Addressing the needs of the Canadian COPD patient

PULSE—WORLD COPDNEWS: HIGHLIGHTS OF NEWS

RELATED TO LUNG HEALTH ........3

AN EMERGING PROBLEM:UNPROVEN STEM CELL THERAPY..1

COPD PEOPLE: PHYLLIS ROSENWORKS THE POLLING STATIONDURING ELECTIONS..................7

Let’s Boogie: The dance class forpeople with COPD

“Ihave never seen such joyin this class. Everyonewas having so much fun,”

said Meeran Manji, Director ofToronto Western Hospital’sPulmonary Rehab clinic. Whatprompted her response was a“COPD and dance class” that hadjust ended.

The class is an applied danceprogram that is investigating theeffectiveness of dancing on physicalfitness, quality of life, balance,anxiety and depression. This is apilot program from West ParkHealthcare and the University ofToronto, led by Dr. Dina Brooks.The facilitators at the TorontoWestern Hospital event were MiriamSchacter, RP and Robin MacPhail-Dempsey. Both facilitators areexperienced dance instructors whospecialize in working with peoplewith chronic illnesses.

“COPD dance” is not what onewould first imagine. A lot of thedancing is done in a sitting position.The dance movements incorporateboth large reach and small reachgestures. There are a variety ofroutines, all set to music. The musicis age appropriate and most of thesongs were very familiar to thepulmonary rehab group inattendance.

In spite of the fact that you aresitting for a major portion of theprogram, at the end of the 40

Chronic Obstructive Pulmonary DiseaseAn emerging problem

Unproven stem cell treatments for lung disease are those that have not yet beenadequately or fully tested for safety and effectiveness (how well they work). Thebest way to test potential stem cell therapies is through clinical research trials that

have to follow certain rules. These rules are set by national regulatory agencies such asHealth Canada* and the U.S. FDA (Food and Drug Administration) to make sure thatthe treatments are tested following proper scientific methods without any conflict ofinterest.

What are stem cells and how can they potentially be used in medicine?Stem cells are undifferentiated cells that have the ability to become specializedcells. They also are ableto make more copies ofthemselves. There aredifferent types of stemcells including thosefound in embryos(embryonic stem cells)and those produced inthe laboratory by treatingnormal adult cells, suchas those from the skin ormuscle, to become stemcells (induced pluripotentstem cells). In addition,researchers are learningthat every organ in thebody has a small numberof cells that serve asorgan-specific stem cellsthat work to replace orrepair damaged tissue. Itis possible that each ofthese types of stem cellsmay one day be used totreat different humandiseases. One exampleof successful use of

Ask Dr. BourbeauJean Bourbeau is a respirologistand full professor in theDepartment of Medicine andEpidemiology and Biostatistics,McGill University, Montreal

Q I was wondering ifanyone with COPD hasexperienced swollen feet. Could it

be caused by my COPD medications?

A In COPD patients, swelling of the legs, ankles,and feet can be related to prednisonetreatment although it may also indicate that

the patient has developed a type of heart failure calledcor pulmonale, or right ventricular failure. Patientswith swollen feet should inform their physician and beevaluated.

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Supported by an educational grant from Novartis Pharmaceuticals Canada Inc. Canada Post Canadian Publications Mail Sales Product Agreement Number 40016917Please forward all correspondence on circulation matters to: Chronicle Information Resources Ltd., 555 Burnhamthorpe Road, Ste 306,Toronto, Ont. M9C 2Y3Living with COPD is published for COPD Canada by Chroni cle Information Resources Ltd.Contents © 2018, Chronicle Companies, except where noted. Printed in Canada.

Q Is there any truth to the report that theuse of statin drugs can reduceexacerbations, hospital admissions and

prolong life expectancy in COPD patients?

AFrom a recent randomized clinical trial, the statindrugs had no effect in reducing severe exacerbations orhospitalizations. Accordingly, the highest level of

evidence doesn’t support the use of statins in COPD in theprevention of exacerbations. However, statins are well-knownand widely prescribed for their lipid-lowering effects andimproved outcomes related to cardiovascular diseases, includingmortality.

QI was recently diagnosed with COPD. Myoxygen levels are good during thedaytime, but just saw my doc and got the

results of a night time oxygen test. Up and down,but approximately three hours total of below90%. Probably when I’m dreaming, said the doc.Now he wants me to use oxygen at night. I hateit, and not really sure I need it. What do youthink?

A Sleep-related non-apneic oxygen desaturation oftenoccurs in patients not qualifying for long-term oxygentherapy and is considered by many physicians as an

indication for providing nocturnal oxygen therapy. Thisperceived indication stems from the suggestion that the naturalprogression of COPD to its end stages and death may bedependent upon the severity of desaturation occurring duringsleep. However, the clinical benefits of nocturnal oxygentherapy have yet to be confirmed.

Q I am supposed to have an Arterial BloodGas test performed. Is this commonly usedfor COPD testing?

AArterial blood gases (ABGs) are an important routineinvestigation to monitor the acid-base balance ofCOPD patients. They may help indicate the severity of

a condition and help to assess treatment such as long-termoxygen therapy.

Q I’m being considered for lung volumereduction surgery (LVRS). Is this aworthwhile procedure?

ALung volume reduction surgery has been shown tohelp improve breathing ability, lung capacity, andoverall quality of life in very selected COPD patients.

The effectiveness of this surgery depends on the location orextent of the diseased tissue, as well as the patient’s exercisetolerance and ability to tolerate surgery. In some cases, theoptimal procedure is clear but in others, the optimal choicemay not be so clear. A thorough understanding of theindications, contraindications, risks, and benefits of the LVRS,as well as the patient’s goals and preferences, should guide thedecision-making process.

QMy husband has had COPD for 18 years.His FEV-1 is in the Very Severe category.He is having more frequent exacerbations

than years ago and he needs to take prednisonewhen he feels an exacerbation coming on. Hebecomes very moody, angry, and has hatefuloutbursts that come out of nowhere and areusually directed at me. It’s destroying ourmarriage. Are there any recommendations formedications to counter the mood swings ofprednisone?

ANot everybody has mood changes while takingprednisone, and most of the time the effects areconsidered “mild.” Changes in mood—if caused by

prednisone—usually go away once a person stops taking it.Talk to the doctor about the potential for mood swings, andfind out what should be done.

Editor’s note: For more information on Dr. Bourbeau’s LivingWell with COPD program visit www.livingwellwithcopd.com

To preview the first of their new COPD online learningmodules “Preventing your COPD Symptoms” visit:https://youtu.be/0hp2klY7W7U

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Dr. Jean Bourbeau is director of the Center for InnovativeMedicine (CIM) of the Research Institute of the McGill UniversityHealth Centre (MUHC) and director of the PulmonaryRehabilitation Unit. He is past president of the CanadianThoracic Society (CTS) and is a member of the scientific commit-tee of GOLD. He has a research chair in COPD, Living Well withCOPD, and online course lines.

We invite your questions. Please mail questions to Ask Dr. Bourbeau c/oCOPD Canada, 555 Burnhamthorpe Rd., Suite 306, Toronto, Ont. M9C2Y3. Or you can e-mail questions to: AskCOPDCanada@gmail.com

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Pulse: News about COPDOutpatient antibiotic prescribing unchangedn St. Louis/ Over the last three years outpatient antibiotic prescribing in the

United States remained unchanged despite efforts to limit inappropriateantimicrobial use, according to Michael J. Durkin, MD, MPH, an assistantprofessor of medicine at the Washington University School of Medicine, andcolleagues. The data show that further efforts are needed to control antibi-otic use in the context of resistance, the researchers wrote in InfectionControl & Hospital Epidemiology. “The findings of this study are concerningbut more than anything, they give us important insight into the ongoingchallenges of getting health care providers to change their prescribinghabits to help prevent antibiotic resistance,” said Keith Kaye, MD, MPH,president of the Society for Healthcare Epidemiology of America. “While theresources and investments made to identify and raise awareness regardingoveruse of antibiotics are important, they are not enough.” The most com-monly prescribed antibiotic drugs were amoxicillin, amoxicillin/clavulanate,azithromycin, cephalexin and ciprofloxacin.

8 https://tinyurl.com/y9ncvpt2

Effects of household air pollutionon respiratory healthn Albuquerque, N.M./ More than 2.8 billion people worldwide use solid fuel for

cooking, with many more using solid fuels for heating homes, according toa report published recently in the European Respiratory Journal.Combustion of solid fuels in inefficient stoves in poorly ventilated homesleads to household air pollution (HAP). Solid fuels include wood, charcoal,crop residues and animal dung (collectively referred to as biomass fuels),and coal. With inefficient combustion of these solid fuels, a complex mixtureof carbon-based particles, inorganic particles and irritant gases is generat-ed, which shares some characteristics with that of tobacco smoke andincludes carcinogens. Observational studies demonstrate strong associa-tions between exposure to HAP and childhood respiratory tract infections,COPD, lung cancer, cataracts and low birthweight of children, with limitedevidence supporting associations with cardiovascular disease. Peopleexposed to household air demonstrated greater small airways fibrosis butless emphysema compared with cigarette smokers.

8 https://tinyurl.com/ybprp6ru

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Pulse: News about COPDLow back pain in people with COPD n Milan, Italy/ A recent study published in the International Journal of COPD

analyzed gastroesophageal reflux disease (GERD) and low back pain (LBP) inpatients with chronic obstructive pulmonary disease (COPD). The researcherssought to understand the reasons for these comorbidities. The considerationsof the authors are based on the functions and characteristics of the respirato-ry diaphragm that are not always considered in patients. They reported thatbetween 51% and 88% of patients with COPD have at least one comorbiditysuch as cardiovascular pathologies, arthritis, osteoporosis, diabetes andchronic pain. The mechanisms that cause these comorbidities and the preciserelation to the presence of COPD are not entirely clear. Probably, the sys-temic inflammatory nature of COPD favours the natural course of thesecomorbidities. GERD is a comorbidity often found in these patients. It has thepotential of exacerbating the symptoms of COPD while increasing the num-ber of events requiring hospitalization.8 https://tinyurl.com/ydx24wkx

Duration provides stronger risk estimatethan pack-years n London / Smoking burden is frequently measured in pack-years, but the relative

contribution of cigarettes smoked per day versus the number of years smokedtoward the development of structural lung disease, airflow obstruction andfunctional outcomes is not known. The researchers analysed cross-sectionaldata from a large multicentre cohort (COPDGene) of current and formersmokers. Primary outcome was airflow obstruction (FEV1/FVC). Generalizedlinear models were estimated to compare the relative contribution of eachsmoking variable with the outcomes. They estimated linear trends by ciga-rettes/day, smoking duration and pack-years. Results were based on 10,187subjects. The researchers concluded that smoking duration alone providesstronger risk estimates of COPD than the composite index of pack-years.They also stated that cigarette smoking is the strongest risk factor for COPD.The study was recently published in the British Thoracic Society’s journalThorax.8 https://tinyurl.com/y9kcbmwp

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Living with COPD Spring/Summer 2018 • 5

stem cells is the use of bone marrow stem cells (hematopoieticstem cells) to treat certain types of leukemias and lymphomas.However, there is much not yet known about all stem cell typesand how they work. Much more research is needed to safely andeffectively use these in people with other diseases. There are anumber of areas of active research going on. One example is theresearch into finding a way to stimulate organ-specific stem cellsin the body to repair diseased tissue. Another area of researchinvolves isolating stem cells and stimulating them in the laborato-ry to become specialized cells for use in transplantation.

Are stem cell treatments an option for lung disease?In theory, yes in the future. In many lung diseases, cells that makeup the respiratory system are either lost or do not function prop-erly. A stem cell treatment that restores lung cell function mightbe able to reverse or even cure some lung diseases. As of now,there are no proven stem cell treatments for any lung disease.

Who offers unproven stem cell treatments?Unfortunately, there are hundreds of clinics and other groupsoffering unproven stem cell treatments in the U.S. A frequentmethod that they use to treat lung disease involves removing cellsfrom a person’s fat or bone marrow and giving the cells back tothe person through his or her bloodstream. These approacheshave not been proven to work and are not FDA regulated orapproved as accepted treatments for any type of lung disease.This means that the necessary clinical research trials to make surethat these treatments are safe and effective have not been done.Unfortunately, this does not prevent them from being offereddespite unknown risk or benefit.

Do unproven stem cell treatments work for lung disease?There have been promising studies in animal models of lung dis-eases. Yet, there is no reliable evidence that stem cell treatmentsare effective for any lung disease. To date, there have been somelegitimate clinical trials, approved and regulated by the FDA or byappropriate regulatory agencies in other countries. These havebeen done for a number of lung diseases including COPD, acuterespiratory distress syndrome, idiopathic pulmonary fibrosis, and

pulmonary hypertension. These studies have used several differ-ent types of stem cells including mesenchymal stromal cells andendothelial progenitor cells. Initial results suggest that the stemcells used appear to be safe over a short-term period. However,further follow-up is necessary to ensure long term safety.Importantly, none of these studies have shown any beneficialeffect in any lung disease tested so far.

Could unproven stem cell treatments be harmful?Yes, these treatments can be potentially harmful. Potential risksinclude cell embolism (stem cells clotting in the lungs) and thecells causing abnormal growth including tumors. In addition, anumber of clinics are giving treatment in ways that do not meetnormal standards of sterility (to prevent infection) and safety.

What do pulmonologists say about unproven stem cell treatments?Pulmonologists (lung specialists) familiar with the issues ofunproven stem cell therapies for lung diseases are opposed tothis approach. However, many lung specialists are also not yetfamiliar with the field. The American Thoracic Society (ATS)Stem Cell Working Group as well as other professional societieshave developed educational resources for doctors as well as forpatients and their families. All involved are strongly encouragedto read these resources to learn more about stem cells andtheir use. Patients and doctors should take time to learn allthey can about the issues surrounding unproven stem cell therapies.

What do lung disease foundations and patient advocacygroups say about unproven stem cell treatments?A growing number of national and international respiratorydisease societies and patient advocacy groups have takenstrong positions against unproven stem cell therapies. This isalso true for the leading stem cell scientific societies who donot support use of unproven stem cell therapies at this time.All of these groups are trying to educate patients, families,caregivers, and health care professionals about the

An emerging problemcontinued from page 1

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An emerging problem Let’s Boogiecontinued from page 1

potential dangers of treatments.

I suffer from lung disease and I aminterested in stem cell treatments. Whatshould I do?First, talk to your health care providerabout current treatment options. These mayinclude new medications that can slowdown the progression of the disease. Ifthey are unfamiliar with the stem cell field,refer them to the available educationalresources that you are reading. You need tocarefully read all you can as well. Particularpoints to consider and to discuss withyour health care provider are:

1) whether there is any scientific evidenceto support the proposed treatmentapproach for your lung disease; and

2) whether the offered treatment hasbeen studied in a legitimate clinicaltrial.

How can I find if a stem cell treatmentfor lung disease is part of a legitimateclinical trial?The U.S. government compiles a list of allregistered clinical trials in the U.S. andabroad, including clinical trials for stem celltreatments. This can be easily accessed onthe website www.clinicaltrials.gov. You canuse keywords such as “stem cells” and yourlung disease diagnosis such as “chronicobstructive pulmonary disease,” “cysticfibrosis,” or “pulmonary fibrosis” to findclinical trials. However, you should beaware that some clinics offeringunproven stem cell treatments register

their treatments in the ClinicalTrials.govdatabase but have not gone through theproper approvals or inspections. The U.S.government is currently working to tight-en the requirements for any potential newtherapy or clinical trial to be legitimatelylisted on the database. Importantly, peo-ple who are research subjects should notbe charged for participation in clinicaltrials. You should fully discuss any infor-mation you find on the clinicaltrials.govwebsite with your health care provider.The Canadian Clinical Trials* databasecan be accessed through the followingweb site:https://www.canada.ca/en/health-cana-da/services/drugs-health-products/drug-products/health-canada-clinical-trials-database.html

Reprinted with permission of the American ThoracicSociety. Copyright © 2018 American ThoracicSociety.Authors: Laertis Ikonomou, PhD, Angela

Panoskaltsis-Mortari, PhD, D(ABMLI), Darcy E. Wagner,PhD, Robert J. Freishtat, MD, MPH, Daniel J.Weiss,MD, PhD on behalf of the American Thoracic SocietyRespiratory Cell and Molecular Biology Assembly StemCell Working Group: Am J Respir Crit Care Med 2017

Apr 1; 195(7):P13-P14. doi: 10.1164/rccm.1957P13.

The American Journal of Respiratory and Critical CareMedicine is an official journal of the AmericanThoracic Society.

Original article has been edited to inform Canadiansources, where appropriate.

For more information:https://www.atsjournals.org/doi/abs/10.1164/rccm.1957P13

minutes you can definitely feel thatyou got a work out. The dance-based exercising is mixed in withjoy, singing and laughing. One ofthe program sessions has you ges-ture dancing as though you areconducting an orchestra. Anotherhas you going through the motionsof playing baseball. You go at yourown pace. However, this group of30 patients enthusiastically dove in.“Riding on the freeway of love inmy pink Cadillac,” indeed.

The entire “Let’s Boogie” pro-gram is comprised of 16 classes.Participants explore different dancestyles such as ballroom and socialdancing, ballet, jazz, contemporary,elements of free dance/authenticmovement/contact dance, collabo-rative choreography, and mirror-work. Each class includes seatedand standing work, with two restand water breaks and, loads of fun.

For more information on theprogram:https://tinyurl.com/ydxpmjrp

If you think you might be interested in participating in thisdance/exercise study contact:Adnan Wshahadnan.wshah@mail.utoronto.ca

—HR

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Phyllis was born in Beeton,Ont., a small town of about500 people located 45 milesnorth of Toronto. In her teensshe moved to Toronto becausethere was no work in Beeton.Her first job in Toronto was withthe Laura Secord company. Sheworked in the manufacturingplant making chocolates. Aftera relatively short stint there shemoved on to the Bank ofMontreal. Later, she joined herhusband in the rare coinbusiness. Their company, whichhe founded, was called theToronto Coin Centre, locatedon Queen Street. The TorontoCoin Centre was primarily amail order coin exchange forrare coins as well as militarybadges. They worked togetherfor 46 years, until his passing13 years ago. Phyllis has threechildren, all sons. Two are insales, the middle son is ateacher in Los Angeles. Herniece Debbie has moved inwith her and is a greatcompanion who helps Phyllislead an active life. Debbieaccompanies Phyllis aroundtown while shopping and fortrips to and from pulmonaryrehab classes. They wererecently in Clearwater, Florida,where they have a number offriends who are Canadianexpats. “They’re so good tous.”

COPD peoplePhyllis Rosen

Living with COPD Spring/Summer 2018 • 7

Was your husband a numismatist?

A t the time he was. I learned a lotabout coins through the businessbut it’s been a while since he

passed. I haven’t been keeping up on it. When did you realize there wassomething wrong with your health?When I turned 50 my husband took me ona trip to Europe. We flew from Toronto toCopenhagen, Denmark. Then we went toSweden and from there we took a train toGermany. We also went to Vienna, Austriaand ended up in Venice. I had the worsttime breathing so we came home early. Did you get medical help when yougot home?I saw my family doctor right away. Hisdiagnosis was asthma. So, I had asthma for20 years. Eventually my condition worsenedso I was sent to a respirologist who said thatI don’t have asthma, that I have emphysema.At Toronto Western Hospital I saw a secondrespirologist who confirmed that I in facthave emphysema, COPD. That diagnosiswas about three years ago. Were you a smoker?I sure was. I smoked for 50 years. I startedsmoking when I was eighteen. Back then,smoking was like being a movie star. Thewomen would smoke in the movies usingthose long cigarette holders. They looked soglamorous.Did you use a cigarette holder?No, but I did feel a bit glamorous smoking acigarette. You were right with it.Were you a partier?Nope. I never drank. I would even avoidNew Year’s Eve parties because of all thedrunks.

You live near [the former locationof] Honest Ed’s on Bloor Street. Didyou ever meet Ed Mirvish?Many, many times. Great man. He was sogood to the community. Free turkeys atChristmas. A great big birthday party inJuly every year. It seems that all ofToronto came to the birthday party. Freehot dogs, hamburgers, french fries, softdrinks and cake. The kids loved it. Are you retired?Yes. But I still help out with elections. Iwork in the local polling station duringboth provincial and federal elections. So,I’ll be starting up soon as we have aprovincial election coming up in June.Are you involved in the advancedpolling process?We make sure that people can get theirvotes in. Sometimes, for voters who can’tget out, we’ll send two people to theirplace with a ballot. The voter seals the bal-lot, which is then returned to the pollingstation. Are you a religious person?

No, I’m not. I should be I suppose but I’mnot. I think it’s great for people who havefound religion.What’s your favorite food?I’m a traditionalist. I like roast beef withgravy, potatoes and any vegetable. I likemost vegetables.How’s your emphysema now?It’s stable. My spirometry results haven’tchanged over the last two years. My doc-tor says I need to slow down though. Hesays I race around too much. I’ve alwaysbeen a speedy person.

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