Call for Repiratory patient organisation representatives to join the European Medicines Agency's management board

Dear Respiratory friends, this is speacial call for Respiratory Patient Organisations!
The Health and Food Safety Directorate-General of the European Commission has launched a call for expressions of interest to represent civil society in the Management Board of the European Medicines Agency (EMA).

http://ec.europa.eu/health/documents/public_call/call_index_en.htm

Two members representing patients’ organisations, one member representing healthcare professionals’ organisations and one member representing veterinarians’ organisations will be appointed for a renewable three-year period. The term of office of the current members expires on 20 March 2016.
Further details, including information on the assessment criteria and the application procedure, can be found on the Commission’s website.

Millions of smokers have undiagnosed COPD

More than half of smokers with normal spirometry had some form of respiratory-related impairment associated with COPD, Dr. Elizabeth A. Regan and the Genetic Epidemiology of COPD (COPDGene) investigators reported in JAMA Internal Medicine.

The findings imply that up to 35 million current and former smokers older than age 55 years in the United States may have some form of respiratory-related impairment associated with COPD that has gone undiagnosed with standard spirometry, the researchers wrote (JAMA Internal Med. 2015 June 22 (doi:10.1001/jamainternmed.2015.2735). 

They found that 55% of current and former smokers older than age 55 years in the study who did not meet the spirometric criteria for COPD (GOLD [Global Initiative for Chronic Obstructive Lung Disease] 0 score) had significant respiratory disease. Their conclusion was based on seven metrics: chronic bronchitis (seen in 12.6% of the GOLD 0 participants), history of severe respiratory exacerbations (seen in 4.3%), dyspnea score of at least 2 (seen in 23.5%), quantitative emphysema exceeding 5% (seen in 9.8%), quantitative gas trapping exceeding 20%, (seen in 12.2%), St. George’s Respiratory Questionnaire (SGRQ) total score exceeding 25 (seen in 26%), and a 6-minute walk distance of less than 350 m (seen in 15.4%).

In 108 never smokers, none had chronic bronchitis or respiratory exacerbations, 3.7% had dyspnea, 8.3% had quantitative emphysema exceeding 5%, 10.2% had quantitative gas trapping exceeding 20%, 3.7% had SGRQ scores above 25, and 3.7% had a 6-minute walk distance of less than 350 m.

Dr. Regan of National Jewish Health and the University of Colorado, Denver, and her associates gathered data from 21 sites across the United States regarding 8,872 current or former smokers who were between the ages of 45 and 80 years and were classified using GOLD spirometric criteria based on postbronchodilator spirometry: 4,388 had a GOLD 0 score, defined as a normal postbronchodilator ratio of FEV₁ to forced vital capacity exceeding 0.7 and an FEV₁ percentage of at least 80% predicted; 794 patients had a GOLD 1 score, defined as mild COPD; and 3,690 had a GOLD 2-4 score, defined as moderate to severe COPD.

Compared with 108 never smokers, the GOLD 0 group had a worse quality of life score (mean SGRQ total score 17.6 for GOLD 0 and 7 for never smokers) and a lower 6-minute walk distance (447 m vs. 493 m). In a subset of 300 patients in the GOLD 0 group whose CT scans were visually scored, 42% (127) had evidence of emphysema or airway thickening. In a subset of 100 never smokers, 10% had evidence of emphysema or airway thickening.

Current guidelines do not include treating smokers with normal spirometry, but physicians recognize the role of medication in treating symptoms and effective treatments need to be determined for GOLD 0 patients, the researchers said. Respiratory medications were being prescribed to 20% of the GOLD 0 participants in COPDGene who had at least one impairment, yet these patients reported more symptoms.

COPD: The Differences Between The Diseases We Donate To, And The Diseases That Kill Us

Julia Belluz created the infographic below to compare how much money is donated to fight various disease and how many people in the USA die from those same diseases. She wrote: The choices we make about where to donate money for health causes aren't always rational. We are probably more often driven to give by a disease that has touched a loved one than by utilitarian calculations about which illnesses impact the most people or receive the least investment from pharmaceutical companies.

You can see COPD discrepancy on the graphic which is pretty striking, and certainly worth thinking about!

There are no important and less important diseases, but we can see this simplistic approach in health care systems all over the world!

2014 International Guidelines on COPD: Update of Global Initiative GOLD

Dear Respiratory friends today was launched Global Strategy for the Diagnosis, Management and Prevention of COPD, Global Initiative for Chronic Obstructive Lung Disease (GOLD) 2014! It is the last update of the most important global guidelines on COPD! 

The GOLD report is presented as a “strategy document” for health care professionals to use as a tool to implement effective management programs based on available health care systems. The quadrant management strategy tool is designed to be used in any clinical setting; it draws together a measure of the impact of the patient’s symptoms and an assessment of the patient’s risk of having a serious adverse health event in the future. More and more evidence is being produced to evaluate this strategy. Evidence will continue to be evaluated by the GOLD committees and management strategy recommendations modified as required.

World COPD Day 2013 is under corner

Dear Respiratory friends World COPD Day 2013 is under corner!!! Join our Social Media event: World COPD Day 2013 on Respiratory Decade!!

or direct link:

https://www.facebook.com/events/231327290364322/

Efforts to improve early diagnosis, develop new treatments, and better predict patients’ prognoses are leading to renewed optimism in the fight against one of the world’s most prevalent respiratory diseases.

The illness, chronic obstructive pulmonary disease (COPD), is a non-communicable lung disease that progressively robs sufferers of breath. COPD is the fourth leading cause of death worldwide, causing more than 3 million deaths every year, and up to half of people with the disease don’t know they have it.

20 November 2013 is the twelfth annual World COPD Day, an event held each November to raise awareness of COPD worldwide. This year’s World COPD Day theme, “It’s not too late,” emphasizes the meaningful actions people can take to improve their respiratory health, at any stage before or after a COPD diagnosis.

AMERICAN COLLEGE OF PHYSICIANS RECOMMENDS THE DOCTORS DO NOT ACCEPT REQUESTS FOR FRIENDSHIP OF PATIENTS BY NETWORKS

Physicians should avoid accepting as "friend" requests from former or current patients through social networks, according to a new statement issued by the American College of Physicians (ACP), together with Federation of State Medical Boards (FSMB) at its annual meeting in the U.S., last Friday. Pages business or group medical practices are acceptable, but doctors should keep this separate from their personal pages.

While social networks may provide benefits in the doctor-patient relationship, they can also present ethical problems. In a survey of state boards of health in the U.S., 92% received complaints about the behavior of the doctors on the Internet, which led to actions including revocation of license.

According to the document, the physician should respect five principles:
- Protect the confidence, confidentiality, privacy and respect in online communications with patients;
- Maintain professional and social spheres independent online but act professionally in both
- Use e-mail and other electronic communications only in doctor-patient relationships established;
- Make a "self-audit" to determine the periodic accuracy of the information available online;
- Be aware that online postings may have other implications for their professional lives.

Do you agree with these principles?

SICK LUNGS DON'T SHOW

Dear Respiratory Friends we are publishing today Edna Fiore text about COPD, she is very good advocate for COPD!

Sick Lungs Don't Show I may not look sick, BUT…...I have Chronic Obstructive Pulmonary Disease (COPD) What is COPD? It includes such illnesses as emphysema, chronic bronchitis and sometimes asthma. It is primarily characterized by extreme shortness of breath. 

LIVING WITH COPD IS VERY RESTRICTIVE: It means having to avoid strong odors, smoke, flowers, perfumes, cleaning agents, paints, solvents, vehicle exhaust, shaving lotion, bath powders, and incense. I also have to avoid temperature extremes or wind, crowds, molds, and dusty places because they make me short of breath. 

PHYSICALLY: Living with COPD can mean having difficulty walking up stairs or inclines, not walking very far, being unable to rush or "being rushed" tiring easily--especially if things last too long, being unable to tolerate tight clothing and the inability to talk for any length of time. 

SOCIALLY: Living with COPD can mean coughing in public which attracts attention and embarrasses me, having to use or wear devices or equipment, or take medication which invites public comment (oxygen, cold weather masks, inhalers), being concerned (often excessively) about contact with cold or flu germs, and having my friends make short, pleasant, smokeless visits. EMOTIONALLY: Living with COPD can mean crying easily, angering easily, becoming frustrated and impatient because I can't do the things I used to do. Feeling resentful when others tell me, "You don't look sick." It can cause me to be panicky and tense, and becoming dependent and demanding because it's frightening when I can't breathe. 

COPD AFFECTS MY FAMILY. By having to adapt to my physical, emotional, social and environmental needs and limitations, often having to leave social functions earlier than they wish because of me or sometimes never getting there and by having to check out all of the details in advance, getting places early and all the while having to remain calm and reassuring at all times on my account REMEMBER: I may not look sick but-- SICK LUNGS DON'T SHOW!!!