“It’s a shame” We don’t do more to treat COPD

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More than 20 years after her diagnosis of COPD, Grace Anne Dorney Koppel and her husband, broadcast journalist Ted Koppel (pictured above), are still fighting to raise awareness and fundraise to treat the disease for others through the through the Dorney-Koppel Foundation. Noam Galai / Getty Images for HISTORY
  • Ted Koppel and his wife, Grace Anne Dorney Koppel, founded the Dorney-Koppel Foundation to raise awareness about COPD, a chronic lung disease.
  • Grace Anne Dorney Koppel has lived with COPD for 20 years. She has made it the passion of her life to help others living with the same condition.
  • While COPD is often associated with smoking, more than 25 percent of people with COPD have never smoked.
  • People with COPD are at increased risk for serious complications from COVID-19.

Ted Koppel is best known for his accolades as a broadcast journalist, especially for his 25 years as an anchor for “Nightline” on ABC.

Equally notable, however, is one of his personal passions.

Koppel and his wife of 58 years, Grace Anne Dorney Koppel, have made it their mission to raise awareness about chronic obstructive pulmonary disease (COPD).

COPD is a group of lung diseases, including emphysema and chronic bronchitis, that block the flow of air and make it difficult to breathe.

In 2001, after having difficulty lying, sleeping and walking, Dorney Koppel was diagnosed with COPD.

“I couldn’t walk through a 20-foot room without stopping to catch my breath. It seemed immediate, but COPD is not. It is a disease that takes decades and slowly progresses in your lungs. Unless you get diagnosed early on, you almost collapse, ”Dorney Koppel told Healthline.

While smoking was the cause of her COPD, Dorney Koppel’s diagnosis came a decade after she quit.

“I didn’t realize the risks I was taking when I started smoking, and when I quit smoking 30 years ago, 10 years before my diagnosis, it was too late,” he said. she declared.

While smoking is a cause of COPD, the Centers for Disease Control and Prevention (CDC) reports that approximately 25 percent of adults with the disease have never smoked.

In these cases, exposure to dust, gas, chemicals and more in the workplace can be the cause.

Dr MeiLan Han, a professor of medicine at the University of Michigan, said many people mistakenly believe that smoking is the only cause of COPD.

“Another misconception is that these patients are elderly and male. We know that the effects of tobacco smoke can actually be seen on the lungs in middle age, and about half [of] people with COPD in the United States are women, ”Han told Healthline.

Lack of understanding of COPD may also contribute to the estimate 12 to 15 million Americans who live with the disease and don’t know it, according to the US COPD Coalition.

“We do not implement any type of routine screening for lung disease, which contributes to the underdiagnosis,” Han said. “Additionally, some patients may be asymptomatic initially, then even as the disease progresses, patients may attribute the symptoms to something else and not raise the issue with their health care provider.”

When Dorney Koppel was diagnosed with COPD, she had only 27% lung function.

Her doctor gave her 3-5 years to live.

“He said, ‘Well, I suggest you make end-of-life preparations,’” ​​she recalls.

However, Dorney Koppel credits pulmonary rehabilitation, an exercise program combined with education about COPD, for outlining her prognosis.

“I went through pulmonary rehabilitation and graduated from it and to this day, 20 years later, I put into practice what I learned, and of course in those intervening years, I have studied this disease and learned a lot about it, ”said Dorney Koppel. .

Grateful that his wife had access to such treatment, Koppel said he wanted to reimburse it, especially since many people with COPD in the United States cannot afford treatment.

“Grace Anne talks about the impact of pulmonary rehabilitation, and the impact is huge and has made a huge difference in her life and in the lives of many people. But pulmonary rehabilitation is only available to a tiny fraction of people with COPD, and that’s a national disgrace, ”Koppel told Healthline.

To change that, the couple founded the Dorney-Koppel Foundation. For the past 11 years, they have established pulmonary rehabilitation clinics in West Virginia, Maryland, and New Orleans.

“Almost all of our clinics except one are in rural America because that’s where the prevalence of COPD is highest, and it’s also where there are the fewest facilities for people to. learn to take control of their lives, ”said Dorney Koppel.

Through the foundation, they also hope to raise funds for COPD, as it is the third cause of death by disease in the country, according to the American Lung Association.

“Think about it. It is the third chronic disease in the country just after heart disease and cancer… Where does it stand in terms of funding for Congress? I think it’s 165th. It’s just a shame, ”Koppel said.

To raise awareness and in honor of National COPD Awareness Month, the foundation is hosting a free virtual concert featuring Lyle Lovett, Rodney Crowell and Steve Earle.

The concert can be viewed until November 25 by visiting Lyle Lovett’s Facebook page, YouTube page, Where LyleLovett.com.

COPD is diagnosed based on a medical history and a breath test called a spirometry.

“When patients do the breath test, we see a characteristic pattern of inability to release air quickly. Small diseases of the airways and holes in the lung tissue (emphysema) lead to air entrapment, ”Han said.

To self-assess whether your breathing needs to be examined by a doctor, the Dorney-Koppel Foundation, with the COPD Foundation, the American Respiratory Care Foundation and FCB Health NY, offer a COPD self-assessment at SOS COPD.

“COPD is a common and highly morbid disorder that is both underdiagnosed and underfunded… People with respiratory symptoms and health care providers need to be alerted to the importance of early diagnosis and ‘rapid initiation of treatment’ Dr Enid Neptune, associate professor at Johns Hopkins University, told Healthline.

Although there is currently no cure for COPD, drugs and inhaled steroids in addition to pulmonary rehabilitation can help reduce inflammation in the lungs and improve quality of life.

However, Neptune hopes more diagnostic measures and effective treatments are on the rise.

“[The] the development of research tools that allow us to identify molecular signatures of COPD that can be used for precision diagnosis and effective therapeutic targeting is a big step forward, ”she said.

As the medical community continues to do its part, Dorney Koppel continues to do hers.

“I am a patient advocate. I speak for this disease because I know that with treatment – the right treatment – people can really restore their lives, ”she said. “It’s time to throw shame out the door and treat the disease and the person. “

Her husband supports her efforts and is happy to use his popularity as an acclaimed journalist to open doors.

However, Koppel said his wife is a force of nature leading the way.

“[She] On its own, this is obviously a very biased opinion, which has paid more attention to patient rights and what patients should do, and what patients can do, than anyone else in the world. the country. She did a great job, ”Koppel said.

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