Tag Archives: American Thoracic Society

ALPHA-1 is coming to town and Harrison Silverdale’s BB has them!

Alpha-1 is coming to town!  Silverdale to be exact – in the Rose Room at Harrison Silverdale to be more exact – 1:00pm to 3:00pm and we are all excited.

Mark Wednesday, 21 September 2011 for Better Breather’s partnering with Alpha-1 and Free Testing for the Alpha-1, a genetic component of Emphysema (COPD)

“American Thoracic Society (ATS) Guidelines

ATS guidelines recommend testing a broad range of patients with lung conditions:1

All adults with symptomatic emphysema regardless of smoking history

All adults with symptomatic COPD regardless of smoking history

All adults with symptomatic asthma whose airflow obstruction is incompletely reversible after bronchodilator therapy

Asymptomatic patients with persistent obstruction on pulmonary function tests with identifiable risk factors (smoking, occupational exposure, etc.)

Consider testing of asymptomatic individuals with persistent airflow obstruction without risk factors (no smoking or no known occupational exposure, etc.)”

The speaker is Nancy Bartholomew, with Prolastin-C from Grifols Inc.

 

 

I have included this photo taken from ATS “Rare Lung Diseases” because seeing it broke my heart.  It shows a ‘mother and her baby poignantly illustrating the fact that young women can be the victim of rare lung diseases.”

If we do not test, we cannot know and could easily be misdiagnosed and medically treated for the wrong condition.

… taken from American Thoracic Society (ATS) online “Some of the most exciting discoveries in pulmonary medicine have come from studying rare diseases. Insights gained from uncommon lung diseases often shed light on more common lung diseases…”  http://www.thoracic.org/education/breathing-in-america/index.php

Web sites of interest

National Institutes of Health Rare Diseases Clinical Research Network

www.rarediseasesnetwork.org

Orphanet  – About Rare Diseases

www.orpha.net/consor/cgi-bin/Education_AboutRareDiseases.php?Ing=EN

LAM Foundation

www.thelamfoundation.org

Hermansky-Pudlak Syndrome Network

www.hermansky-pudlak.org

Tuberous Sclerosis Alliance

www.tsalliance.org

 

Look for a table and chairs set up and friendly Harrison folks…Joyce is the RRT Harrison volunteer Better Breathers liaison…we are lucky to have her.

Rose Room – Harrison Silverdale

1800 NW Myhre Road – Silverdale, WA 98383

Better Breathers Support Group

“Our Better Breathers support group encompasses community members and their caregivers who live with chronic respiratory disease and lung disease. Better Breathers is designed to provide support, education, networking, and tools to improve the daily lives of those living with these health conditions.

We welcome any community member with asthma, emphysema, chronic bronchitis, sarcoidosis, asbestosis, pulmonary hypertension, pulmonary fibrosis and the many more lung diseases affecting our population, pediatric or adult.

Please email or call if you will need assistance with parking at the meeting.”

Contact: Pamela O’Flynn   – 360-744-6687 – respiratorycare@harrisonmedical.org

 

If anyone needs a ride, contact me.

Thanks for reading… Sharon O’Hara

COPDers Most Accurate Measurement of Disease Severity is the 6-Minute Walk According to Netherlands Study

COPDers (Chronic Obstructive Pulmonary Disease) are familiar with the 6-minute walking test but the following study presented recently at the American Thoracic Society ATS 2011 Denver is the best explanation I’ve seen of what the test result really means in the progression of the disease.

COPD is the 3rd leading cause of death in the US, 5th in the world.   For many of us it means don’t waste time.   Most of us already know we might be short timers based on other folk’s reactions – like my wonderful dentist doesn’t mention fixing my lower teeth – he just kindly replaced the upper teeth insert my dog, Dean chewed up.

Mr. Dean is a notorious thief of night guards (three) and now he is a pick pocket of false teeth inserts.  He can’t be trusted around teeth in an pocket or loose anywhere he can jump.  I thought he wanted petting – ha!  Seven tiny pieces were found scattered in his cushioned pad and carefully carried to Dr. Robinson.

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Harrison Medical Center, Silverdale Better Breather’s (American Lung Association) upcoming meeting is a super place to ask the questions – more about the meeting in Monday’s blog post.

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American Thoracic Society

‘Walking distance’ test an accurate indicator of disease severity in patients with COPD

ATS 2011, DENVER – The six-minute walking distance test (6MWD), a test that measures a patient’s ability to tolerate exercise and physical activity, is an effective tool for understanding disease severity in patients with chronic obstructive pulmonary disease (COPD), according to a three-year global study of patients with COPD sponsored by drug manufacturer GlaxoSmithKline.

“We found that baseline 6MWD was predictive of hospital admission with an acute COPD exacerbation, was relatively stable in milder COPD, and has a steady rate of decline in patients with severe disease,” said study author Martijn Spruit, PhD, scientific advisor and research leader at the Centre of Expertise for Chronic Organ Failure (CIRO+) in Horn, the Netherlands. “This confirms prior observations that the results of the 6MWD are related to the risk of death in patients with COPD, and that the test is a useful tool in understanding disease severity in patients with COPD.”

Researchers studied 2,110 patients with moderate to severe COPD who underwent a supervised 6MWD at study enrollment to provide a baseline value and annually for 3 years. Death and exacerbation-related hospitalization were recorded.

During 3 years of observation, 200 patients died and 650 were hospitalized for exacerbations. Mortality rates and exacerbation-related hospitalization were higher in COPD patients as baseline 6MWD decreased. Researchers found that a 6MWD threshold of 357 meters was optimal to predict increased risk of hospitalization; while a 6MWD threshold of 334 meters was optimal to predict an increased risk of death. The mean rate of deterioration of the 6MWD was 5.7 meters per year and was primarily limited by the ability of the patient to breathe easily.

“Exercise tolerance is an important clinical aspect of COPD which can be easily and reliably measured with the 6MWD test,” Dr. Spruit said. “These data confirm the power of the 6MWD to identify subsets of the COPD population at higher risk of exacerbation-related hospitalization or death.

“The ability to group COPD patients according to their functional status disease severity should enable healthcare providers to better tailor therapy for their patients and optimize use of medical resources,” he added. “Patient grouping is also useful for those designing interventional studies in COPD; for example, if the aim of an intervention were to reduce the rate of exacerbation related admission, then a study can be designed by including primarily patients at higher risk of that outcome.”

Dr. Spruit also noted that the 6MWD test offers benefits over a more traditional test of COPD disease severity, the FEV1 (forced expiratory volume in the first second) which measures a patient’s ability to forcefully exhale air in one second. “The FEV1 has limitations as a marker of disease severity in COPD because it fails to capture systemic manifestations of the disease,” he said. “This study was designed to determine if the 6MWD could be an additional measure of disease severity, and the results confirmed that it can.”

(I exhale to just this side of fainting to get the best results – results hinge on the patient’s effort)

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“Reduced 6MWD Is Associated With Increased Mortality And Exacerbation-Related Hospitalization In COPD: The Eclipse Study” (Session A93, Sunday, May 15, 2:00-4:30 p.m., Room 505-506-507 (Street Level), Colorado Convention Center; Abstract 17736)

* Please note that numbers in this release may differ slightly from those in the abstract. Many of these investigations are ongoing; the release represents the most up-to-date data available at press time.

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http://patients.thoracic.org/

http://www.thoracic.org/

Thanks for reading… Sharon O’Hara

University of Washington Medical Center Excellance v Danish Air Pollution Study

Ah HA!  Ah, YES!  Air pollution does matter – finally a study proving it.

I like teaching hospitals – the attitude, the open and curious mindset that the body is more than one organ and the friendly, hospitable attitude of the medical professionals and employees is key to a patients – THIS patient – sense of wellbeing..

One of the best teaching hospitals in the nation according to US News and World Report is the University of Washington Medical Center, right across the pond from us here in Kitsap County and where I go for several medical conditions.

In all the years I’ve gone there and parked in the underground parking garage, I’ve never had a reaction to the normal car emissions.  The air seems to flow and dissipate the normal car smells.  Not so at the UWMC’s Roosevelt Building 11.

Yesterday, I had an appointment at the UWMC’s Roosevelt Building 11 and for the first time did not park in the underground parking but asked my husband to drop me off at the street level front door.

The past odor of the warm choking toxic stench in the underground garage is so bad, my eyes water.  My husband says he has never noticed the poor air quality down there but I do.

What does an air quality test show?  I called to ask.

I didn’t call to complain about the warm choking smother and forced inhaled sting of the air toxins the first or even second time we parked there – after all it IS underground parking.  When I did finally call  and did get the right person to ask when they had their last air quality check, I was politely told no one else had ever complained about it but she would find out for me.

About a month later she called to tell me what I smell must be from the helicopter landing emissions and that sometimes she even smells it in her office.

Well, how about a better filter on the helicopter or the parking garage to protect the people who park there AND work in the offices who sometimes smell it…although once inside the building, I’ve never smelled those toxins.

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Air Pollution Exposure Increases Risk of Severe COPD

ScienceDaily (Nov. 5, 2010) — Long term exposure to low-level air pollution may increase the risk of severe chronic obstructive pulmonary disease (COPD), according to researcher s in Denmark. While acute exposure of several days to high level air pollution was known to be a risk factor for exacerbation in pre-existing COPD, until now there had been no studies linking long-term air pollution exposure to the development or progression of the disease.

The research was published online ahead of the print edition of the American Thoracic Society’s American Journal of Respiratory and Critical Care Medicine.

“Our findings have significance on a number of levels,” said lead researcher on the study, Zorana Andersen, Ph.D., post doctoral fellow at the Institute of Cancer Epidemiology of the Danish Cancer Society in Copenhagen. “Patients, primary care physicians, pulmonologists and public health officials should all take not of our findings.”

Dr. Andersen and colleagues used data from the Danish Diet, Cancer, and Health Study, which consisted of more than 57,000 individuals between the ages of 50 and 64 who lived in Copenhagen or Aarhus, the first and second largest cities in Denmark, between 1993 and 1997. A self-administered questionnaire provided data on smoking, dietary habits, education, occupational history and lifestyle. They then used the unique personal identifiers to link the cohort to the Danish Hospital Discharge Register to identify hospital admissions and discharges due to COPD, and estimated pollution exposure by linking residential addresses to outdoor levels of NO2 and NOx levels, which were used to approximate the overall level of traffic-related pollutants since 1971. They looked at exposures over 15-, 25- and 35-year periods to assess the effect of different exposure lengths on COPD incidence. Data for more than 52,000 were available from the start 1971 to the end of follow-up in 2006.

“We found significant positive associations between levels of all air pollution proxies and COPD incidence,” said Dr. Andersen. “When we adjusted for smoking status and other confounding factors, the association remained significant, indicating that long-term pollution exposure likely is a true risk factor for developing COPD.”

These associations were slightly stronger for men, obese patients and those eating less than 240 grams of fruit each day (approximately eight ounces, or just more than a single serving). But notably, the effect of air pollution on COPD was strongest in people with pre-existing diabetes and asthma.

“These results are in agreement with those of other cross-sectional studies on COPD and air pollution, and longitudinal studies of air pollution and lung function, and strengthen the conclusion that air pollution is a causal agent in development of COPD,” said Dr. Andersen.

Because the study used hospital admissions for COPD to assess incidence, it is likely that the true incidence was underestimated, and that the cases represented severe COPD, as mild and moderate COPD does not often require hospitalization. This means that the reported increase in risk associated with air pollution is probably an underestimate of the true increase in risk for COPD in general. Furthermore, while smoking is known to be the primary cause of COPD in developed countries, and majority of COPD cases were smokers or previous smokers, the effect of pollution exposure was also observed in the group of non-smokers. “This result refutes the possibility that the observed effect of air pollution was due to inadequate adjustment for smoking in our data and supports the idea that air pollution affects COPD risk, irrespective of smoking status,” said Dr. Andersen.

The enhanced association between increased risk of COPD and air pollution in asthmatics and diabetics suggests the possibility of an underlying link. “It is plausible that airflow obstruction and hyper-responsiveness in people with asthma, or systemic inflammation in people with diabetes, can lead to increased susceptibility of the lung to air pollution, resulting in airway inflammation and progression of COPD, but more research is needed in this area.” said Dr. Andersen.

“In any case, sufficient data, including the results of this study, provide evidence that traffic-related urban air pollution contributes to the burden of COPD and that reductions in traffic emissions would be beneficial to public health.”

The above story is reprinted (with editorial adaptations by ScienceDaily staff) from materials provided by American Thoracic Society, via EurekAlert!, a service of AAAS.

Journal Reference:

1. Z. J. Andersen, M. Hvidberg, S. S. Jensen, M. Ketzel, S. Loft, M. Sorensen, A. Tjonneland, K. Overvad, O. Raaschou-Nielsen. Chronic Obstructive Pulmonary Disease and Long-Term Exposure to Traffic-Related Air Pollution: A Cohort Study. American Journal of Respiratory and Critical Care Medicine, 2010; DOI: 10.1164/rccm.201006-0937OC

http://www.sciencedaily.com/releases/2010/10/101019111536.htm

More later (part 1 of 3 photo story of one patients Lymphedema)  Sharon O’Hara

Why Pay $150,000 Year for a Lung Drug if it Does Not Work?

The Apha 1 group comprises about 10% of COPDers but they are the group who has made great organizational strides in bringing public awareness to COPD (Chronic Obstructive Pulmonary Disease)
They are politically astute and I like most of the folks I’ve met in the organization.

That said… the idea of paying $150,000. a year per person for a drug that, at best, does nothing for the patient is OUTRAGEOUS!

There is little to no research being done for regular COPDers…if this study is accurate, why can’t we use that wasted $150,000. Per patient for RESEARCH?

Roll the drug manufactures out of the profit at any cost bed and use the money where it will do the most good for the most people.
Why not?!

I am including the following verbatim for obvious reasons.

Wasted drug dollars? NO!
Research dollars for the COPD majority benefit? YES!

“Pricey lung disease drugs have no benefit: study

URL of this page: http://www.nlm.nih.gov/medlineplus/news/fullstory_100767.html (*this news item will not be available after 10/04/2010)

Tuesday, July 6, 2010
By Kate Kelland
LONDON (Reuters) – Recommendations for expensive treatments made for a genetic disorder called alpha-1 antitrypsin deficiency should be withdrawn because the drugs have no benefit, scientists said on Wednesday.

The disorder causes chronic lung disease and researchers who reviewed data from two trials on 140 patients with it found no evidence that alpha-1 antitrypsin medicines — made by various drugmakers including Talecris, Kamada, CSL and Baxter — do any good.

Based on this evidence, the researchers said the treatment, which costs up to $150,000 a year in the United States, should not be recommended by doctors and advocacy groups.

“The drug has not shown any clinical benefit, is extremely costly and has important adverse effects,” said lead researcher Peter Gotzsche of the Nordic Cochrane Center at Rigshospitalet in Copenhagen, Denmark.

“In view of the lack of evidence and high cost of treatment, treating alpha-1 antitrypsin deficiency by replacement therapy cannot be recommended.”

According to the team, whose work was published in The Cochrane Library journal, recommendations by the American Thoracic Society and European Respiratory Society that promote alpha-1 antitrypsin replacement are “misguided”.

“Both societies recommend augmentation therapy for patients with breathing problems related to alfa-1 antitrypsin deficiency. In our opinion, these recommendations are not reasonable,” said Gotzsche.

Alpha-1 antitrypsin deficiency affects less than one in 1,600 people. Those who inherit the disorder have low levels of the protein alpha-1 antitrypsin, also called alpha-1 proteinase inhibitor, which protects the tissue of the lungs from destruction by the body’s own white blood cells.

At a relatively young age, this can result in symptoms of emphysema, including shortness of breath and wheezing.

The aim of alpha-1 antitrypsin replacement therapy is to give the patient back the protective protein they are missing. This should limit damage to lungs and, ultimately, prevent early death. The protein is usually extracted from blood donated by healthy volunteers.

The researchers reviewed data from two trials involving a total of 140 people with the disorder, all of whom were at a high genetic risk of developing chronic lung disease.

In one trial, patients were given intravenous alpha-1 antitrypsin or a placebo every four weeks for three years and in the other, the treatment or a placebo was given weekly for a minimum of two years.

There was no difference between treatment and control groups in terms of exacerbations of lung disease, or quality of life, the researchers found. Combining the results from the trials, Gotzsche’s team also found no evidence of a clinically important effect on lung function.

“Indeed the results suggested modest harm, or at best no effect,” they wrote in their study. They added that while the treatment might cause a reduction in the deterioration of lung appearance on CT scan, it was “not clear whether this is a clinically meaningful difference.”

http://www.nlm.nih.gov/medlineplus/print/news/fullstory_100767.html

More later… Sharon O’Hara

Smokers and Wood Smoke Slow Dance to the Embracing COPD Rumba!

Interesting study!
Why?
Three reasons.
1. Because I smoked 40 years.
2. From 1978 to approximately 1989 we heated almost exclusively with a wood burning stove fireplace insert. I loved the warmth of the wood heat and smell of the wood.
3. I smoked inside the house for the first five years.

We had all electric baseboard heat…but rarely used it.

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“First Study on Wood Smoke Effects on COPD in US

ALBUQUERQUE, NM–(Marketwire – July 1, 2010) – The nation’s first scientific study on the effects of wood smoke in smokers shows that wood smoke is associated with chronic obstructive pulmonary disease (COPD), and has identified a link that increases the risk for reduced lung function in cigarette smokers. That exposure to wood smoke causes COPD was previously found to be common in women in developing countries, but has not been recognized as being a hazard at concentrations generally found in developed countries.

The objective was to evaluate the risk of wood smoke for COPD in a population of smokers in the United States, and whether non-hereditary changes of DNA that were detected in sputum samples of these patients were correlated to the disease of COPD as shown by the destruction of lung function.

The association between wood smoke and reduced lung function was stronger among current cigarette smokers, non-Hispanic whites and men.

Lead investigators at Lovelace Respiratory Research Institute (LRRI) in New Mexico, the only dedicated respiratory research center in the US, in collaboration with the University of New Mexico School of Medicine and the University of Colorado at Denver, conducted the study which was financed by the appropriation from the Tobacco Settlement Fund, and from the National Institutes of Health (NIH).

The findings were recently published in the American Journal of Respiratory Critical Care Medicine, a publication by the American Thoracic Society.

Yohannes Tesfaigzi, Ph.D., Senior Scientist at LRRI based in ABQ, NM and lead investigator, said, “The findings are significant and timely because it shows that there are many factors that reduce lung function in the world today.” Tesfaigzi continued, “Our findings suggest that smokers of cigarettes who are exposed to wood smoke increase their risk of having reduced lung function.”…”

Thanks Linda Watson, EFFORTS, for the information. WWW.emphysema.net

http://www.marketwire.com/press-release/First-Study-Ever-on-Effect-Wood-Smoke-Smokers-Conducted-Lovelace-Respiratory-Research-1284773.htm

More Later…. Sharon O’Hara

The Annual ATS Conference and COPD Dutch Study Rocks!

Remember that a local pulmonary doctor was ahead of the Chronic Obstructive Pulmonary Disease (COPD) and EXERCISE debate over a decade ago.

The American Thoracic Society (ATS) recent annual meeting in San Diego brought out new study results from Dutch researcher, Annemie Schols, Ph.D., of the Maastricht University Medical Center in the Netherland, according to MedPage Today.

“”I think we should shift toward a personalized lifestyle intervention” for less-advanced patients, Dr. Schols told reporters.”
The long overdue study showed that pulmonary rehab for COPDers less advanced in the disease is both cost effective and had significant health benefits adding to the COPDer quality of life.
(“Note that this study was published as an abstract and presented at a conference. These data and conclusions should be considered to be preliminary until published in a peer-reviewed journal”).

Over a decade ago, in the waiting room of my first pulmonologist, I picked up a brochure offering local pulmonary rehabilitation for lung patients. Well, that was me, a formally fit person who had trouble breathing when I moved. Ignorance made me slow down and I stopped moving much.

When I got in to see the doctor, I asked his nurse what she thought about the program and she surprised me. “Oh, no,” she said, “you don’t qualify. You aren’t advanced enough for pulmonary rehab.”

Disappointed, when I saw the doctor, I showed him the brochure and asked what good a pulmonary rehab program was, if, to qualify, the patient had to be so far gone they have one foot on a banana peel and the other in a grave? I asked why it wasn’t possible for me and people like me to go through such a program before we reached that point.
“It is possible and I’ll make it happen,” he promised. He did make Capri rehab possible for me and I will forever be grateful to him for that..

At rehab, one older man shuffled in pulling his oxygen tank and walker and had to be steadied and helped on and off the machines. I admired him and the other unsteady patients for their efforts, but I marveled at the patience and helpfulness of the staff.

I lived in another county then and drove over an hour each way two or three times a week to attend the rehab. Sometime during the program, I had a sudden decrease in breathing ability, a setback. The pulmonologist gave me a new prescription for another medication, inhaled steroids. He offered no explanation, but would have answered questions had I known what to ask.

Additional great news from the ATS Conference, according to MedPage Today, Dennis Doherty, M.D., moderated a press conference to discuss the study and announce the Centers for Medicare and Medicaid Services must have a fee schedule in place by January 2010. The motivator is for planned changes in reimbursement for pulmonary rehabilitation programs, leading, I hope, to increased early rehab programs in the U.S. Yes!

Dr. Doherty added that the Dutch study was “unusual in that very few interventions show a four-point improvement on the St. George’s scale. “It’s tremendously difficult in these patients,” he said.”

Over a decade ago, one of our pulmonologist already knew COPDers needed rehabilitation early on. Moreover, he made rehab a reality for at least one of his earlier stage patients. Wherever you are, doctor, thank you for that.

To all the doctors who take the extra time to advise their patients how they can help his or herself improve their own quality of life, thank you.