by Kathy Page, ASAP Board of Directors Vice-Chair
This post is adapted from a presentation that Kathy made at the American Thoracic Society conference in Washington, D.C., in May 2023 and is based on her personal experience.
As a person with obstructive sleep apnea (OSA), I use a CPAP machine with a full-face mask. When I was diagnosed, that was the only treatment option I was given. This is the case with most sleep apnea patients. The National Institutes of Health states that only 34% of CPAP users adhere to therapy. I hope that this discussion will provide other options to help raise that percentage.
Issues Patients Face
Patients with obstructive sleep apnea face a number of challenges as soon as they are diagnosed. These include the following:
Lack of support after diagnosis
For most newly diagnosed sleep apnea patients, there is little or no support after diagnosis. It isn’t always easy to find a qualified doctor to diagnose/follow up on sleep apnea. Where do we start looking? Will our insurance accept this doctor? Rural areas create another problem, as medical help or doctors might be far away.
Finding reliable information can be a problem. Many older adults are not computer-literate, and that is often the only way to find information. Rural areas again create issues because of faulty or no internet service. These are the same problems for finding a good support group, as most are online.
Difficulty finding the right fit
Finding the right machine and mask is often a struggle. I tried eight different masks before I found one that worked for me.
High cost of insurance
There are often a lot of costs associated with an obstructive sleep apnea diagnosis. When it comes to multiple sleep studies or trying more than one mask or machine, insurance often won’t pay or requires a lot of hoops to jump through.
There are doctor visits; always more than just one is needed—and often with more than one doctor. All of the necessary tests and visits take time away from work. Some employers understand; some do not.
Hurdles related to travel and other barriers
It is very hard coming to terms with the fact that sleep apnea is a lifelong health issue (for most people). It will not go away. If left untreated, it can affect or cause other health issues, such as diabetes, heart issues, and other sleep issues.
There is a social stigma attached. Mask marks are unsightly and visible to other people, who do not hesitate to point them out. Many people think sleep apnea is not a real threat and will tell you that too. And there is a personal stigma attached. The CPAP mask looks ugly and can affect self-confidence. It’s like sleeping with Darth Vader.
Travel issues are another hurdle. A CPAP is extra baggage. While we may not have to pay for it, it is just another bag to carry. Airlines often still require CPAP machines to be taken out of the bag to go through security. We have the right to ask them to put on clean gloves before handling equipment, but that isn’t always a request they answer.
Most CPAP machines also require distilled water. You can’t carry enough with you and might not have easy access to buying it when you arrive.
What Patients Need
Having this panel session at ATS impresses me, because someone—or several someones—are trying to come up with therapies other than CPAP. I was a patient advisor when Inspire was first looking to gain FDA approval for their implant. I went into the meeting feeling that the implant would not be useful for sleep apnea patients, considering how invasive the treatment was. After listening to sleep apnea patients who could not use CPAP for various reasons and were finally able to get some relief, I realized this was a very viable option for some sleep apnea patients. I hope to find out the same today with these therapies.
So, although I am very happy to hear about new therapies being researched and developed, I do wonder how much patient input was used in developing these therapies? What were the deciding factors in coming up with these therapies?
Sleep apnea patients need therapies that are proven to be effective. We need to know
· How does this therapy work?
· Will it work for me?
· What is the success rate?
· How do we find doctors or information dealing with any alternate therapies? It often takes months to get to see a new doctor.
· How do we know what questions to ask about any new therapy?
We really need follow-up from doctors who will monitor our therapies and progress, and who will make changes as needed.
We need therapies that are cost-effective. Not everyone has this issue, but I am three hours away from any hospitals or doctors that might offer alternative therapies. That’s a huge commitment of time and resources, especially when multiple trips are needed.
Insurance reimbursement does not cover all costs, and most sleep apnea patients cannot afford to pay for treatment without insurance.
We need therapies that are not complicated or cumbersome, that are easy to use and understand. It was several weeks after my diagnosis before I learned that a nasal pillow wasn’t an actual, fancy pillow.
We need it understood that terms such as “hypopneas” or “comorbidities” are not part of our everyday vocabulary.
We need help that is not a deterrent to sleep partners (it’s more of an issue than you might think). Easier travel with less baggage and no need for security inspections would be an immense help.
Many sleep apnea patients stop their current therapies or stop looking for alternative therapies because they become emotionally, physically, and financially exhausted.
The information I have presented really just boils down to these points:
· Sleep apnea patients want to be heard.
· We want to know that we are important to doctors, researchers, and clinicians.
· We want to know we are not alone.
· We NEED hope.
Looking for alternative therapies is a huge step in the right direction. Sleep apnea patients are ready and willing to help build those steps. I look forward to what the future holds.