If you're living with a chronic illness, you're in the right place.

Friday, August 29, 2014

Why You Should Have Medical Power of Attorney

1:44 PM Posted by Tiffany Taft ,
This week one of my clients who is undergoing a rather major surgery today asked me if she should write down some of her wishes in the event something went wrong.  She was thinking more along the lines of a last will and testament, but the conversation steered to documenting her wishes for lifesaving medical treatment.  This client is in her 20s, so not exactly the age where you typically think about end-of-life issues.  That's for our parents or grandparents, right?  Nope.  No matter your age, and really your health status, you should consider having a medical power of attorney.

For those of us who live with a chronic medical illness, this becomes a bit more salient.  We often undergo procedures, take regular medications that may have risky side effects, or will need surgery.  Obviously the odds of something going wrong are typically quite small, but as they say - shit happens.  Having a medical power of attorney can better guarantee that your wishes will be adhered to should something go catastrophically wrong.  Without a medical power of attorney, things can get messy.  Remember the case of Terri Schiavo?  That went all the way to Congress, the White House, and the U.S. Supreme Court in a highly publicized, and rather bitter battle, between her family and her husband about Terri's right to die.

So what is medical power of attorney, exactly?  A person whom you grant this role is in charge of informing the hospital, your doctors, and any other interested parties in your preferences for what medical treatments you want, and do not want, should you not be able to speak for yourself - often called your "agent."  The legal term for you not being able to speak for yourself is "lacking capacity" which means you can't understand the nature and consequences of healthcare choices available and/or you're unable to communicate your wishes through speech, writing, or gestures.

So this is a pretty big deal.  You want to choose a person who you trust to put your best interest above anyone else, who has the strength to advocate for you when you cannot, and will ensure what you document is actually followed.

Every state has their own medical power of attorney forms that can be downloaded off the internet for free (Here's the Illinois form as an example). Simply google "medical power of attorney + [your state]" to find one.  There is no need to use a lawyer unless you would like legal counsel.  The forms are self-explanatory and easy to fill out.

After you decide who your primary power of attorney agent will be, you'll need to select at least 2 backups. These are in case your primary person cannot (or will not) perform their role.  These alternates should have the same qualities of the first person you select.

On a typical form, there are 3 options to choose from regarding medical treatment.  You should also be able to write any additional comments on the free form about treatments you would like or would want withheld.  Typical options include:
  1. I do not want my life to be prolonged nor do I want life-sustaining treatment to be provided or continued if my agent believes the burdens of the treatment outweigh the expected benefits. I want my agent to consider the relief of suffering, the expense involved and the quality as well as the possible extension of my life in making decisions concerning life-sustaining treatment.
  2. I want my life to be prolonged and I want life-sustaining treatment to be provided or continued, unless I am, in the opinion of my attending physician, in accordance with reasonable medical standards at the time of reference, in a state of “permanent unconsciousness” or suffer from an “incurable or irreversible condition” or “terminal condition”, as those terms are defined in Section 4-4 of the Illinois Power of Attorney Act. If and when I am in any one of these states or conditions, I want life-sustaining treatment to be withheld or discontinued.
  3. I want my life to be prolonged to the greatest extent possible in accordance with reasonable medical standards without regard to my condition, the chances I have for recovery or the cost of the procedures.
The good news is you can amend your medical power of attorney documents at any time, should your opinions change about what you would like.  It is a legally binding document that hospitals and physicians must abide by, so it should be kept in a secure place that those designated on the form are aware of and can access.

Please remember that this form can be challenged or nullified, but it's difficult to do unless you're the one making the change.  Here are a few times this may happen:

  • You revoke the document.
  • If you're married and put your spouse down as your medical power of attorney then get divorced, then the agreement is nullified.
  • Someone argues in front of a court that you were not of sound mind and judgment when you filled out the forms, and the court agrees.  
  • Someone argues in front of a court that your primary agent is not acting in your best interest, and the court agrees.  Your first alternate will assume the role.
This is a personal, yet important, decision to discuss with your family and the people you want to act on your behalf for healthcare decisions.  Hopefully you'll never need it, but it's nice to know it's there if you do.

Dr. T

Saturday, August 16, 2014

Through the Insurance Wormhole

5:56 AM Posted by Tiffany Taft , , ,
I went back and forth about writing this blog entry because it teeters on being too personal, as this is our practice blog and we, as therapists, need to maintain appropriate boundaries in life.  It's good for everyone involved.  I decided to write it with the intention to show that no matter one's status in this world, chronic illness is the great leveler of the playing field - specifically when it comes to health insurance.

Side note:  The title to this entry is borrowed from Morgan Freeman's television show Through the Wormhole, a show dedicated to "understanding the deepest mysteries of existence."  So you may want to read it in his voice for added effects.
I wrote a few days ago about being denied by my insurance company for a medication for Crohn's disease.  Not uncommon and certainly not something I haven't dealt with in the past.  The thing making this orders more complicated, and urgent, is my being scheduled for a repeat cesarean section on October 22nd.  Roughly 9 weeks from now.  My obstetrician emphasized at my last visit the importance of the disease being under control for things like, oh, wound healing.  

If I read the denial letter I received from my insurance company - which I should note isn't some mom and pop, rinky-dink company that you might expect to be more frugal, it states:

No clinical information has been received indicating you had inadequate response, intolerance, or contraindication to Humira.  

When I was on Cimzia before, I had different insurance.  The letter provides the coverage policy used, so I looked it up.  Apparently, if I didn't have an employer based plan but an "Individual and Family Benefits" plan Cimzia would be covered without the Humira stipulation.  
Huh?  Through the wormhole.

So I saw my gastroenterologist yesterday for an hour to discuss what my options were considering this denial of coverage.

Side note:  While I was the last patient of her day, if your doctor is running ridiculously behind schedule please consider (if you don't already, anyway) that he or she may be sitting with someone like me, that they're mandated by insurance to schedule in 15 minute blocks of time for return patients, and it's going to take more than that to sift through problems.  

In my discussion with my doctor, we talked about my options which included: 1) using Humira instead, 2) using prednisone for the short term, 3) doing nothing and waiting.  Let's start with #1.

Both Humira and Cimzia are in the same class of drugs which selectively suppress the immune system.  This same class of drugs have been a miracle for people living with not only IBD, but other autoimmune diseases.  They're also exorbitantly expensive, costing around $2,000 per month.  You may have seen commercials for Humira on television that include the person in the low, fast voice reading off potential side effects.  One of these is being more susceptible to opportunistic infections.  According to my doctor, Humira crosses the placenta much more than Cimzia (something about molecule sizes) so babies born to moms on Humira are pretty immune suppressed.  She said it's best not to expose my kid to any situations where infections are more abound, which includes no daycare for 6 months (I plan to return to work full time after 3), and delay all live vaccinations.  

Takeaway:  Your baby should live in a bubble for 6 months or risk catching some weird disease that he may not be able to fight off.  In my insurance company's decision process, this is a better idea than allowing me to take Cimzia and mitigate that risk.  Huh?  Through the wormhole.

To be fair, I'm guessing the department denying my medication has no clue that I'm pregnant even though I have several obstetrician claims with a billing code of pregnancy in the last 6 months in their system.  Going to guess those aren't linked up to make any type of deductive reasoning possible. 

On to #2:  Take prednisone.  Anyone who's ever taken prednisone can attest that it's a love/hate relationship.  The drug is older than I am and kicks ass and takes names for any inflammation going on in the body.  It's used widely for all sorts of problems and, in the past, was the go-to treatment for IBD. The problem with prednisone is its litany of side effects that start a couple of weeks into its use.  These include:  insomnia, weight gain due to increased appetite, water retention, acne, high blood pressure, bone loss, high blood sugar, irritability, depression, anxiety, psychosis (rare), moonface (swelling of the cheeks), and my personal favorite "buffalo hump" or a swelling of the skin on the back of the neck.  I've had 1 experience with long-term prednisone use, which was around 3 months, over 10 years ago and did have some side effects.  While prednisone is a category A or B drug for pregnancy, depending on who you ask, and is considered safe for the baby it comes with risks for the pregnancy itself:  high blood pressure which can lead to pre-eclampsia and high blood sugar which can lead to gestational diabetes.  Since prednisone is a drug as old as dirt, it costs about $10 a month for large quantities.

Takeaway:  Hey you might get severe complications for your pregnancy, but you can't beat the price on this drug so we'll cover this but not Cimzia.  Because, cha-ching!  Through the wormhole.

Side note:  My doctor put this whole denial thing into perspective.  There are about 1 million people in the US with Crohn's disease.  Let's say any one insurance carrier covers around 10% of them and assume all 100,000 of these patients are taking either Humira or Cimzia.  The simple act of delaying treatment for 30 days for each person results in net savings of $200 million for the company (100,000 x $2,000).  
Finally, #3:  Do nothing.  Hope for the best.  Gamble that my insurance company will approve Cimzia in a relatively fast timeframe (it's been a week since the appeal).  I do have a wonderful gastroenterologist who is firm in her convictions about treatments and the like, but ultimately leaves the decision in my hands.  She does her best to make sure it's a very informed decision, and yesterday was no exception.  After digesting (heh) all the information we discussed over that 60 minutes, I decided doing nothing wasn't the best option.  Even though I'd be happiest not taking Cimzia or prednisone, because in my mind I'm not that bad off in terms of symptoms, I know it's stupid to opt for #3.

So, I start 40mg of prednisone today and hope the side effects are minimal.  At least I'll be super productive from the hypomania.  Oh, and insurance-company-that-shall-not-be-named and that whole $200 million savings?  You're welcome.

Friday, August 15, 2014

In the Spotlight: Parkinson's Disease

6:25 AM Posted by Tiffany Taft , ,
When I looked at our Rare Disease of the Month schedule this morning to see what the topic was for this August, I did a double take when I saw it's Parkinson's Disease - considering the recent death of Robin Williams and his wife telling the media he was in the disease's early stages.  Robin also came up a few months ago in our post on Scleroderma, which he also lived with.  It'd be pure speculation to discuss the role of either of these conditions in his decision to end his life.  So instead, let's learn a little about the disease.

Snapshot:  Parkinson's Disease (PD) is a progressive condition that affects the brain by depleting a chemical called dopamine, which in turn leads to problems with bodily movements and cognitive function.  Typically it starts out as a simple tremor in a person's hand, then progresses to trouble controlling limbs, stiffness, and slowing of movements (bradykinesia).  The cause of PD isn't known, but genetics and environmental triggers are thought to play a role.  Medical treatments are available to slow down the disease's progression, but there is no cure.  PD has gained attention in the past decade or so with Michael J. Fox and Muhammad Ali coming forward with their personal struggles with the disease.

How Common is It?
According to the Parkinson's Disease Foundation, PD affects around 1 million people in the United States, with about 60,000 people diagnosed per year, and more than 4 million people worldwide.  All races are affected, but PD appears more often in Caucasians.  Men are also slightly more likely to get PD than women.  Typically PD appears around age 60, but can happen at any time.  PD occurring under the age of 30 years is incredibly rare.  Over the age of 80, rates of PD rise to about 1 in 20 people.

What About Diagnosis and Treatment?
There is no one specific test for PD; rather physicians make the diagnosis based on medical history, symptoms, and physical and neurological evaluations. Often times a doctor will give an anti-Parkinson's medication to test the diagnosis - if the person improves, then PD is confirmed.

Medications that increase dopamine levels in the brain are the first line treatment for PD.  The most effective of these is Carbidopa-Levodopa.  Unfortunately, in some people Levodopa's effects wear off over long term use.  Other medications include drugs that mimic dopamine in the brain (dopamine agonists), and while these may not work as well as Levodopa their effects last longer and can help when Levodopa begins to wear off.  Other drugs include MAO-B inhibitors, COMT inhibitors, anticholinergics, and Amantadine.  Finding the proper dose of medications that affect dopamine is critical as too much of the chemical in the brain can lead to symptoms similar to those seen in schizophrenia.

Non-drug treatments include the implantation of a stimulation device deep in the brain (i.e. deep brain stimulation).  This is typically used after medications no longer work to control PD symptoms as the surgery comes with significant risks and some side effects, however it is considered safe for most people.  The effects can be quite remarkable:

What About the Social and Emotional Impact?
As you can imagine, the social and emotional impacts of PD can be substantial especially as the disease progresses to more severe stages.  Also, PD affects chemicals in the brain that are implicated in anxiety and depression, making it even more challenging to cope with the disease. Rates of depression for people living with PD are about 1 in 3, while around 15% have significant anxiety and 30% develop panic attacks.  20% of people with PD have both anxiety and depression.  Research studies have shown that depression and anxiety vary at different points of the disease, which is similar to many other chronic illnesses. For example, at the very beginning, diagnosis and the process of coming to terms with the fact of having a progressive and disabling illness may be sufficient to cause depression. Later on, progressive deterioration and increasing dependency on others may once again bring on feelings of depression or anxiety. At any stage, a rapid deterioration in functioning or the development or worsening of treatment complications may cause fresh concerns and require a new period of adjustment.

Sexual dysfunction is a common issue for people living with PD.  Social withdrawal due to shame about uncontrolled movements or speech problems, fatigue, mobility challenges, and loss of autonomy is also common.  People with PD may feel like a burden on their loved ones and decide it's better to not try to do activities they once enjoyed because of the help they require.

The Michael J. Fox Foundation offers some good advice for dealing with the emotional impacts of life with PD.  Because depression and anxiety predict poorer health outcomes, it's important to do things to minimize them.

Helpful Resources

The Michael J. Fox Foundation

National Parkinson Foundation

American Parkinson Disease Foundation

Parkinson's Action Network

Tuesday, August 12, 2014


4:48 AM Posted by Tiffany Taft , , ,
Last week, my private health insurance carrier determined that I do not, in fact, need a medication my doctor is trying to prescribe.  I have entered the land of Denial and am currently in the appeals process.  If you live with a chronic medical condition, this may not be a foreign place for you as insurance companies deny coverage for various reasons all the time.  This certainly isn't my first experience here.  It seems like my entire tenure with Crohn's disease has been accentuated by the fact that various insurance companies, either through my own employment or my husband's, have taken a seat at the table for my medical care.
My first was when they were still trying to figure out if I did have Crohn's after a rather fast diagnosis was put into question.  My doctor at the time wanted to order the now standard-of-care capsule endoscopy to get a better look at my small intestines (where my disease is pretty much isolated to).  He couldn't get there with "the hose" (i.e. colonoscopy).  A procedure widely used today was considered "experimental" in 2003, so I never received it.  Instead of covering this procedure, they did go on to cover thousands upon thousands of dollars of tests that ultimately came back inconclusive.  Because, you know, that made total sense.

My second time they came to the table was when my doctor wanted to put me on Humira; again, a now standard-of-care medication in treating Crohn's disease that at the time (2005-ish) was considered "experimental."  It was FDA approved for Rhematoid Arthritis, but clinical trials were ongoing in the IBD world.  My insurance company told me I'd have to go into a clinical trial at a university here in Chicago, demonstrate some response on it, and then they'd cover it.  Thankfully it was an open-label trial and I did receive the drug, which worked quite well.  Later on, after about 9 months in the trial, I was told be someone else at the same insurance company that I really shouldn't have been forced to do that.

Now, I face my third denial.  This time it's not for something considered experimental, as in the past, but for an FDA approved medication that I've taken in the past, as recently as 2011:  Cimzia.  The irony?  My current insurance wants me to take Humira instead.  Sure, they don't know the whole back story of my personal journey with Crohn's medications, but I found that kind of funny.  My doctor's office appealing, which can take up to 60 days.  It's like Cousin Eddie in the Vacation movie series keeps showing up to my house.

Thankfully, I'm not in a major flare up.  Really, it's quite mild and wouldn't be an issue for me if I wasn't 7 months pregnant.  The whole point of me even starting the Cimzia now is to keep any activity at bay and prevent any complications, either during the last 2 months of the pregnancy or shortly thereafter.  The best part of this is the appeals process, if it takes the typical 60 days, will bring me to October 7th, which is 15 days before my scheduled c-section. Add in however long it'll take the mail-order pharmacy to get the medication to me, we're probably looking at under 2 weeks to get started with a medication that takes several weeks to get loaded into ones system.  

But hey, my insurance company may save a few bucks a month if I go on the older drug.  So it's totally worth it.

Unfortunately, my story isn't unique at all and it's probably less rife with fights with insurance companies than others out there.  So what can one do when insurance gets in the way?  Here are a few tips:

Always Appeal.  I'm pretty sure that there's some automated system that just kicks out denial letters when a certain set of criteria are met for a request for coverage.  The insurance company wants you to stop there.  Don't give in.  

Review Your Plan.  Some insurance companies make their coverage policies available online, where you can see if a treatment or procedure is covered.  If yours does not, request a copy, sometimes called the "Evidence of Coverage."

Review Research.  Look into what research has been done on the treatment or procedure you need.  A great online tool is Pubmed, which lists abstracts from most medical research.  Find evidence to support that what you're asking for does work for your condition and include these studies in your appeal.  

Utilize Your Doctor and his/her Staff.  A good doctor will be an active participant in your appeals process.  Ideally, they'll handle the whole process for you by filling out paperwork, writing letters, or speaking to the "experts" on the insurance side on the phone.  If you're not getting enough support from your doctor's office, be persistent.

Take Names and Notes.  Document every conversation you have with your insurance company, including the name/employee ID of any person you speak with about your appeal.  

Call Your HR Department.  If you get insurance through your employer, your human resources department may be able to help by explaining your plan in more detail, advocating on your behalf, or connecting you with documentation or resources to assist with your appeal.

Appeal Denied?  Appeal Again.  There are at least a few steps to the appeals process that you can go through before the door is totally closed.  Even though you may feel defeated or exhausted by the whole thing, don't give in.

Contact Your State.  44 states have an insurance regulator who handles health insurance appeals.  As each state's policies are different, you'll want to contact the office in your region to get information about how to appeal.

Use Expert Resources.  There are many organizations available to help you with the appeals process, including the Patient Advocate Foundation, ACAP, or HealthAdvocate.  Some are non-profit and will help for free, others may require you to pay for their services.

Dr. T.