5 posts tagged “insurance”

Wheels up! Tips for traveling with a health condition

Posted July 14th, 2017 by

Got summer travel plans? For many, hitting the road with a health condition can take some extra planning, so we’ve gathered tips and tricks – from the PatientsLikeMe forums and beyond – to help you prepare for smooth sailing, start to finish.

Traveling with a chronic illness

Before you go

Bring a buddy. Traveling with someone – whether a spouse, niece or friend – can be very helpful when you have extra luggage, medical equipment or a tricky health regimen to stick to during your trip. Traveling by train? Amtrak offers discounts of 15% or more for people with disabilities and their companion.


“If possible, travel with a relative or friend. When making hotel reservations, remember that smaller hotels require less walking. Request a room on the first floor or near an elevator. Request a room with a grab bar in the shower. If traveling by airplane, request a straight-through flight and an aisle seat.” – Member with Parkinson’s disease


Set reminders. Write up your daily treatment plan and ask your travel mate(s) to help you stick with it. Set smartphone reminders, too, so you don’t forget your usual “to-do’s” when you’re away from home.

Talk with your doctor.

  • Ask about any recent symptom flare-ups, motion sickness or sun-safety concerns, changing time zones (and adjusting your medication schedule), and any other questions you have.
  • Check the CDC’s list of symptoms that might mean postponing your trip.
  • Make sure you’re well stocked with prescription meds, plus extra in case of delays – you may need to request a “vacation override” from your doctor or pharmacist.
  • Get a letter from your doctor (on letterhead) stating your condition, treatment regimen and medications. Some items, such as oxygen tanks and needles, may require a doctor’s note to carry onto flights.

Check your insurance coverage. Call your health insurance provider to ask about coverage where you’re traveling. If you’re traveling far or out of the U.S., it may be worth getting travel health insurance – although some members note that they’ve had trouble getting covered for a “pre-existing condition.” Look into it as early as possible.

Also, research trip insurance – a broad policy may protect you if you need to change plans for any reason, health-related or not. 


“Buy travel insurance within 24 hours of purchasing your tickets so your pre-existing conditions can be covered. Read the fine print. I’ve had a lot of good experience with this website: www.insuremytrip.com.” – Member with MS


Make special accommodations. Check with the TSA and your airline or other travel provider(s) to learn about available help, special accommodations and planning ahead for smooth security screenings. Read up on your rights as an airline passenger with disabilities.

“Be aware of services like Curb to Curb Wheelchair service (don’t be too shy… the airport IS huge, and the name of the game is to spend your energy WHEN YOU GET TO your destination, NOT just getting there…!) The service will take you to your plane (right down ton the tarmac if that’s what it takes!) as well as back down to the luggage claim and taxi, etc.” – Member with MS

Traveling with an illness

Pack like a pro. Write down a packing list, thinking of your typical daily routine and the items you use from morning to night. (Hint: Don’t throw away your list! You can use it again for your return trip or down the road.)

Rolling your clothes can help you neatly squeeze more into your suitcase. If you have things that you can’t pack until the last minute (medications), stick a reminder note on the door you’ll exit through for your trip. Important: Pack your medications in your carry-on, in case your checked luggage gets lost. Also, keep your ID, doctor’s note and emergency contact list on you at all times – in English and the language of your destination.


“I went to Europe this summer and if I had to do it again I would write a note in Italian (or any language for the places I was visiting) which explained why I needed to use disabled services. I had a hard time getting access to elevators in the Colosseum.” – Member with MS


During your trip

Make (loose) plans. Remind your travel mates that you might need to take pit stops and time to rest.

“While traveling, meet the needs of your illness. For me, that means trying to get enough sleep (and knowing the signs of not having enough sleep!!) and making sure I get some alone time every couple of days.” – Member with major depressive disorder

Eat (pretty) well. If you follow a specific eating plan because of your condition or if you’re sensitive to dietary changes in general, you may not want to stray too far from your typical menu. Also: hydrate, hydrate, hydrate.

“Make sure you eat wholesome food while traveling. Try to keep your normal diet as much as possible. Traveling is tough on the body! Good luck and enjoy what you can. That is what makes living worthwhile, even if we all had to re-invent ourselves after our diagnosis.” – Member with fibromyalgia

Call ahead for help at tourist sites. Some museums and tourist spots have wheelchairs visitors can use free of charge – try calling ahead to confirm and see if you need a reservation.

After you’re back

Take it easy. If time allows, fit in some downtime after your trip (such as an extra day or two off work), especially if you’ve done a lot of physical activity, changed time zones or feel a cold or bug coming on. Unpacking alone can take a lot of time and energy. But hopefully it was well worth the journey!

Have any travel advice to share? Add a comment here or join the conversation in the forum!


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Team of Advisors member Kimberly’s care team fell apart and she was left with 10 days to build a new one

Posted July 10th, 2017 by

Insurance series part one


Kimberly (firefly84) is part of the PatientsLikeMe 2016-2017 Team of Advisors. She’s living with autonomic neuropathy, a rare disease that  prematurely ended her career as a registered nurse. In her time as an RN, she was often charged with navigating the ins and outs of insurance companies on behalf of her patients, something she says can be like “trying to find a needle in a haystack.” Kimberly tells the story of how eight of her doctors became out-of-network overnight when her insurance changed, and how she navigated the system to replace those providers and get her care team back on track. Here’s her story…

Last fall we knew that there was a strong possibility that there was going to be a change in our employer based insurance, and that turned out to be true. A decision had been made and we received final word ten days prior to the switch. Along with the letter, there was a form that you could fill out if you had a complex case, or needed assistance setting up care. As a patient who happened to have a very complex case, as well as someone who was going to be utilizing resources galore, this form was what I needed. This piece of paper was my golden ticket. It was filled out almost as soon as the envelope was ripped open. I also attached two more pages with everything detailed, so there was nothing left for the imagination. Medications, treatment dates, specialists, and conditions all were listed, so that they had as much information as possible to start the process.

From in-network to out

We were currently with an HMO Provider in the same town, but our new HMO was not part of the same network. After frantically searching to see if ANY of my providers were going to be able to continue caring for me, I sat in shock.


“Eight of the members of my care team (doctors and physician assistants), were now going to be considered out of network.”


I was feeling a little bit like Cinderella, with a midnight curfew and had to work on setting up a new care team FAST! Luckily, I have an amazing primary care physician (PCP), who was still considered in-network, as well as my local hospital. I knew that I would need referrals to get established with new specialists and my PCP initiated the referral process for multiple specialties. Those took a backseat for the moment, as I had a more immediate need. My monthly infusion for my immunodeficiency was scheduled within a week of our plan change, and I knew that I didn’t even have an immunologist anymore, let alone orders for the infusions! Calling back on a whim one more time to ask for a transitional case manager turned out to be the piece of luck that I needed.

A disconnect in healthcare

The transitional case manager was only responsible for making sure that the first two weeks of my care were set up correctly. Prior to the end of the first two weeks of care, I called and asked to be assigned a complex case manager to move forward with. After speaking to triage, I received a phone call that made me really reflect on the multitude of reasons that led people to enter healthcare. After about five minutes on the phone with a nurse for the case management portion, I was asked two questions

Her: “Can you get to doctor appointments?”

Me: “Yes, I find rides all the time because I can’t drive more than 10 miles.”

Her: “Do you need help meeting goals?”

Me: “If by goals you mean symptom control, yes, but if it’s checking blood pressures and reporting back to my physician, then no.”

Then came the moment when I almost completely came unglued. The nurse, who was doing her job, calmly said, “You don’t meet the criteria for complex case management.”


My reply was as polite as I could muster at that point, “I just lost eight doctors, so I don’t have any appointments to get to, how about some help with that?”


I was told that it wasn’t part of their job and then the phone line went dead. Sitting back in shock all I could think of, was what if I was sitting at her desk? Perhaps some customer relation training should be part of the continuing education. I got over the incident as quickly as possible and then called back to triage for case management. We discussed what had transpired and then I was assigned a social worker, who has made the entire transition much easier. Neurology was going to be the next hurdle. I was due for a three-month checkup for my autonomic dysfunction and several other procedures.

These were due the beginning of December and I had given ample warning that if we did not stay on the same schedule for procedures, that I would end up in the hospital with a migraine. Let’s just say that my warning became reality. They believe me now.

Rebuilding a care team

We also found out that nobody in-network treats patients with autonomic issues. So, we were given the choice of two facilities to go to. We picked one and literally the beginning of May was when we had our first neuro visit. This was six months later than my previously scheduled one was supposed to occur.

We have been with this insurance provider for eight months now and still aren’t completely settled. Sometimes I have days that it is a full-time job just to return phone calls or update doctors. Plus, I have a case manager with insurance and a social worker within the facility. Remember the form that was mentioned at the beginning? Well, it got lost; good thing I kept a copy. It has been the guide for my care as we have been moving forward.  If I didn’t have case management background, I would be lost. I would have given up and my disease would have complete control. I never have given up easily and I don’t intend to now. Every day is a new one, full of opportunity, but this has been by far one of the largest challenges that I have faced in this entire illness.

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