Report on the ASAA Sleep Apnea Summit 9-19-19 (long!)

[Janknitz]

I wanted to give a report on the American Sleep Apnea Association summit in San Francisco on September 19th.

First let me say that many of us here (including me) had a very bad experience with the patient forum on ASAA years ago. The ASAA was definitely run as an industry tool back in the day. I’m sure PR could tell you a lot more because I try to stay out of the politics (please start another thread if you want to go there). There were strict rules against any discussion of changing your own settings and if you dared to post a link to a personal blog (regardless of whether it contained any commercial content) you were banned, and there were many other rules against saying certain things (like daring to suggest anyone increase their pressure when they felt like suffocating) that could get you banned. There was a lot of bad blood, because they were essentially an industry shill back in the day. ASAA sponsored AWAKE chapters, and most of those meetings (I’ve heard, since there was nothing local) were doctors pushing their surgical procedures (mostly UPPs and tongue reduction) and DME’s pushing the latest mask or machine. The organization essentially fell apart as patients got tired of being marketed to while restrained in how we could share helpful information.

The organization has risen from the ashes as a patient-run, patient-led group. I met a group of people passionate about patient empowerment, about getting the word out about diagnosis and treatment. With few exceptions, everyone who presented during the day was an apnea patient, including most of the doctors. Everyone on the board is an apnea patient, including the sole doctor on their board. No DME’s or manufacturers are board members. As far as I know, there was only one board member involved in the insurance industry. He is an apnea patient himself who writes policies for truckers.

I know there are still some rivalries going on between ASAA and people here. I’m not going to go there, it doesn’t help anyone to do so, we all have essentially the same goal which is to help ourselves and others with sleep apnea and related issues. No need to rehash old stuff.

If you are interested, the entire day’s presentations can be viewed on the ASAA’s facebook page here: https://www.facebook.com/sleepapneaorg/ ... 471847805/ It will eventually be moved to YouTube. I will post the day’s schedule in the comments if you want to pick and choose what to see.

There WERE industry people there, mostly marketing from Itamar (maker’s of the Watch Pat home testing device), Philips (about all the rep would say is that there are “good things coming”), Fisher Paykel, and a company that makes a stimulator--everyone was suprised there was no rep from ResMed. There were professionals we could talk to in the Round Robins about speech therapy, orthodontic techniques, surgical interventions (and NOBODY among them pushing the UPP procedure—several doctors saying it was not helpful). Nobody was doing heavy marketing. No swag. One guy was not an official presenter or marketer but showed off his self-invented cap with both fixed and dynamic chin straps to help bring the jaw forward and seal the airway for CPAP success.

The patient panels (I was a panelist in the morning session) were really great. Each panelist spoke about their sleep apnea issues, and a moderator helped with the discussions. My fellow panelists were very brave to talk about their experiences! Karen spoke about learning her “mild cognitive impairment” was caused by sleep apnea, and how treatment turned that around for her. Brian fell asleep at the wheel and hit five cars (miraculously nobody was hurt!)—that was his wake up call for diagnosing and treating apnea. Matt’s entire life changed when his apnea was finally treated. Ari and Janie had the opportunity to have a team of sleep professionals (allergist, orthodontist, psychologist, ENT, and dental surgeon) consult together on the ongoing difficulties they are having despite trying everything to be successful with PAP therapy. Adam (currently COO of ASAA) spoke about his surgical procedure to widen the nose and palate and how it has had a profound effect on his overall health including improving the neck problems he was having and most importantly his cognitive functioning.

There was a session on the very high risk of suicide in Apnea patients, and other on using data and artificial intelligence to identify and come up with novel treatments for sleep apnea.

Takeaways from the day:
1. There needs to be a greater effort to diagnose and treat apnea in the pediatric population because treatment at a young age can cure some apnea and even when it doesn’t cure it may allow the child with apnea to avoid severe apnea in adulthood. One doctor mentioned that they think some fetuses are showing signs of apnea even in utero. And it was said more than once that we could eliminate as much as 50% of adult sleep apnea by treating children who have it or are at risk.

2. While CPAP is the gold standard, there are some who just cannot be successful with CPAP, and there are newer interventions that can work for some people (stimulators for a very select group of patients, new surgical interventions that don’t sound like the quackery of the past, orthodontia, speech therapy, addressing allergies, etc.) either in conjunction with CPAP or instead of (Adam has had the new palate widening surgical procedure but still needs CPAP).

3. There was a lot of discussion of comorbidities, often caused by sleep apnea and how important it is to get physicians to identify those people and get them tested including: atrial fibrillation (one doctor stated this is ALWAYS caused by sleep apnea, yet AFib patients are only very rarely referred for a sleep study), GERD and LPR (I can say for a fact that hardly anyone with these complaints is ever referred for a sleep study), asthma (particularly in children), obesity (one doctor said it’s not obesity that causes the apnea, it’s apnea that causes the obesity), type II diabetes, etc. Primary care physicians should be educated to consider the diagnosis of apnea for patients who show up with those comorbidities and refer for testing.

4. I spoke personally to Dr. Shannon Sullivan who is a pediatrician who specializes in sleep disorders in children. I was asking her some questions on behalf of my medical student daughter who hopes to be a pediatrician. One of the questions my daughter had was when bipap should be used instead of CPAP and Dr. Sullivan said that people with significant pulmonary or cardiac disease should start out on bipap and she often advocates with insurers to skip the whole “failure with CPAP first” step. She said that if there’s insufficient relief of the expiratory pressure it can make it difficult for the heart and lungs to work effectively. She also said PAP CAN be dangerous for people with congestive heart failure—about 50% of people with CHF do very well and the other 50% DIE, they don’t really know why, yet (speculation is too much pressure interferes with venous return in people with lower extremity edema due to heart failure), so it has to be used with caution in that population. We often say here “it’s just air and it can’t hurt you” but that’s not true for people with CHF who need to work carefully with their doctors and be especially careful about too much inspiratory pressure and insufficient expiratory relief.

They also talked about the CAP program (CPAP Assistance Program) which has been fully revived. It has 2 staff members and I believe they have given out 1,500 new and gently used machines (each with 4 masks and 4 filters!) for a small program fee of $100. If you’re looking for a good place to donate an old CPAP in good condition, they will happily accept it. For a long time, this program was dead, so it’s nice to know that when people come here to ask for help in acquiring a machine, we can send them to this program. It still costs money, but $100 is doable for most who need the financial help (and maybe we could donate "scholarships" for people who can't even afford that).

Finally, I want to say how kind and supportive everyone was there, especially the board members and staff. It was such a positive day. Everyone was on the same page—getting more people diagnosed and optimally treated. I think we have the same goals here, so I, for one, am ready to put aside the negative opinions I had with the association in the past.

As an aside, it was the most spectacularly beautiful day I have EVER seen in San Francisco. There was not the slightest scrap of fog and the temperature was pleasantly in the mid-70’s all day. The event was held at the Persidio of San Francisco (now an historical park, it was an army base since the Civil War and has many beautiful buildings), and the room we were in had huge windows overlooking the bay and the Golden Gate Bridge, and the national cemetary. It was like a postcard. It would have been a great day anyway, but the setting really made it wonderful. I’m really glad I got to participate. Not sure where it will be next year, but if it’s near you, I encourage you to attend. It was definitely worth my time.

[prodigyplace]

Thank you for all the time and effort you put into this.

[chunkyfrog]

Thank you for the report.
I am greatly encouraged by this new direction.

[Abbey sleeps]

So very interesting. Thank you for reporting on this.

[beautifuldreamer]

Janknitz
Thank you for your thorough summary -

This was my first experience with ASAA and AWAKE, and I found the ASAA Staff to be genuinely encouraging, Kind, and very supportive. I was very grateful for the opportunity to participate in the AWAKE Summit.

I was put with the multidisciplinary team to have additional insight into my continued struggle with daytime sleepiness even though my AHI is currently very good/low with my ResMed ASV. For me, one new piece of sleep apnea was the Speech Therapist they had there that gave me exercises to help maintain proper tongue placement. Another suggestion was made to me to consider dual treatment of PAP with Dental Appliance. The Orthodontist who recommended it said it can help to lower pressure levels when used in combination with PAP therapy . . .

During the lunch break, I had an opportunity to talk to the Respironics Rep (who wasn't there to sell anything) spoke about my experience of Respironics devices being very noisy . . . and gave her my wish of having a mask that was made of Certified Organic Material, she mentioned that there was a team working on that project . . .

Also, I was very glad to meet Janknitz (Janice) in person- she is very kind and knowledgeable and very supportive - LOL before I met her I envisioned her being a big burly guy!

[palerider]

I wanted to give a report on the American Sleep Apnea Association summit in San Francisco on September 19th.
... It was definitely worth my time.

Thank you, it's really nice to know the organization has made a complete 180 and is now about helping patients.

[Kiralynx]

Fascinating report.

[Arlene1963]

Thanks Janknitz.

[Mogy]

Great report! Thanks Janknitz.

[Pugsy]

Thank you for taking the time to go, to participate and report on your experience.
We really appreciate it.

[Pad A Cheek]

Thank you very much Janknitz for your report. It is encouraging to see groups we have had experiences with change and become more pro patients. Thank you for being such an advocate.

Karen

[georgelewisray]

Thanks much for sharing !!!

[asleep@thewheel]

https://youtu.be/0gJKdqsq4T4

The link above will take you Janice’s testimonial on YouTube.

Thank you so much for sharing such a wonderful comprehensive recap of our day. We are just beginning.

Stay tuned.

aa

[asleep@thewheel]

Interesting article from American Academy of Pediatrics about ADHD and comorbidities (sleep) – also references the multi-disciplinary approach to care. Hope all is well and have a wonderful weekend!
I thought this was timely and really interesting.

http://www.psychcongress.com/article/ad ... conditions

ADHD-Guideline Update Highlights Importance of Addressing Comorbid Conditions
By Reuters Staff
NEW YORK—The American Academy of Pediatrics (AAP) has updated its 2011 clinical practice guideline on the evaluation, diagnosis and treatment of attention-deficit/hyperactivity disorder (ADHD) in children from age four to 18 years old.
National survey data from 2016 indicate that 9.4% of children in the United States ages two to 17 have been diagnosed with ADHD; almost two-thirds were taking medication for ADHD, and about half had received behavioral treatment. Yet, nearly a quarter had received no treatment.
"Since 2011, much research has occurred, and the Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition (DSM-5), has been released. The new research and DSM- 5 do not, however, support dramatic changes to the previous recommendations," the guideline panel writes.
Therefore, the revised guideline includes only "incremental" updates to the previous guideline, they note. One such update is the addition of a key action statement (KAS) stating the importance of diagnosing and treating comorbid conditions in children and adolescents with ADHD.
These include emotional or behavioral conditions (anxiety, depression, oppositional defiant disorder, conduct disorders, substance use), developmental conditions (learning and language disorders, autism spectrum disorders), and physical conditions (such as tics and sleep apnea).
"Evidence is clear with regard to the legitimacy of the diagnosis of ADHD and the appropriate diagnostic criteria and procedures required to establish a diagnosis, identify comorbid conditions, and effectively treat with both psychosocial and pharmacologic interventions. The steps required to sustain appropriate treatments and achieve successful long-term outcomes remain challenging, however," the panel writes.
The revised guideline was published online September 30 in Pediatrics.
The procedures recommended in the guideline require "spending more time with patients and their families, developing a care management system of contacts with school and other community stakeholders, and providing continuous, coordinated care to the patient and his or her family," they note.
The AAP has also published two supplemental documents with the updated guideline. One is a process of care algorithm (PoCA) for the diagnosis and treatment of children and adolescents with ADHD and the other is an article on systemic barriers to the care of children and adolescents with ADHD.
"These supplemental documents are designed to aid primary care clinicians in implementing the formal recommendations for the evaluation, diagnosis, and treatment of children and adolescents with ADHD," the panel says.
SOURCE: http://bit.ly/2mUG0EF
Pediatrics 2019.
(c) Copyright Thomson Reuters 2019. Click For Restrictions - https://agency.reuters.com/en/copyright.html

[Janknitz]

Thanks!