What We Learn From Listening
INSIGHTS FROM THE CHEST FOUNDATION LISTENING TOUR
A year after the start of the COVID-19 pandemic and more than 550,000 US deaths later, the picture of lung health is forever changed with with COVID survivors at an increased potential for long-term effects from the virus.
What didn’t change was the impact long-standing systemic health and social inequities are having on our disadvantaged populations. Black, Indigenous, Latinx, and other people of color are losing their lives at a higher rate than their White counterparts. Nationwide, Black people died at 1.4 times the rate of White people, accounting for 15% of all known COVID deaths.
The numbers are grim. The people behind these numbers are families, friends, and neighbors who make up the heartbeat of a community. So many of them are our community – the people with chronic lung disease who we fight for every day.
Learning about the circumstances that exist for those with lung disease who live in different regions is critical to understanding how some of our communities are fighting for their health from a disadvantaged position. We visited five communities across the United States as part of a year-long virtual Listening Tour. The communities were Jackson, Mississippi; Chicago; New York City; South Texas; and the Southwest (California, Arizona, and New Mexico).
This is the state of health care in these regions—all share commonalities, including limited access to care due to proximity or adequate health insurance coverage and environmental health factors. This results in a decreased quality of life and increased loss of life for our patients, especially those living in lower income communities.
These are conditions we can’t change, but there are actions we can take to support people living with lung disease.
New York City’s poorest neighborhoods have mortality rates that are 30% higher than those in wealthier neighborhoods for virtually every health indicator.
Mississippi has the LOWEST NUMBER OF PHYSICIANS per capita of any state, with nearly half of Mississippi’s rural hospitals in risk of closure and having the THIRD HIGHEST MORTALITY RATE nationwide for lung disease.
Between 10% and 28% of people in Chicago’s low-income neighborhoods have unmet prescription needs, and 12% of ADULTS in Cook County are living with chronic lung disease.
Texas has the highest percentage of uninsured people in the country, with communities like Corpus Christi and San Antonio more than double the national average and more than 1.6 MILLION RESIDENTS with ASTHMA.
Air quality in Phoenix received an “F” for both particle pollution and ozone quality, the lowest quality grade a city can receive, and nearly 30% of patients with lung cancer diagnoses in Arizona receive no treatment, the worst such rate in the country.
IN THEIR OWN VOICES
When conditions that don’t support health care exist, people are forced to make decisions that can cost them their lives. Real people. Patients and caregivers joined the conversation sharing with clinicians and community leaders alike what real life is like for them.
“When you need the doctor most, that’s when you’re turned away,” said Challise Burciago of Jackson, who is a patient and caregiver. Challise kept her symptoms well managed until she caught COVID-19. She couldn’t get an inhaler because she couldn’t see a doctor due to her COVID diagnosis.
When Elizabeth Ortiz showed up for her appointment to address her asthma, she was nearly turned away. The doctor’s office didn’t have documentation of the appointment scheduled from a NYC hospital emergency department referral. “I was extremely upset. I couldn’t breathe. I didn’t feel well, and the nurses told me I’m not going to be seen,” she said.
“I was extremely upset. I couldn’t breathe. I didn’t feel well, and the nurses told me I’m not going to be seen.”
Rita Castro is legally blind with limited mobility. Getting to an office visit at any one of her 17 different doctors can be a lengthy test of her will. She didn’t notice when her asthma had worsened, and her breathing became impaired.
“I know it’s inevitable that eventually, at some point, there will be no coming back from this (loss of vision). And so, I feel my world is getting smaller and darker.”
“Every day, there are just a number of things that I need help with, and there is no one here to help me. And so, I will sit and wait,” said Rita, who lives in South Texas. “I know it’s inevitable that eventually, at some point, there will be no coming back from this (loss of vision). And so, I feel my world is getting smaller and darker.”
Marciano Gutierrez and his wife, who is his primary caregiver, speak primarily Spanish. They struggle to find a doctor who understands their language, their culture, and their everyday experience. A decade ago, Marciano worked in a frozen food warehouse where cold air blasted into his lungs for hours a day, exacerbating his asthma and COPD.
When he had a heart attack and lost his job, his wife’s insurance provided coverage until she lost her job during the COVID-19 pandemic. Paying for the asthma medications went from difficult to impossible. “We have been getting by with samples for the inhaler,” he said through a translator.
Less than 3 weeks after participating in the Listening Tour, Marciano Gutiérrez, age 68, died in a Chicago hospital after testing positive for COVID-19.
Access. Insurance. Poverty. Disability. These are all factors that play into the availability of quality health care for millions of US residents every year. When our people are marginalized and then encounter failing health systems, health conditions go unrecognized, undiagnosed, and untreated. Through efforts like the Listening Tour, we can elevate people’s voices. But actions that change lives can’t happen without personal commitment and financial support.
How can we act to make a difference in the quality of lives for those affected by these conditions? One way is by acting to remove barriers.
Access. Insurance. Poverty. Disability. These are all factors that play into the availability of quality health care for millions of US residents every year.
FINDING THEIR OWN WAY
Overcoming this divide has been on the shoulders of the patients who are too often ill-equipped to advocate for their needs. They are expected to take on government systems that make getting assistance nearly impossible. Language barriers keep vital lifesaving details from being heard and understood by both clinicians and patients. Lack of transportation can prevent the most determined of patients from getting to inaccessible or far away medical centers. Then there are the ever-rising medical costs.
Maria del Carmen Agudelo was born in Colombia and lives in NYC. She doesn’t speak English. At most of her appointments, she relied on translators. Details got lost in translation and made her hesitant to ask questions. Then, she found a Spanish-speaking pulmonologist. “He has explained my condition to me. I have had translators and doctors who have treated me, but communication was not good when it is not in your same language. It is a great barrier to understanding and asking questions confidently,” she said.
In a community where 82% of the population is Black, only 26 pulmonologists were listed as practicing in Jackson, giving each doctor roughly 1,600 patients with a chronic lung disease to treat.
Asthma is the leading cause of ED visits, hospitalizations, and missed school days in New York City. It is more common among low-income Black and Hispanic children than any other group.
Chronic lower respiratory diseases were 26% higher for Blacks in Chicago than Whites. Of those who died, they were more likely to be older, poor Black men.
Low-income people in Texas, who are primarily Black or Hispanic, are more than twice as likely to suffer from COPD. Asthma rates were twice as high for Black children in Texas compared with White and Hispanic children.
Pulmonary disease deaths grew by 54% for Black people in the 10-year period from 2007 to 2017 in Arizona. The same study found the pulmonary death rate for Native Americans increased 76%.
Busy mom Constance Baker is the primary caretaker of her father, James, who can’t read or write. When his breathing became labored, repeated trips to the ED weren’t solving the problem. Originally thought to be a cardiovascular problem, Constance and James were referred to Jackson pulmonologist Dr. Demondes Haynes when the condition wasn’t improving. James, who has pulmonary hypertension, was diagnosed with scleroderma, a rare disease that hardens patches of skin and created scarring of his lung tissue.
A specialized nursing team trained Constance in preparing her father’s medication. Throughout the process, Dr. Haynes patiently explained complex medical concerns and answered questions.
“Patients don’t care how much you know about the disease until they know how much you care,” said Dr. Haynes.
Nobody likes a visit to the intensive care unit. Shirley Van Buren has severe asthma episodes that regularly sent her to a Chicago hospital where she was steered directly to the ICU. When she had to take medical leave from her job, she lost her insurance coverage, which led to some tough choices – stop providing for the grandchildren she helps raise, pay for asthma or diabetes medications, or cover her heart medication.
“I really had to hustle to figure out how to get the money in the door,” said Shirley, who started a side business selling baked goods. She was able to get health coverage through an assistance program but finding a doctor who accepted her public health care and treated her with compassion wasn’t easy. It eventually happened. “Ever since I became her [Dr. Sunita Kumar} patient, she was right there. No matter what. She reminds me of my mother, always on me,” she said. “Trust for me was really critical in my willingness to follow (doctors’) instructions.”
Orlando and Margie Rivera Orlando Rivera found a medication that got his asthma under control, but the allergist who prescribed it to him increased the cost of office visits as often as four times a year. When the office administrator failed to file the right paperwork for a grant that had covered his copayments, Orlando had to find a different doctor. His trust in the system was low.
“Trust, I think for me, has to be built on the consistency of a caring clinician who takes the time to listen and respond accordingly.”
Rivera was pleased to find Dr. Diego Maselli, who was able to accurately diagnose his condition and prescribe medication that substantially lessened his symptoms at a price he could afford. “Trust, I think for me, has to be built on the consistency of a caring clinician who takes the time to listen and respond accordingly,” Orlando said, who found that in Dr. Maselli.
Patients and caregivers struggling to afford medications or be understood by their clinicians need advocates to stand with them in the struggle. With the support of our donors, we are those advocates.
WHERE CHANGE CAN BEGIN
Every patient needs to be their own advocate, but for some, the social and racial systems in place create such thick barriers that being heard is nearly impossible. Overcoming the systems and culture that support these inequities can only happen when all the parties involved are willing to look at their role in the problem. Some of the barriers include:
- Attentiveness and care can be inconsistent, and providers can appear to lack empathy.
- Not understanding the circumstances that make medications unaffordable keeps patients from returning for care.
- Billing and costs are seen as point of contention between staff and patients; patients can feel shamed and believe doctors are only focused on money.
- Overwhelmed with busy schedules, doctors feel limited in the time they have to form connections with their patients.
- Language barriers and racial and ethnic difference can hinder understanding and make a patient hesitate to share crucial information.
This is just the tip of the problem underlying the health disparities crisis in America. In the next months, we will reveal our plan to begin addressing and funding programs that target the core of these issues. Keep listening and watching.
HELP US TURN LISTENING INTO ACTION
The Foundation’s Listening Tour provided patients a platform from which to speak to civic leaders, clinicians, and specialists responsible for changing and improving the conditions and quality of life for them and their communities.
People who, with the onset of COVID-19, are more vulnerable than ever with their lung conditions need our help. Because of your support, people who are compromised by lung disease have a voice.
Help us continue to turn words into action.
To delve deeper into each of the five conversations that took place in the Listening Tour, visit chestfoundation.org/tour.
Sources: All sources can be referenced on the CHEST Foundation website under the Listening Tour.
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