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MediKidz: Educating Children about COPD

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Receiving a diagnosis of a chronic disease can be a scary and confusing time; and the impact on family members and children is often overlooked. While the prevalence of COPD is seen in an older generation, educating of loved ones is key factor to promote understanding and support. This is why the COPD Foundation is proud to have partnered with Novartis and Medikidz to develop a comic book that provides a creative and innovative way to help those with COPD explain their condition to friends and family, specifically children and adolescents.

MediKidz Comic for COPD Medikidz is a children’s medical education organization that works closely with healthcare professionals, families, children, and patients to produce unique learning materials in an interactive, powerfully-visual comic book format, thereby helping to educate children about their health as well as the health of those around them. The comic follows the story of Andrew and Hannah, who are guided by the Medikidz ‘superhero’ team to help them understand COPD and ways in which they can help their Grandma.

“When organizations educate the public about COPD, oftentimes we overlook the impact the disease has on entire families and communities. COPD not only affects those who are diagnosed, but their family members and loves ones as well, including children,” explains Fabiana Talbot, director of communications at the COPD Foundation.

“The MediKidz comic can therefore have two tiers of effectiveness; not only as a preventative measure, by showing children the repercussions of smoking, but also from an awareness standpoint. We hope this graphic novel will inspire younger generations to become future advocates by working to remove the stigma surrounding COPD.”

 You can find the MediKidz comic online, here.

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Tags: comic Education MediKidz
Categories: Current Issue Volume 12 - Number 3

Harmonicas 4 Health: Duff Maynard's Story

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The COPD Foundation’s Pulmonary Education Program (PEP) is proud to offer Harmonicas 4 Health (H4H), the first nationwide harmonica program created especially for individuals with COPD and other chronic lung diseases. This program was developed and launched due to the generous support of ACM Lifting Lives, the charitable arm of the Academy of Country Music.

Duff Maynard, 66 years old, can attest to the benefits of H4H. Originally from New York, Duff moved to Tennessee, a state with the highest rates of COPD in the country, 11 years ago. He is a former smoker and also lives with asbestosis. Duff first learned he had COPD about 10 years ago and has been using a variety of medications ever since. He has been through pulmonary rehab for a year and a half ago and is an active member of the Better Breathers Club in Murfreesboro, TN.

Harmonicas for Health Duff’s life after his diagnosis didn’t change much initially, until 3 years ago when he experienced his first exacerbation. Then everything changed.

“I couldn’t golf of anymore,” he explained, “... could barely walk in the stores. Most of my regular activities (mowing the lawn, working in the yard, painting, working on my car) ceased. I just didn’t have the breath to do them.”

Then in early 2016, during one of the Better Breathing Club meetings, H4H was presented by Stephanie Williams of the COPD Foundation who asked for volunteers for the pilot program. Duff immediately joined as did many in his club. “I’ve never played the harmonica before. I always wanted to play a musical instrument and this was a chance to do it. My wife joined also which is great because we get to practice together and support one another,” he said.

Duff has seen the positive impact of the H4H program ever since. He knows the story will continue, but shared several impressive milestones that he has reached since joining H4H.

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Tags: COPD Harmonicas for Health lung health
Categories: Current Issue Volume 12 - Number 3

The Patient Access to Durable Medical Equipment Act (PADME) and You

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Since its passage in 2008, the COPD Foundation has been committed to monitoring the implementation of Competitive Bidding throughout the country. We believe it is a failed piece of legislation that harms patients. Since its rollout, oxygen access has become less certain for many patients. The COPD Foundation’s policy team has been working diligently with the Centers for Medicare and Medicaid (CMS), along with DME partners and concerned community members to limit the effects of this detrimental policy.

The PADME Act and You The Competitive Bidding program means companies that provide your oxygen equipment will have to submit bids to Medicare reflecting the lowest price they can provide for the supplies. Medicare will then choose approved companies (called contract suppliers) and set the price based on the bids that were submitted. The supplies impacted by Competitive Bidding, called durable medical equipment (DME), include oxygen concentrators, walkers, wheel chairs, prosthetic limbs, hospital beds, and mail order diabetes products, among many others. The intention of the bill was to increase competition among DME suppliers and save the government and taxpayers money. However since implementation, there has been an alarming reduction in liquid oxygen access, a more portable and lighter option preferred by many patients which enables them to continue their every day activities. Additionally, we have seen nationwide cuts to service and delivery options.

Our most recent efforts are around lobbying for the passage of S.2736 and H.R. 5210, the Patient Access to Durable Medical Equipment Act (PADME). The PADME Act’s main purpose is to delay the next phase of reimbursement cuts for rural areas by 15 months (October 1, 2017). In addition, it addressed a number of technical issues related to competitive bidding and required a monthly report by CMS to monitor the impact of the cuts on Medicare beneficiary access-access that is critical to millions of COPD patients across the nation.

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Tags: COPD durable medical equipment PADME patient access
Categories: Current Issue Volume 12 - Number 3

Clinical Guidelines to Help Diagnose and Treat "Genetic COPD"

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The Journal of the COPD Foundation has published new clinical guidelines designed to assist healthcare providers in properly diagnosing and treating Alpha-1 Antitrypsin Deficiency (Alpha-1) in adults.

Alpha-1 is the most common known genetic risk factor for emphysema, and is often referred to as “genetic COPD.” Experts estimate that less than 10% of people with Alpha-1 have been properly diagnosed. The guidelines recommend that everyone with COPD should be tested for Alpha-1, regardless of age or ethnicity; that anyone with unexplained chronic liver disease should be tested for Alpha-1; and that parents, siblings and children as well as extended family members of Alphas or others with an abnormal alpha-1 gene should receive genetic counseling and be offered testing for Alpha-1.

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Tags: alpha-1
Categories: Current Issue Volume 12 - Number 3

Attending Conferences: A Patient's Perspective

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Jean Rommes, COPD State Captain and Advocate

As a member of the ATS Public Advisory Roundtable (ATS PAR), I was invited to attend the ATS annual conference in San Francisco. I represented EFFORTS (Emphysema Foundation For Our Right To Survive), an on-line advocacy and support group for people with COPD on PAR. EFFORTS has been sending people to the ATS conference for many years, so I have been attending for nearly 10 years- this year with some additional responsibilities.

As an ATS PAR member, I had responsibilities to attend and help with the PAR events, especially the Patient Day which is always held, the day the conference officially opens. The day began with the PAR business meeting and continued as PAR members welcomed patients, made sure they got to the right rooms and knew where the oxygen refill stations were located. The day included lunch for everyone and time to sit at tables with experts in the field. It was a long day and required a lot of moving from place to place, something that is made more difficult when you’re juggling your O2 tank, your laptop and your conference materials.

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Tags: advocacy mobility
Categories: Current Issue Volume 12 - Number 3

Elwood the Dog: An Unlikely Caregiver

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Bill Clark, Senior Director of Community Outreach

Today, I write a different kind of memorial tribute. It is not for someone who had COPD, but instead for a pioneering caregiver. What makes this different is that this particular caregiver only weighed around 30 pounds and traveled our world on four legs. You might have guessed, Elwood was a dog, but just not any dog. Elwood, like his master, was a true inspiration in the early days of COPD awareness; who brought COPD awareness and his amazing master national attention while bringing hope, joy and love to patients all across the country.

This morning I received the following message: “With heavy hearts we said goodbye to our faithful friend, Elwood Borger last night. He has helped our family forage through some of the hardest times in our lives. Farewell to a dog who had no equal.”

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Tags: caregiving
Categories: Current Issue Volume 12 - Number 3

Working Simpler to Save Energy

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For those with COPD, living with lung impairment can make even simple tasks seem overwhelming. While some more elaborate tasks may seem out of reach, we can still be productive and save precious energy by simplifying how we do things.

For example, if your task is as simple as bathing, you can simplify by purchasing a large handled bath brush so you don’t have to reach, using a terry cloth robe to dry yourself, or maybe even have a shower or bath chair so you can sit while bathing. When cooking, it doesn’t take any extra time to make larger portions so you can freeze leftovers for times when you don’t feel optimal.

Whether the task is big or small, the steps are the same:

  • Assess the task. Figure out what you want to accomplish. Decide if all or part of the task is physically possible or if you will need assistance, and if the assistance is available.
  • Plan it all out: Make a list of each step involved, what materials you will require, what you feel you can still do yourself and each step that might require assistance from others. Establish how each step will be accomplished. It is important to be realistic as to what you are capable of doing at a given time.
  • Schedule when you want to begin and end. Remember, it is not always advisable to tie yourself to a strict time table, and that you may need to adjust the schedule based on how your capabilities at a particular time or the schedules of those who might need to assist you. If possible try to put simpler steps first and then gradually build as your stamina increases.
  • Assemble beforehand all materials and tools you plan to use to have at hand. Let’s look at some real life examples how people were able to achieve both little and big accomplishments despite their lung impairment.

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Tags: Living with COPD
Categories: Current Issue Volume 12 - Number 3

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