Posts in the General Category

Danger: Bidding Ahead

April 16th, 2014 | Author: Rebecca Rudolph

Like many COPD patients nationwide, you may have experienced trouble accessing home oxygen equipment due to the Centers for Medicare and Medicaid (CMS) program called competitive bidding. This alarming practice has prevented members of our community from accessing life-saving therapies. The COPD Foundation wants you to know we are on it.

What is Competitive Bidding?

Competitive bidding is changing the way that CMS pays for home oxygen supplies. It requires durable medical equipment (DME) companies to apply and be awarded contracts by CMS in order to be providers

(www.rjhedges.com)

(www.rjhedges.com)

for CMS patients. We have seen firsthand how the competitive bidding process has negatively impacted the COPD community by preventing access and causing anxiety among patients, caregivers, and their healthcare providers.

We have been working hard on the competitive bidding issue for two years, but gridlock in Congress has prevented the passage of legislation – making change in the healthcare system difficult. As a result, we have decided to speak directly to CMS through a process known as “submitting comments.”

Why We Have Submitted Comments

There are many benefits to submitting comments to CMS:

  • Comments are an effective way to inform CMS about the negative implications of competitive bidding to patients;
  • CMS takes all comments, including the patient voice, into sincere consideration when making decisions on programs and policy; and, CMS is required by law to respond to all comments as final decisions are made on its’ programs.

Outside of submitting comments to CMS, the COPD Foundation is also lobbying in support of H.R. 1717, the Medicare DMEPOS Pricing Program Act of 2013, which proposes an alternative to the competitive bidding program. Find more information about the bill here.

All COPD patients, or those interested in the issue, should visit our Issue Central page where you can read the comments and sign-on letter.

If you have experienced difficulty accessing your home medical equipment contact the C.O.P.D. Information Line (1-866-316-2673). Our Information Line associates will then officially file the complaint with Centers for Medicare and Medicaid Services.

Help us help you by completing this survey.

What is COPD? Share Your COPD Knowledge

March 17th, 2014 | Author: Katelyn Turner

You know the stats:

  • COPD is the third leading cause of death in the U.S.
  • 24 million Americans have COPD
  • 12 million Americans remain undiagnosed
  • COPD takes 1 life every 4 minutes

We’ve taken the stats you know about COPD, and put them into an easy-to-understand video, intended to encourage individuals to get their lung health tested through our 5-question Risk Screener.

We ask that you share this video with your colleagues, friends, caregivers, spouses, family members, neighbors–anyone you think it would help. Education is key to the management and treatment of COPD.

To learn more, please visit the COPD Foundation website, or call the C.O.P.D. Information Line at (866) 316-COPD (2673).

Shaming and Blaming

March 7th, 2014 | Author: Fabiana Talbot

The dreaded question for individuals living with COPD is “Did you smoke?” So much is insinuated in three simple words, and so many in our community have to withstand the stigma associated with the disease.  All too often, people with COPD are afraid to reach out for help, let alone raise awareness for the disease, because they believe in the end they will be shamed and blamed for smoking.

Smoking does cause 75% of COPD – but did you know that 25% of COPD patients have never smoked? Environmental,

(taken from Pinterest.com)

(taken from Pinterest.com)

occupational, and genetic factors also cause respiratory diseases.  If you did or do smoke however, know that you are not alone. If you feel stigmatized for your condition, just reach out to our COPD community on Facebook or call the C.O.P.D. Information Line at 1 866 316 2673. What is important now is not to look at the past with regret and shame, but to the future with strength and hope. No one has the right to take that away from you.

This leads me to a piece of news that broke this week. Online news site, Mail Online, reported that late actress Shirley Temple Black was, “…a secret smoker who died from lung disease.” When she passed last month, her family did not disclose COPD as the cause of death, perhaps out of fear that she might be stigmatized for smoking.

This is just one example of an individual who had to live in silence about a disease that is the third leading cause of death in the United States. We hope those living with COPD today will come out of the shadows and help educate others about the nature of the disease. We believe the “shame and blame” culture will decline over time with greater awareness and education about the disease.

We are proud of all of our community members who speak out about COPD, and have the courage to stand up to those who may judge and marginalize us.

Have you been “shamed and blamed” for developing COPD? How did you deal with it? Please share in the comments section.

 

CVS Quits: Retailer Bans Cigarettes

February 5th, 2014 | Author: Fabiana Talbot

CVS/pharmacy announced today that it will remove cigarettes and all tobacco products from its shelves in all 76,000 stores nationwide starting October 1, 2014.  Executives believe the distribution of tobacco products is inconsistent with their mission to promote health.  CVS will be the first national pharmacy chain to ban cigarette sales.

“When we asked ourselves where we expect to be in the future as a healthcare company, it became clear that removing tobacco products from our stores was the right thing to do,” CVS President and CEO Larry Merlo said in the recorded statement below.

 

The response on social media has been astounding, making #CVSquits a trending topic today.  Many individuals online celebrate the policy change, while others argue it will not impact the rate of smoking, boosting sales at other outlets.

According to statistics from the U.S. Centers for Disease Control and Prevention, an estimated 43.8 million people, or 19 percent of all adults, smoke cigarettes. Smoking remains the leading cause of COPD.  The COPD Foundation congratulates CVS for its commitment to health care and putting people before profits.

What do you think of the ban?  Do you think it will discourage smokers from lighting up, or prevent others from starting the habit?  Share with us below.

World COPD Day: November 20, 2013

November 18th, 2013 | Author: Fabiana Talbot

We are just two days away from World COPD DayThe COPD Foundation is supporting the Global Initiative for Chronic Obstructive Lung Disease (GOLD) to help raise global awareness on Nov. 20, 2013.  This is a prime opportunity for our community to come together in an effort to educate the masses about a disease that affects over 200 million individuals worldwide

Here are a few ways to get involved:

1. Tell your online networks about COPD Awareness Month by using #COPDAwareness on your social media pages:

  • Imagine breathing through a straw. That’s what it is like having COPD.  Learn how to protect yourself drive4copd.org. twitter#COPDAwareness
  • COPD kills more women than breast cancer and diabetes combined. Have trouble breathing? Go to drive4copd.org today. #COPDAwareness
  • World COPD Day is 11/20 – do you know about the third leading cause of death in the US? #COPDAwareness
  • Orange is the color of the movement to end COPD. RT if you or someone you know lives with this disease. @DRIVE4COPD #COPDAwareness
  • Repost if you or someone you know lives w/ COPD. Let’s find a cure for a disease that claims a life every 4 mins. #COPDAwareness 

Participate in the COPD Twitter chat on November 19 from 1-2 pm EST. We will be joined by representatives from the American Lung Association, the Centers for Disease Control, and NHLBI’s COPD Learn More Breathe Better campaign.  Use #COPD to join the conversation!

2. Go to DRIVE4COPD.org to join the COPD community and enter the NASCAR “Wave the Green Flag” Sweepstakes. You and a friend may win a trip to the DRIVE4COPD300 race at Daytona International Speedway!

cutout3.  Request a pad of Cure 4 COPD Pinwheel cutouts that can be sold at your office, school, cafeteria, etc. for $1-$5 and hang them with the donor’s name written on it. Pinwheel cutouts covering your wall will not only raise funds needed to work on the cure, but will remind everyone it is COPD Awareness Month.

E-mail FUNdraising@copdfoundation.org to make a request for a free pad of Cure 4 COPD Pinwheel cutouts.

        Visit the COPD ACTION CENTER.  All on one website you can:

  • Become a STATE ADVOCACY CAPTAIN (it’s really easy!)
  • Send pre-written ADVOCACY LETTERS to your representatives
  • Look up CONTACT INFORMATION for your local, state, and national representatives.
  • Sign up to RECEIVE ACTION ALERTS so you know when Congress is dealing with COPD legislation.
  • EMAIL YOUR FRIENDS about the Action Center.
  • FIND LOCAL NEWSPAPERS to write to about COPD.
  • Learn more about COPD LEGISLATION.
  • Learn how to EFFECTIVELY COMMUNICATE with members with tips on scheduling meetings, writing letters, or making phone calls

Go Orange for National COPD Awareness Month!

 

Pennies for Penny

October 29th, 2013 | Author: Katelyn Turner

Nicole says her mom Penny was a fighter—someone who never let COPD get in her way.

“I never saw her suffer, or just laying in her bed. The day before my mother passed, we were watching a Browns football game together. She was wearing a Browns t-shirt and hat, and it was 14-0 [Browns were losing], fourth quarter. All she kept saying was, ‘the Browns still have a chance to win,’” Nicole recalls. “She was in such good spirits right up until her last days.”

After her mom passed away, Nicole felt as though she had to do something to honor her.

Nicole and Penny

Nicole and Penny

“My desire has always been to give back, and do something for people who had COPD. I saw how the disease took over my mother and I wanted to do something to support those [living with COPD],” Nicole says.

That’s where “Pennies for Penny” was born—out of Nicole’s desire to help others. She reached out to friends, family, and co-workers to garner feedback, and created her first fundraising tools, a Bingo game that features sayings from Penny, and a Penny trivia game. Nicole used these at her first fundraiser September 28th. She’s planning on hosting a second fundraiser, a pancake breakfast, during November—COPD Awareness Month.

In addition to hosting fundraisers, Nicole, who lives in Cleveland, OH, says she also set up a FirstGiving Page with the COPD Foundation, encouraging friends, family, co-workers, etc. to donate what they can.

“I want to do something all year-round. Cleveland Clinic is a big hospital here, and I’ve been thinking I’d eventually like to work at the pulmonary department there. I am looking to work in public health, once I complete school,” Nicole says. She’s currently majoring in business management as a local community college.

She says her mom loved to spend time with family, including Nicole’s children Butchie and Eleah, and made others so happy—so it’s nice to see others step up in memory of her.

“That’s why I want to go into public health to help people like my mom—I want to follow my vision and make it happen,” Nicole says. “I think anything starts off with a  vision. If you have the passion to do it, your vision will come to you.”

“I had no idea what to do when my mom passed. First, it was like, ‘she’s no longer here.’ After that, I thought, ‘let me do something to honor my mom,’” she says. “I miss so many things about her, but my love and compassion keeps me going.”

Help Richard Johnson Bring Alpha-1 To the Winner’s Circle

October 16th, 2013 | Author: Fabiana Talbot

Richard Johnson, a longtime supporter of the Alpha-1 Foundation, is one of four finalists vying for the NASCAR Foundation’s Betty Jane France Humanitarian Award.  If he wins the $100,000 award, it will be donated to the Alpha-1 Foundation to fund vital research programs.  The winner is determined by who receives the most votes at nascar.com/award.  Please help Richard win by casting one vote every day until December 5!  Remember — a vote for Richard is a vote for Alpha-1 awareness.

Richard became devoted to the fight against Alpha-1 Antitrypsin Deficiency in 2008 when his two young children, Grace and Lucas, were diagnosed with the genetic condition, which can lead to life-threatening liver and lung disease.  There is no known cure.  Alpha-1 is a leading genetic cause of liver transplantation in children like Richard’s.

“The Alpha-1 Foundation congratulates Richard on his nomination as a finalist for the Betty Jane France Humanitarian Award,” says John Walsh, president & CEO of the Alpha-1 Foundation. “We are grateful for his leadership in fundraising and awareness efforts, and he richly deserves the honor. If Richard wins the award, the Foundation will receive a total of $100,000 that will be entirely spent on research for a cure for Alpha-1. And I cannot overstate the importance of the Alpha-1 awareness that will be generated if Richard is named the Humanitarian Award winner on national television; Alphas everywhere, both children and adults, will benefit. We urge everyone in the Alpha-1 community to vote for Richard every day till Dec. 5.”

 

Pulmonary Rehab Helped Him Turn His Life Around

August 12th, 2013 | Author: Katelyn Turner

At one time, Sylvester Catherman could barely walk 300 feet without having to sit down. Read more…

Exercises for People with COPD

July 30th, 2013 | Author: Sheela Cao

You may think that because you have COPD, you shouldn’t exert yourself. Read more…

Mind Over Matter

July 19th, 2013 | Author: Katelyn Turner

Kim Lynch says when she was diagnosed with COPD 10 years ago, Read more…