Attending Conferences: A Patient's Perspective

Jean Rommes, COPD State Captain and Advocate

As a member of the ATS Public Advisory Roundtable (ATS PAR), I was invited to attend the ATS annual conference in San Francisco. I represented EFFORTS (Emphysema Foundation For Our Right To Survive), an on-line advocacy and support group for people with COPD on PAR. EFFORTS has been sending people to the ATS conference for many years, so I have been attending for nearly 10 years- this year with some additional responsibilities.

As an ATS PAR member, I had responsibilities to attend and help with the PAR events, especially the Patient Day which is always held, the day the conference officially opens. The day began with the PAR business meeting and continued as PAR members welcomed patients, made sure they got to the right rooms and knew where the oxygen refill stations were located. The day included lunch for everyone and time to sit at tables with experts in the field. It was a long day and required a lot of moving from place to place, something that is made more difficult when you’re juggling your O2 tank, your laptop and your conference materials.

As a PAR member I worked with the moderator of a scientific session on Pulmonary Rehab Education to identify a patient who was willing to speak and present the patient’s perspective at the session. There were committee meetings, committee dinners, the ATS PAR symposium and the PAR dinner. I’m also involved with the COPD Foundation. I sit on the Medical and Scientific Advisory Committee, on the Board for the PPRN, and am a Principal Investigator for the RELIANCE study.

There were many obligations for those commitments. I also had commitments for EFFORTS. All of these required moving from building to building at the Mosconi Center and within the Marriott Hotel, where many of the meetings were held, with very little time in between.

When I first began planning for this event, one of my major concerns was O2. I have a portable oxygen concentrator (POC) for flying, and I can sleep with it if necessary, but for San Francisco, I figured I would need a concentrator for my room and at least three C tanks for each day if I were going to walk to everything. I can’t get liquid oxygen (LOX) in San Francisco, or much of anyplace else when I travel, so C tanks with my SmartDose regulator are the best substitute. I figured I would have to return to my hotel room at least three times each day to replace tanks that were running low, or worse, empty. Since I had been to ATS in San Francisco before, I had a good idea of the distances between the three Mosconi Center Buildings and between those buildings and the hotel, so I knew about how long it would take to travel from any of the conference buildings to the hotel and back again: about 15 minutes each way, allowing for slow but steady walking and a stop or two to catch my breath. That is significantly slower than I usually walk, but carrying conference materials, my laptop and the C tank would add as much as 12 pounds to the load and would mean I would have to go slower.

When I have attended this conference in the past, I didn’t have nearly as many obligations and could give myself more time. I knew that in order to honor my obligations, I couldn’t take that kind of time. It was also clear that some of the trips to replenish my O2 supply would occur at times I was supposed to be attending meetings. This was not going to be acceptable.

Last year in Denver, I rented a scooter for one day to conserve O2 so I wouldn’t have to return to the hotel to replenish my supply. That would be a solution! Having a scooter would mean that I wouldn’t need the C tanks because I could be seated or walk only relatively short distances, which I can do safely and comfortably without O2, or I could use my portable oxygen concentrator (POC) (which weighs about 9 pounds with its case and a 24-volt battery. I do have a backpack for it, but that wouldn’t fit in the suitcase). A Google search turned up a company that rented scooters in San Francisco! A phone conversation with them got me use of the scooter for three days (Sunday, Monday and Tuesday) at a cost of about $275.00. This isn’t covered by insurance (I’m on Medicare) so it would come out of my pocket. I’m fortunate to have the resources to be able to afford this necessity. The scooter was actually delivered on Friday evening and was waiting for me at the hotel; I wasn’t charged for the extra day because they didn’t deliver on Saturdays. Timing is everything!

The scooter indeed made Sunday, Monday and Tuesday much easier for me. I was able to get from place to place quickly and easily and was on time for most of my meetings. The only real hitch was when one of the sessions I needed to attend was on the fourth floor of the West Mosconi Building. The only elevator that went to the fourth floor had been removed for a renovation project and they had installed a lift that went up the last flight of stairs. Unfortunately, to run the lift required a maintenance person. I got to the room on time, but when I left to get to another meeting, it took more than 10 minutes to get a maintenance man to the lift, and then I had to show him how to use it. The lift was also incredibly slow, so I was late for my next meeting. Now I know how people with mobility issues feel!

The scooter made the conference a much more comfortable place for me. With it, I was able to get from place to place on time, didn’t have to carry O2, didn’t have to go back to the room to replenish my O2 supply and had plenty of energy to participate fully in everything that was on my agenda. I was able to attend several of the scientific sessions and could wander the exhibit area easily.

My experiences aren’t unusual for patients who attend the ATS and other professional conferences. It’s generally not a patient-friendly environment. It’s fast paced, it requires a lot of walking and takes a lot of energy. If you use O2, there’s no place to get a refill if you’re lucky enough to be able to get LOX or to exchange empty tanks for full ones.

I recently attended COPD10 in Birmingham, England. Because I wasn’t able to arrange for O2 using my US based provider, I decided I would have to do the entire trip using my POC. That decision required a totally different approach, because I would need the two-wheeled cart that the POC company provides for the unit for the conference and for sightseeing after the conference. I don’t use the cart ordinarily because it only holds the POC, and I usually have business materials and a laptop. For the conference I would minimize what I needed to carry, and for sightseeing I would use my backpack for necessities. I found that the cart would fit inside my carry-on luggage, which solved the problem of getting it there with me without having three wheeled items to manage, since the POC fits on top of my carry-on.

The planning required to attend these conferences begins to resemble a military operation, with logistics, material organization and supply lines becoming exceedingly important. I’ve found that the most important thing I have in my arsenal is a good imagination and a mindset that focuses on how I can do something rather than on all the reasons I can’t. With COPD this is an absolute necessity! In spite of the problems associated with planning for a successful conference, it’s something I really enjoy and find extremely satisfying, so I’m going to continue to do it as long as it’s fun. I would encourage all patients to begin to get involved in advocacy work. It takes planning, but you can make such a difference!

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