7 posts by PatientsLikeMe

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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From preclinical to approval: How clinical trials bring new treatments to market

Posted September 15th, 2017 by

Often we hear of new treatments becoming available, but have you ever wondered what each new treatment had to go through to get approved by a regulatory body like the FDA? Before a new treatment is approved for commercialization, it needs to go through a meticulous trial process to prove a number of things: Is the drug safe? What are the potential side effects? Does the drug do what it’s supposed to do? All of these questions and more need to be answered before a drug can be considered for approval by the FDA, so that’s where clinical trials come in. Here’s a breakdown of what’s involved in the drug development process, from preclinical through to commercialization and post-approval monitoring.

(Click to enlarge)

How can I participate in a clinical trial or find out more?

  • You can learn more about research and clinical trials by joining or logging into PatientsLikeMe and clicking on the Research tab
  • Use the PatientsLikeMe Clinical Trial Finder to search for trials that could be a good fit for you
  • Check in with local associations and hospitals to see if they are recruiting for any trials
  • Talk to your healthcare provider/clinician to see if there are opportunities they are aware of and how you can participate
  • If you’re a member of PatientsLikeMe, make sure you consistently update your profile so we can let you know about research survey opportunities that are right for you

Interested in finding out more about how PatientsLikeMe members are impacting change in the clinical trial sphere? Check out these stories:

It’s Clinical Trials Day, and patients are driving change

“My expertise is as a person with Parkinson’s”: Member Lisa brings the patient voice to drug development

Bringing the patient voice to clinical trials

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