New survey reveals key barriers to care for COPD patients in US
COPD Action Alliance: Results 'should be a wake-up call for policymakers'
A new survey from the COPD Action Alliance shows that people living with chronic obstructive pulmonary disease (COPD) in the U.S. often have difficulty getting proper care because of barriers to health insurance, high costs, and limited access to treatment.
According to the alliance, a nationwide advocacy network, the results from the survey — called “Living with COPD: Patient Experiences & Health Policy Perspectives” — reveal both a “hidden COPD epidemic and urgent gaps in care” for people with the chronic inflammatory lung disease.
“This survey should be a wake‑up call for policymakers,” Sarah Hoffman, coalition director for the COPD Action Alliance, said in an alliance press release. “Patients want action — better coverage, better access and better awareness. We owe it to the 30 million Americans with COPD to listen and act.”
Launched last year by the Alliance for Patient Access network, the COPD Action Alliance is an advocacy coalition that brings together leaders at the state and federal levels. Its goal is to push for policies that put patients first and improve care for people living with COPD, a progressive disease that damages the lungs and airways, making it difficult to breathe.
“Too many Americans are living with COPD in the dark — undiagnosed, unsupported and underserved,” Hoffman said. The release cited an “urgent need for improved screening, expanded treatment access and comprehensive policy change.”
Altogether, 250 people completed the survey. Most were white individuals (72%) and had not served in the country’s military (82%). Slightly more than half were women, and 60% were ages 55 or older.
A total of 58% of the respondents had been diagnosed with COPD. The remaining 42% suspected they may have the disease, but had not yet received such a diagnosis. Per the alliance, that large proportion suggests that many people could be living with undiagnosed COPD and missing opportunities for early care.
“The high percentage of respondents who suspect they have COPD but remain undiagnosed underscores the critical need for improved education, awareness and screening efforts,” the COPD Action Alliance wrote in its survey report.
Hard-to-get insurance, high costs, limited access cited as barriers to care
Most respondents said they had talked with their doctors about COPD — almost half with a primary care provider and 33% with a lung specialist. Still, support and advocacy activities remain limited, as more than one-third (35%) said none of these applied to them, showing a need to better connect patients with resources, per the report.
Environmental factors and workplace exposures are known to play a major role in causing COPD. Most respondents reported exposure to cigarettes or secondhand smoke (85%), air pollution (69%), and wildfire smoke (21%). In addition, 74% had smoked cigarettes at some point, and 30% had used e-cigarettes or vaping products.
Nearly half of the participants said current U.S. policies are not improving COPD care. Key priorities for better care include strengthening health coverage (65%), ensuring access to treatment (55%), increasing research funding (55%), and expanding access to pulmonary rehabilitation (50%). Respondents also called for more efforts in improving air quality (49%), and nearly 4 in 10 sought the launch of national awareness campaigns.
One U.S. veteran living with COPD was quoted in the report as saying: “Health care policies should prioritize affordable access to inhalers, supplemental oxygen and pulmonary rehabilitation programs and ensure more comprehensive coverage for medications and treatments.” A total of 18% of survey respondents were U.S. military veterans.
Nearly 1 in 3 respondents reported facing barriers to accessing treatment or medical supplies because of health insurance policies. The most common barriers included coverage limits and prior authorization requirements — a policy requiring approval from the insurance plan before a treatment is provided to a patient. High out-of-pocket costs and difficulty scheduling specialist visits were also commonly cited as barriers to care.
“I faced several barriers with insurance and health care policies while trying to access COPD treatment,” said one patient, who recalled dealing with prior authorization issues, out-of-pocket costs, and the step protocol — a policy requiring patients to try less expensive medications before the original prescription is covered.
6 in 10 patients failed to ID COPD as leading cause of death in US
Most respondents (79%) also agreed or strongly agreed with a statement that navigating the healthcare system is “challenging,” per the report. Fewer than two-thirds of patients (64%) relied on their healthcare providers for information, and 81% said that a lack of COPD awareness or education is a major challenge for patients.
“These responses paint a clear picture,” Hoffman said. “Patients are telling us where the system is failing — and where we must improve. Now it’s time for lawmakers and health leaders to step up.”
Importantly, the report noted that, while COPD is a leading cause of death in the U.S., “only 40% of the respondents correctly identified” it as such.
These responses paint a clear picture. … Patients are telling us where the system is failing — and where we must improve. Now it’s time for lawmakers and health leaders to step up.
“The results of this survey highlight both the challenges and opportunities in COPD care and policy,” the report stated on its conclusion page. “While patients generally trust their health care providers and take their condition seriously, significant barriers remain in accessing care and navigating the health care system.”
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