breathing just got easier treatment matters
there is no cure for CopD: patients know that.
And for that reason, some don’t seek treatment for their symp-toms, living with them for months or years before finally calling a doctor when things become unbearable. But experts say that early treatment can dras-tically affect the outcome of a COPD diagnosis.
“Most patients who experience breathlessness see it gradually build up over the course of a year,” says Ravi Kalhan, MD, assistant professor of pulmonary medi-cine at Northwestern University Feinberg School of Medicine. “They stop doing things that make them breathless and they come with a variety of excuses for why it’s happening—they’re get-ting older or they’re just slowing down. They go on and on until the disease is rather severe, but if it were detected early, things could be more actionable.”
“People think there’s no dis-ease-modifying treatment except
quitting smoking,” he continues. “There are medications that help lessen the shortness of breath and prevent COPD exacerbation. That can improve the patient’s quality of life, and it increases their exer-cise capacity. So while the medi-cations don’t slow the decline of lung function right now, they have real, substantial benefits on a day-to-day basis. You’re going to feel better and do more, and not be hospitalized as much.”
He says anyone experiencing shortness of breath, particularly among people over the age of 45 or smokers, should visit their doc-tors and ask about COPD. Those with a COPD diagnosis should call their doctor at any worsening of symptoms.
“Prevention of those exacerba-tions is huge,” says Kalhan. “Early treatment of an exacerbation can help keep things from getting worse.”
kim FErnAndEz
credit: asthmatx
