Today, we face an unacceptable situation with Sleep Apnea. Sleep Apnea is a chronic, serious disease that approximately 30 million Americans have, only 10% of whom have been diagnosed. Although the disease is completely treatable with the “gold standard” of positive airway pressure (“PAP”), of those who use PAP therapy, nearly half fail and go untreated. Untreated Sleep Apnea in turn fuels an epidemic of diabetes, heart disease, obesity, hypertension and other ailments that costs the American taxpayer billions of dollars.
The good news
is that we can improve our situation dramatically if we call attention to a patient-focused agenda: poor patient compliance leads to a vicious circle of skepticism among physicians, patients and others that PAP treatment can be effective, so fewer people who need help are diagnosed and treated. The bad news
is that the system is currently set up to put the interests of the large corporations and medical professionals over the interests of patients.
As we welcome in a new administration in Washington, we believe we patients have a rare window of opportunity to influence policy as it applies to Sleep Apnea. So we are pulling together a patient-focused agenda we’re calling the “PAPer Bill of Rights,” a draft of which is set forth below.
We ask that you do the following:
1. Give your feedback on the PAPer Bill of Rights during the "comment period," which starts today and ends on January 31, 2009. Just as important, send the following link to your friends and family so that they can give their feedback: http://www.sleepguide.com/profiles/blogs/paper-bill-of-rights-your
2. Look out for the final version on February 1, 2009. At that time, we will circulate the final version for your signature and for you to obtain the signature of your family and friends.
3. After the signatures have been obtained, we will dispatch the PAPer Bill of Rights to the heads of the American Academy of Sleep Medicine and the American Sleep Apnea Association, the President-elect and our congressional representatives, among other key policy makers so that they can act on our feedback when establishing the national agenda for Sleep Apnea.
The SleepGuide.com Crew
PAPer Bill of Rights
Successful treatment with positive airway pressure ("PAP") for obstructive sleep apnea or adaptive servo-ventilation ("ASV") for central sleep apnea, needs to be redefined so that mere usage of the machine doesn't cut it (currently, a patient is "successfully complying" with PAP therapy if he/she is using the PAP machine >4 hours a night for 70% of nights)
Successful compliance means that yes, the machines are being used, but also that they are also being used properly
so that the user achieves an AHI at or under 5 whenever possible, and a leak rate within manufacturers' established ranges for the masks they are using
Data-capable machines should be prescribed exclusively going forward so that users have some objective measure of their treatment's success
Users should be provided with masks that are effective and comfortable
for them, and should be allowed to switch up masks until these criteria are met
Upon being prescribed a device, users should be informed of the full range of features and accessories that can be brought to bear to make therapy more comfortable: the existence of heated humidifiers; auto-adjusting machines and other machines that provide comfort features, such as exhalation relief; and fleece sleeves for the 6' tubing near the face that adds comfort and also helps to prevent "rainout," among other “comfort features”
To the extent Medicare or insurance will not cover a “comfort feature,” users should still be informed of them so that they have an opportunity to pay out of pocket if they so desire
Upon being prescribed a device, users should be informed of the need to replace masks, tubing, mask cushions and other equipment, and should be told how often to clean and replace the equipment and the fact that most insurers will pay for the parts to be replaced on a regular basis.
Users of data-capable machines should have full, unfettered access to their detailed compliance data (that is, compliance data the machine can record, but which is not provided on the machines’ display screens)
A doctor, respiratory therapist or other clinician should intervene within a 48 hour period of becoming aware of a problem, and work with the user on a mutually agreeable solution – because patients will have access to detailed compliance data, patients will be able to “flag” problems more easily and bring them to the attention of a clinician
If clinicians are unwilling or unable to address a problem within the prescribed 48-hour period, users should be provided with the information needed to make adjustments to their machines themselves if they desire to do so