4 posts tagged “insurance”

Team of Advisors member Kimberly shares part two of her insurance series

Posted September 20th, 2017 by


Kimberly (firefly84) is part of the PatientsLikeMe 2016-2017 Team of Advisors and is living with autonomic neuropathy, a rare disease which forced an end to her career as a Registered Nurse. In part 1 of her insurance series, she tells the story of how eight of her doctors became out-of-network overnight, and how she navigated the system to replace those providers. In part 2, she shares tips and insights into what to know when dealing with insurance companies, what kind of documents you should take note of and how to understand your pharmacy benefits. Here’s what she shared…


Most of you have probably played the game “telephone” when you were younger. The first person whispers something to the next and it goes down the line of people until the last person says what they were told. 99% of the time, the result was absolutely nothing related to the original statement. Things got misconstrued, wording got changed, and as a result it was totally wrong. Well the same goes for health insurance and healthcare in general. The saying, “If it isn’t documented, it didn’t happen,” is used all the time.

Unlocking good habits

Documentation is the key to healthcare. There are many times when we speak to someone who passes that message along to another person, and your original question has likely been reworded in some form. If you don’t remember anything else from this blog, here is what I want to plant in your head: Document! How many times have you called a doctor’s office or insurance company, had a conversation and then hung up the phone without giving it a second thought? How many times have you taken notes during conversations or written a summary afterwards regarding the content? My guess for many of us would be zero, zip, zilch, nada! You’ve always assumed that the information that was passed along would be correct and that whoever was answering your questions was documenting everything you said.

Start making it a habit of keeping a notebook for your healthcare conversations. That way if there is ever a question of what was discussed, you can refer back to it. If possible, use patient portals if they are available through your doctor or insurance company. Most, if not all of them have messaging features, which is a simple way to ensure things are documented. My practice has always been to attempt to send messages for non-urgent matters. This can also be used for evidence if anything becomes a legal issue.

Knowing your coverage inside and out

No matter what insurance you have, it is essential to know what doctors and facilities are covered. If you have private or employer-based insurance, who is in your network? Are there differences in your in-network vs. out-of-network coverage?

A handy place to find this information is on your insurance company’s website. Most companies have a link that lets you search for doctors and facilities. Your insurance will have your PCP (primary care physician) listed already – make sure that it is correct and update it if there is a change.

Do you remember the pile of paperwork that you received when you got your current insurance? Did you read it? I mean REALLY read it! If you’re like many consumers, you probably skimmed through your Summary of Benefits and were able to see a brief overview of what your deductible, copay, premiums, and out-of-pocket maximum amount were. It also described the difference between coverage for in and out-of-network coverage.

The Certificate of Coverage is going to be your “bible,” if you will. It is the 70+ page document that goes into every detail you ever wanted to know about your coverage. This is a document that I highly recommend you read. If you ever have doubts or questions about anything, this is where the fine print is at. It also will address how to file an appeal or grievance.

Taking a closer look at the types of insurance

Maybe it’s time to look for something more affordable or perhaps you are just coming off someone else’s plan. No matter the circumstances, insurance is something that can be very confusing. Premiums, deductibles, copays, blah, blah, blah. What does it mean? That’s what I can imagine going through your head. Brace yourself for a tidal wave of information.

If you’re wondering what the different types of insurance are, you’re in luck. It’s time for a bare necessities lesson (minus the singing and dancing). Check out this handy one page I wrote that shows the types of public and private insurance available.

Understanding your pharmacy options

Often there will be a Pharmacy Rider, which will list the tiers or classifications of medications for coverage. A rule of thumb is that a generic drug is always less expensive than a brand name. Some patients are unable to tolerate generics or experience a different response than with the brand name, if that’s the case you can ask your provider to file a prior authorization form with your insurance company showing you’ve tried generic alternatives of the drug which have not had the desired effect, and you’ll need to be prescribed the brand name version only. Once again, this information can usually be found in the certificate of coverage or by simply calling customer service.

In addition to your pharmacy coverage, there are many programs available for patients with private or employer-based insurance. Almost all pharmaceutical companies have financial assistance available or will offer copay cards for newer medications. This is the case very frequently for injectable medications.

Also, don’t hesitate to do an internet search. There are a lot of free drug discount cards available. However, many of them cannot be used in conjunction with insurance. That is a detail that you will have to clarify.

I truly hope that this blog has been helpful. There are so many different things that go on within a single policy for one patient that it can be overwhelming. Always ask if there is ever doubt, and DOCUMENT. Don’t play the telephone game!

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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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