Alpha-1 Awareness: #AreYou1?

November 24th, 2014 | Author: Fabiana Beltran

At least 100,000 Americans live with Alpha-1 Antitrypsin Deficiency (Alpha-1), but fewer than 10% have been diagnosed. Alpha-1 is the most common known genetic risk factor for emphysema. Are you 1? That is the question the Alpha-1 Foundation is asking YOU for COPD/Alpha-1 Awareness Month.

Take part in the  Alpha-1 activities happening this month!

  • As part of the “I am 1. Are you?” awareness campaign, the Alpha-1 Foundation wants you to record a video of yourself or a loved one and post it on Facebook and/or other social media sites. Make sure to use the hashtag #AreYou1 and include a link to alpha-1foundation.org/awareness.

  • Participate in the Alpha-1 Art Auction! In November 2013, NASCAR drivers showed their artistic side for Alpha-1 Awareness when they created art alongside children living with Alpha-1. Now you have a chance to bid on their creations! Proceeds will benefit the Alpha-1 Foundation’s research programs.

Take a look at the artwork and participate in the auction here.

Spread the word about Alpha-1 by downloading the fact sheets below and sharing with friends and family. Don’t  forget to ask - #AreYou1?

Fact Sheets:

The Portable Oxygen Concentrator Dilemma

November 21st, 2014 | Author: Fabiana Beltran

This opinion piece was written and submitted by COPD community member, Tony St. Amant of Chico, California.

The other day I received an email announcing a portable oxygen concentrator (POC) weighing less than two pounds with a battery life of three hours, and even longer with supplemental batteries. Wow! A two pound oxygen source that could operate for three hours or more! Absolutely dazzling to anyone who has been tethered by supplemental oxygen for any length of time–except, the devil is in the details.

I scanned the manufacturer’s product webpage to find out how much oxygen this little dynamo can provide, but it’s not there. There is only an indirect reference to a “2 pulse setting.” What in heaven’s name does that mean? Is it a shadowy implication that this little baby can output 2 liters per minute (LPM)? If not, what does the “2” mean? I need to know, so I start digging through the support literature. The cut sheet is no help. It contains substantially the same info as the web page.

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[lublockonline.com]

Finally, I find the Patient Manual—you know, the document you normally read after the unit is bought, paid for, and delivered. And there it is, on page 30 of the 40 page manual, almost an answer. Each pulse delivers 17.25 milliliters (ml) ± 10%. But, unlike most pulse dose specifications I’ve seen over the years, this one doesn’t specify a respiration rate. Will it deliver that pulse dose at 10 breaths a minute, 15, 20, more? There can be a world of difference in the unit’s therapeutic value.

So let’s take a look at what I will call best case oxygen output. Let’s assume the machine is operating at the upper boundary of output: 17.25ml + 10%. That would be 18.975ml per pulse. If it will provide that output at a fairly normal resting rate of 15 breaths per minute, its total output would be about 285ml per minute or about .3 liters per minute. If it will provide that output at a somewhat elevated respiration rate of 20 breaths per minute, its total output would be about 380ml per minute or about .38 liters per minute. But who knows? That information is not disclosed. And what’s the real value of a two-pound $2,000+ POC that might be insufficient under mild exertion?

Of course, it’s not as simple as that. A person who has a prescription for 2 LPM continuous doesn’t actually inhale two liters of output from any oxygen source. The actual amount inhaled is dependent on respiration rate and other factors. But there is no industry or government standard for comparing pulse to continuous flows. Additionally, a POC that delivers a nominal continuous flow of 2 LPM doesn’t actually deliver 2 LPM of oxygen. For POCs, oxygen is normally somewhere between 87 and 95 percent of the flow. Therefore, the oxygen delivered at 2 LPM continuous flow is typically between 1.74 and 1.9 LPM.

So if you have an oxygen prescription for as little as 2 LPM, will this hyped up pulse-flow mini-POC meet that requirement? It’s not clear at all that it will, nor is the real pulse flow equivalency clear for any other POC. And even if the POC will deliver 2 LPM of oxygen at rest, will it deliver it at an elevated respiration rate during physical activity? The only information available to the potential POC buyer is that published by each manufacturer, with no assurance that the basis for the information is consistent between manufacturers.

If “buyer beware” ever applied to any market, it applies to the POC market. If you’re shopping for a POC, good luck. Please hope with me that the U.S. Food and Drug Administration or the industry will come up with standards that will help individuals with COPD accurately match their needs with POC oxygen output.

-Tony St. Amant
Chico, CA

COPD Awareness Month – Still Going Strong

November 20th, 2014 | Author: Fabiana Beltran

It has been a busy month for us at the COPD Foundation. As you probably know, November is National COPD/Alpha-1 Awareness Month! How have you been raising awareness of COPD to your friends, family, and community?

We still have more than a week of COPD Awareness Month left! Don’t forget to wear ORANGE, the official color of COPD, and take part in COPD Foundation activities: COPD360ourcommunityonline_AAcard

Use #Tell10 to encourage your friends and family to tell at least 10 people every day about this devastating disease.
#Tell10 people about COPD every day for COPD Awareness Month. Strength in numbers: because we are stronger when we work together.

Our Veterans: an At-Risk Population for COPD

November 11th, 2014 | Author: Fabiana Beltran

Happy Veterans Day from the COPD Foundation!

We are deeply grateful to those who have sacrified for our country to protect and uphold American ideals and freedom. We honor all military veterans today and extend a heartfelt “Thank You” for their service.

Did you know veterans face a higher risk of developing COPD?

You might be surprised to learn that:

  • Veterans are 3x more likely to develop COPD than the civilian populationimages-of-veterans-day
  • COPD is the fifth most prevalent disease in the veteran population
  • COPD affects approximately 15% of Department of Veterans Affairs healthcare users

In the article, “Fighting for Air: Veterans Face Higher Risk for Developing Lung Diseases,” the author, COPD Foundation president John W. Walsh, states that COPD is a growing health concern for military veterans. He says that some soldiers have faced, “… a barrage of respiratory exposure,” such as:

  • Smoke from burn pits
  • Aerosolized metals and chemicals
  • Outdoor aeroallergens like date pollen
  • Indoor aeroallergens like mold aspergillus

With these environmental hazards in mind, we urge veterans who are symptomatic of COPD to get an annual “spirometry” or breathing test.

We want to help those who have given up so much for us, and hope all veterans will take action during November’s COPD Awareness Month by getting screened for COPD.

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