Comments delivered at HHS listening session for ACA Essential Health Benefits – October 19, 2011

My name is Edward Grandi. I am the executive director of the American Sleep Apnea Association, the only national nonprofit organization for a condition that conservatively affects 18 million adults in the U.S. I am here to advocate in favor of coverage for sleep apnea as an essential benefit under the insurance policies offered by the Affordable Insurance Exchanges.

The association sponsored a letter-writing campaign to the Secretary asking that sleep apnea not be overlooked in the development of ACA. Sadly, the word “sleep” does not appear once in the 2000 pages document that became the law. Sleep an activity that takes up 1/3 of our lives. Subsequently, letters were written asking that sleep apnea be covered under the exchanges. I am here to reiterate that request to the Secretary.

Prior to 1981 the only treatment options available for OSA was a tracheostomy or radical weight loss. It was also thought that the condition affected only middle-aged overweight men.

Epidemiological data collected in 1993 and published in the New England Journal of Medicine provided proof that the condition has a much higher prevalence among adults than originally thought.

The discovery of positive airway pressure therapy in 1981 as an alternative treatment has made it possible to offer an alternative to the surgical options available at the time.

There is an increasing number of studies associating untreated sleep apnea and the sleep deprivation caused by the chronic intermittent hypoxia can and does exacerbates serious life-threatening and medically cost conditions like heart disease, diabetes and depression.

Inclusion of diagnosis and treatment of sleep apnea could in some cases forestall the development or worsening of some of these more serious conditions thereby reducing healthcare utilization.

Cost effective diagnostic and treatment options exist today and others are likely to be developed that will offset the cost of providing these services to those who are currently uninsured.

By addressing this condition, especially if screening is made part of nay health risk assessment would likely result in a net savings to the system.

I thank you for this opportunity to comment and I am available to the Secretary for further information on how treating this condition crosses all ten categories specified in section 1302 of the ACA.

To sleep, perchance to dream - second presentation

The second presentation on Saturday morning was to interested members of the public on the island. Not surprisingly, there were more of them than members of the healthcare community the evening before.  It is not hurt that my hosts, the Sleep Apnea Association of Curacao, had representatives on the radio a couple days before announcing the meeting.

Dr. Rach and I were now in sync as to who was presenting what and our talks were well received. Following the presentations there was a panel made up of me, Dr. Gerald Rach an ENT, Dr. Ramon Echague Coleman a Pulmonologist (and a graduate of a US medical school who will sit for the Sleep Medicine Boards in November) and Dr. Jean-Jamil Rojer the Oral & Maxillofacial Surgeon graduate of Howard University. The questions included several on the topic of sleep in general - a topic I covered.

My hosts were pleased with the turn out at both meetings and are hopeful about the future of sleep apnea therapy on the island.

For me I am honored to have been asked to speak and hope that my participation contributes in some fashion to improvement of how sleep apnea is diagnosed and treated.

I let everyone know that I am interested in a continuing relationship with patients and physicians alike - and look forward to returning in the near future :)

If you are interested in my slides - Healthcare professionals - http://www.box.net/shared/0vigd7zlbsk4oamdxuyl

Public presentation - http://www.box.net/shared/uzmguliqozbdi73dmxh1

It is not often that I see a rainbow, but this morning was one of those times... a good sign.

To sleep, perchance to dream - first presentation

Yesterday morning was spent visiting several of the physicians involved in treating sleep apnea here on the island - Dr. Rach, the ENT (and my co-presenter) and Dr. Essebom, a pulmonlogist, who operates, rather will operate the only sleep lab on the island.

Besides introductions, the conversations revolved around the presentations, particularly the one last night that was to other physicians, healthcare professionals and representatives of several health insurers on the island.

One item, not originally addressed in my presentation was outlining the various diagnostic options available to treat sleep apnea. Readers know that I feel more attention needs to paid to treatment and follow-up than determining whether disease is present or not. But out of respect for Dr. Essebom I added a slide outlining the CMS decision on diagnostic options.

Arriving at the auditorium of the St Elizabeth's hospital, the only such facility on the island. The hall had the characteristics of an A.W.A.K.E. meeting with chairs arranged theater style and a side room with the display of equipment from the two DME's on the island and food.

Dr. Rach and I took turns presenting. I spoke first with an overview of the importance of sleep and the implications of sleep deprivation. Dr. Rach provided a overview of the pathophysiology of sleep apnea, complete with the sights and sounds of apneic events (much to the amusement of the audience).

I followed him with slides on treatment options and closed with a set of suggestions for next steps in a country where payors are not certain what to cover and why.

After the presentations there was a question and answer session that involve not only the presenters, but also  Dr. Essebom and several other physicians, included a newly minted oral surgeon a graduate from Howard University in DC.

Overall the presentations were well received. Will they have an impact on how the condition is addressed, only time will tell.

Me speaking with the Minister of Health

We did have a VIP attend the session - the Minister of Health for the island came to the meeting to listen and to make an announcement. The government would in two to three weeks license Dr. Essebom's sleep lab making it possible for him to bill the government health insurance program and private insurers for sleep studies.  Currently, people suspected of having sleep apnea are sent off island, at no small expense, for diagnosis and titration.

Today - presentations to the public

To sleep perchance to dream - arrival

After a long day of travel we arrived in Curacao after sunset, so seeing the sites will have to wait until later. We checked in to hotel and then set off in search of dinner with our hosts from the Sleep Apnea Association of Curacao.

It was great to put a face and a voice with the names of people I have communicated with frequently the past few months. Our kindred spirits, doing the work of raising awareness about sleep apnea in a community that has challenges to understand the scope of the problem.

That is where I come in. One of my assignments is to help the healthcare community including health insurers to better understand why it is important to diagnose and successfully treat OSA.

Dinner was outdoors at a lovely seaside restaurant.The conversation ranged from strategies for organizing the meetings on Friday, to helping us better understand the system of healthcare on the island, to hearing stories about the work their association was doing.

Our friends are placing great store in my ability to move the needle on diagnosis and treatment of OSA here. I will not disappoint them.

Onto the meeting with Dr. Rach, the ENT.

To sleep, perchance to dream, to breath

"To sleep, perchance to dream- ay, there's the rub."
Hamlet (III, i, 65-68)

A number of years ago, too many to remember exactly, I received an email from an apnea patient on the island of Curacao who was interested in starting a patient organization similar to the American Sleep Apnea Association.

I am always happy to help and sent copies of educational information we had and the old video... as much as we could fit into a large box, twice, because the first box did not make it.

Over the years there were friendly exchanges of email that always closed with the promise of my visiting the island.

About four months ago I got an email inviting me to visit and asking me to make to two presentations - one to healthcare professionals and one to the general public. To the left is the poster announcing the meeting dates and location.

The decision was made to include a second speaker, an ENT surgeon for the purpose of CME credits.

For the past couple of months I have worked on my presentations... tinkering with themes and images. One concept that I feel very strongly about presenting is the importance of sleep as contributing to a healthy life.  It has become clear to me that it is very nearly impossible to persuade someone about the seriousness of untreated sleep apnea until they understand that without healthy sleep, they can't have a healthy life.

We leave today and I will report as I can from the Neatherland Antilles.