Reducing stigma through education

David Mannino, M.D., chief medical officer and co-founder of the COPD Foundation, said reducing stigma while also providing treatment is an important balance HCPs must find when treating patients. Like Ruess, people with COPD can feel a sense of stigma about their diagnoses because of the strong association with smoking. Mannino said he’s heard patients express that “they brought the disease on themselves” or that they “got what they deserved” because of their smoking habits.

“Similar to when a person is diagnosed with lung cancer, one of the first questions people may ask is about smoking,” Mannino said. “This is part of the whole ‘shame and blame’ beliefs that have permeated lung diseases like COPD over the years.”

Mannino said HCPs will always encourage patients to quit smoking to improve their quality of life and help reduce symptoms but should express that they recognize how difficult that task can be because of the addictive nature of tobacco. He also said providers should emphasize that smoking isn’t the only cause of COPD, and that exposure to any lung irritants, like chemicals or other environmental pollutants, can damage lungs.

Outcomes for people living with COPD can also depend on socioeconomic factors. People with lower incomes often fare worse, a correlation related to social determinants that can affect all aspects of health. Poor housing, exposures to pollutants, poor diet, barriers to healthcare and occupational exposures are among the factors that can put people at greater risk for COPD or deliver worse outcomes.

“Combatting stigma is an ongoing struggle,” Mannino said. He pointed out that, in addition to the fact that many people with COPD have never smoked, COPD can also develop and progress after people have stopped smoking. “We simply have to continually remind people about these things.”

Read: Freedom to Breathe: Disparities and COPD >>

Smoking must be stopped for at least six months before a lung transplant and is prohibited with oxygen therapy, but patients who are current smokers still receive standard COPD therapies. HCPs can also help reduce stigma by inviting patients to be involved in shared decision-making, encouraging participation in clinical studies and offering new treatments to those who might still be smoking as well.

Overcoming the stigma of COPD

Patients can also play a role in fighting stigma. Support groups for people with COPD and therapy can help patients improve their mental health and feel stronger when asking for help and better care from HCPs.

For Ruess, battling the stigma has been a journey of close to two decades. Now 57, Ruess has found her voice through advocacy, joining the COPD Foundation’s state captain program. As state captain for California, she’s participated in health fairs to promote COPD awareness, worked to educate patients about COPD and been involved in research opportunities to help improve treatments. Ruess also hopes to collaborate with elected officials to improve COPD policy and appreciates the opportunity to help other people receive the best care possible — no matter the reason for their diagnosis.

Do we know why the diagnosis of lung cancer in young people is on the rise, particularly among nonsmokers?

We don’t know why. Part of it has to do with improvements in imaging, things like X-rays and CT scans. We’re now able to see lung nodules — small areas of dense tissue — that are smaller than the size of a pea. I think we’re just detecting more cancers because of the pictures we take.

As far as lung cancer in nonsmokers goes, I think this has been one of the most challenging things in medicine. We obviously think of lung cancer as a smoking-associated disease (we don’t really use the word “cause”), but now we are finding more and more cases of lung cancer linked to mutations.

Mutations are genetic changes that happen in your DNA — they’re changes that happen within the body, not things that are inherited. Lots of research points to mutations as the reason we’re seeing more lung cancer in nonsmokers, but why some people may get these mutations is still unknown.

Read: Why Are More Non-Smokers Getting Lung Cancer? >>

Do you see certain mutations more commonly in younger-onset lung cancer?

We do, yes. Epidermal growth factor receptor mutation, or EGFR, is the most common known mutation in nonsmokers. The other two we see most often — although they are still relatively rare if you look at all lung cancers — are ALK and ROS1. Those are the three main mutations we see more in nonsmokers and also in younger patients.

We also are really filling out the pie, meaning if you looked at a pie chart of all lung cancers, we only used to know about those three mutations, which are small slices since they’re still relatively rare. Now we’re finding more and more mutations linked to lung cancer, so the pie keeps getting more slices. But EGFR, ALK and ROS1 are still the three most common ones.

What type of treatments are most often used in cancers with mutations?

If one of these mutations is found, a lot of the treatments are pills, which is actually pretty rare for lung cancer. Lung cancer almost always requires chemotherapy. We’ve done that for many, many years. But for some of these mutations, we now can skip chemotherapy because we have scientific evidence that the pill actually does better than the chemo. This was a huge revelation in our field, and it’s been the standard for about 15 years now.

These pills are a type of targeted treatment. This means they are made to selectively attack the cancer cell with the specific thing that is wrong and, hopefully, block it from growing. Many of these treatments are called tyrosine kinase inhibitors. Tyrosine kinase is one of the enzymes that allows cancer to grow, and these pills block it.

Not all patients with mutations will only get pills, though. For many patients who have the EGFR mutation and stage 4 or metastatic disease, which is when the cancer has already spread and is considered incurable, we are actually finding that adding chemotherapy to the pill might be beneficial.

Read: Lung Cancer Treatment: Next Steps After Diagnosis >>

Are there additional considerations for treatment side effects and outcomes for younger adults with lung cancer?

I think fertility is something we’re thinking a lot more about. We haven’t always had the most robust system set up in most cancer centers because, understandably, we are used to seeing older people. But I think there’s actually quite a bit of national awareness about the need for fertility discussion.

With targeted treatment pills, there’s pretty limited data on how the treatment affects fertility. But in general, someone’s not supposed to be pregnant if they’re taking these pills, so we do talk about that up front.

Many of these targeted treatments do cause a fair bit of rash and skin issues, and that affects body image and can also be painful. We have a really good team at Stanford who we call supportive dermatologists whose entire job is actually to help us manage side effects of these pills. We come up with lots of creams and treatments to make sure the rash is controlled and not impacting people’s day-to-day.

Usually hair loss is pretty minimal, even with the chemotherapies we use with lung cancer. I always tell my patients that my goal is for whatever happens in the clinic room to stay there, so if they go to the grocery store afterward no one can tell they’ve just gotten cancer treatment.

Are there differences in symptoms and survival between younger- and older-onset lung cancer?

In general, lung cancer survival is still very poor, and it’s definitely behind many other cancers as far as how long we’re having people live. I think for younger people, it’s honestly just much harder, because our lungs are very resilient. What I mean by that is, our lungs can hide things really well, especially if someone’s young, is not a smoker and doesn’t have another lung disease.

Someone can unfortunately have a fairly large mass in their lung and not have any symptoms. One of the scariest things is that we tend to find more stage 4 disease in young people. This is not data, necessarily. Just my experience.

For patients with mutations, the survival rate is generally better. For example, we now have data where people with the ALK mutation are living with incurable lung cancer upwards of more than five years. I know that doesn’t sound like a lot, but it’s pretty much unheard of in lung cancer that has spread — so we’ve made a lot of progress.