Obstructive sleep apnea (OSA) is a complex condition with a variety of contributing anatomical, physiological, inflammatory, and obesity-related risk factors, which can lead to many physiological changes in the body.1 Yet for patients with OSA, there is good reason to be hopeful right now.
We are witnessing tremendous advances in OSA diagnostics and therapeutics that should provide more options for patients. The U.S. Food and Drug Administration (FDA) approved the first medication for treating OSA in obese adults in December: tirzepatide (Zepbound®, Lilly).2 The global device market is also evolving and expanding, with projections estimating it will reach $10 billion by the end of this decade.3
This demand for innovation is driven by patients who are looking for cost-effective treatment options and want to adhere to these therapies to improve their overall quality of life. Despite the tremendous benefits these new innovations in the diagnosis and treatment of OSA will offer patients, they will also face several challenges.
The first major hurdle is the lack of global awareness about OSA and its serious health implications, which may prevent individuals experiencing classic OSA symptoms from seeking diagnosis or treatment in the first place. Stigma associated with OSA can further discourage people from pursuing diagnosis or treatment. Even for those who do seek diagnosis, novel testing and treatment can be expensive, limiting accessibility. Lack of immediate coverage by insurance companies can further delay diagnosis and treatment, leading to additional disparities in care. Clinically, some innovations may perform well in trials, but show reduced effectiveness and present side effects in real-world settings. Lastly, patient hesitation and lack of trust in novel therapies—often due to concerns about safety—can create further barriers to adoption.
Patient advocacy groups have an important role to play as a trusted partner in overcoming these challenges by bridging the two communities—industry and patients.
The Critical Role of Patient Advocacy
Patient advocacy can be defined as the act of working to improve health outcomes in individuals and communities by helping patients get the care and resources they need. Patient advocates also work to change policies and practices that improve health outcomes in patients. Therefore, advocacy can be defined as a deliberate process of informing and influencing decision-makers in support of evidence-based policy change.
So why is it important to advocate for OSA patients? Because the OSA burden on society is significant.
An estimated 54 million people in the U.S. and nearly one billion worldwide have OSA.4 Yet, according to the American Academy of Sleep Medicine’s OSA indicator report, only 20 percent of suspected cases in the U.S. have been diagnosed.5 This diagnostic gap comes at an alarming cost— $149.6 billion (as of 2016) annually due to lost productivity, workplace and motor vehicle accidents, and medical expenses. Untreated OSA is also linked to significantly higher healthcare costs, with some estimates suggesting a two-fold increase in medical expenses due to cardiovascular comorbidities. For instance, 80 percent of people with type 2 diabetes have OSA, and OSA is thought to increase the risk of heart disease by 30 percent and stroke risk by 60 percent.5
Many of these people continue to suffer because they are undiagnosed or misdiagnosed. For many years, patients had few treatment options beyond positive airway pressure (PAP) therapy, but that has changed with the emergence of several new promising therapies and interventions.6 However, as discussed above, several barriers remain that can still impede access to quality and equitable care despite these advances.
To reduce the burden on individual patients, caregivers, and loved ones, as well as society at large, we collectively must place more focus on patients and patient-centered care so that more people living with OSA can successfully access and experience the benefits of these innovations.
Rebuilding Patient Trust
Advocacy is key in rebuilding trust and confidence among OSA patients, many of whom were shaken by the FDA’s three-year recall of Philips Respironics PAP devices.7 Initially, many patients were unaware of the recall—and those who were aware encountered conflicting information and limited guidance. Decisions made during the recall were not customized to individual patient needs, leading to financial burdens and disruptions in treatment, and lack of proper communication deeply eroded patient trust in the medical system.
Even after three years, concerns persist about potential long-term health risks from exposure to toxic fumes caused by the breakdown of sound-abatement foam in the devices. One of the largest medical device recalls in history, it resulted in a major public health crisis that illuminated significant gaps in policy, communication, and healthcare preparedness that led to a complete breakdown of healthcare delivery for patients. The recall had a tremendous impact on patients’ health, and providers lacked the necessary information and guidance to handle patient needs. More importantly, this crisis underscored the urgent need for innovation to ensure patient access to multiple safe and effective treatment options.
Restoring patient trust in the medical system requires a strong patient advocacy network that amplifies patient voices, concerns, and interests, fosters industry accountability, and promotes open pathways for industry innovation and patient access. The Alliance of Sleep Apnea Partners (ASAP) continues to build and strengthen alliances with physicians, advocacy organizations, and industry stakeholders to ensure that patient concerns and needs remain at the forefront.
Education and Outreach That Resonates
Education and effective communication are essential for patient advocacy organizations to build trust and empower patients. One of the most critical components in fostering this trust is delivering clear, unbiased messaging tailored to patients’ needs and encouraging them to take action. Advocates use a variety of strategies to ensure their messaging resonates: advocacy toolkits, webinars, newsletters, blog posts, and most importantly, compassionate storytelling that highlights real patient experiences.
Social media campaigns present a powerful opportunity to reach, educate, and empower patients. A robust social media strategy using simple messages or graphics can gain traction for advocacy, as ASAP found with our Sleep Apnea Education Week campaign from April 18-26, 2024. This campaign successfully raised greater awareness and promoted education about sleep apnea and its related comorbidities. Campaign metrics indicated that its performance exceeded industry standards, suggesting that the public trusted our messaging—which, crucially, comes from a patient-oriented organization. By the campaign’s end, we saw a 75 percent increase in newsletter signups and a 98 percent increase in unique website visitors, clear indications in the public’s interest to know more about our organization. Building on the success of this campaign, ASAP remains committed to expanding this social media campaign in 2025 and welcomes others to partner with us to raise greater awareness of OSA.
Beyond social media, ASAP has launched several educational initiatives, including the ongoing Breathing Room webinar and discussion series; the Apnea Stories platform, which allows patients to tell their stories in their own words; and free, publicly available educational resources. Recognizing that the clinical presentation of OSA and its symptoms can differ in women, ASAP developed some of these resources to specifically address their unique needs. Many women do not recognize these symptoms as OSA and if they do, some may be dismissed by their providers or misdiagnosed as having anxiety or depression, which highlights the need for targeted education and advocacy in this patient population.8
Collaboration can drive even more momentum in accelerating positive change. Patients need to be informed about emerging innovations and how to navigate any access barriers. ASAP is committed to serving as a trusted partner—not only for patients but also healthcare providers, industry leaders, government agencies, and other advocacy organizations. Our mission is to make sleep apnea a national priority while ensuring that policies support and protect patients.
On the policy front, we actively engage with federal agencies, providing input on policy-related matters to ensure that patient voices are amplified and patient perspectives are prioritized. We are committed to supporting innovation but also want to ensure that patients have access to safe, efficacious therapies that are cost-effective and work for them.
Ultimately, we all are working toward a shared goal: that every patient is able to receive an accurate and timely diagnosis with access to multiple treatment options that effectively manage their OSA symptoms, improving their health, relationships, and overall quality of life.
By Monica P. Mallampalli, PhD, MSc, is the chief executive officer of the Alliance of Sleep Apnea Partners.
Source: SleepWorld Magazine March/April 2025
References
- Redline S, Azarbarzin A, Peker Y. Obstructive sleep apnoea heterogeneity and cardiovascular disease. Nat Rev Cardiol. 2023;20(8):560-73. doi: 10.1038/s41569-023-00846-6.
- U.S. Food and Drug Administration. FDA approves first medication for obstructive sleep apnea. Published December 20, 2024. Accessed February 11, 2025. https://www.fda.gov/news-events/press-announcements/fda-approves-first-medication-obstructive-sleep-apnea.
- SNS Insider. Global sleep apnea devices market size to hit USD 9.43 billion by 2032, growing at a CAGR of 6.74%. Published January 21, 2025. Accessed February 11, 2025. https://finance.yahoo.com/news/global-sleep-apnea-devices-market-125800933.html.
- Benjafield AV, Ayas NT, Eastwood PR, et al. Estimation of the global prevalence and burden of obstructive sleep apnoea: a literature-based analysis. Lancet Respir Med. 2019;7(8):687-98. doi: 10.1016/S2213-2600(19)30198-5.
- American Academy of Sleep Medicine. Obstructive sleep apnea indicator report. Published April 4, 2023. Accessed February 11, 2025. https://sleepeducation.org/wp-content/uploads/2023/03/obstructive-sleep-apnea-indicator-report.pdf.
- Randerath W, de Lange J, Hedner J, et al. Current and novel treatment options for obstructive sleep apnoea. ERJ Open Res. 2022;8(2):00126-2022. doi:10.1183/23120541.00126-2022
- Alliance of Sleep Apnea Partners. The Philips Respironics recall: shaping policy for better patient outcomes. https://www.apneapartners.org/philips-recall-information. Published October 30, 2024. Accessed February 11, 2025.
- Mallampalli MP, Carter CL. Exploring sex and gender differences in sleep health: a Society for Women’s Health Research Report. J Womens Health (Larchmt). 2014;23(7):553-62. doi:10.1089/jwh.2014.4816.
