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The Rant

November 14, 2016

OK so this post started out as a complete rant, but also has some good news.  Although I have known for a few months, I recently received the “official” notice that my oncologist is leaving UW and heading to Arizona for a new opportunity. Not good news in my book.  I really like my oncologist and he has always been great about giving me the facts and then allowing me to make my own choices.  So to have change in doctors is frustrating and a little bit nerve racking.  (I am coming up on my 5 year anniversary of my seizure, which was the start of this wild and crazy ride that I have been on).  From what I can tell, UW is making several changes, so I am not really sure what will happen or who my new oncologist might be.  I know who I would like that new person to be, however I am not sure what UW has in store.  I will find out more at my next MRI in December.  I have spent the last five years telling people to move over to my oncologist because he is the best in Seattle, but now I feel a little bit vulnerable as now I will be missing that key resource.  It is a change as I have always felt like I have had more information than many people in similar cases, like I have had this special edge.  But that might be changing.

In order to try and make sure I am in a good spot, I have been asking other people, who are in my shoes what they are doing.  I also thought I should look into Swedish – as they are the other hospital in Seattle with top notch resources and outside of the UW/SCCA group they are really the only other local choice.  I do know one of the surgeons over there pretty well, thus I thought I would do some research on the oncologists.  They recently brought on a new neuro-oncologist, whom I have not seen at events or really heard about.  So I called over to Swedish to see if they were taking on new patients, etc.  I asked if I could schedule a time to “interview” the oncologist to see if he would be someone I want to work with.  The person I was speaking with, was a little bit shocked by my request.  The response was well you need to be a patient to meet with the doctor.  Meaning I would have to go through the new patient setup and have all of my records sent over to Swedish.  My response was, “well I am not sure that I want to be a patient and I don’t want to waste the doctor’s time reviewing all of my files and data, when I may not become a patient at all.”  In my head I wanted to say that actually your surgeon has a USB drive with all of my latest MRI’s and has been already giving me some unofficial second opinions for a while now.  The person on the phone explained that they would look into this and get right back to me.  Over a week went by and still no follow-up.  Thus I finally called back to see what was going on.  I got a hold of the same person, they put me on hold and checked with a colleague and came back with the response that no they don’t allow doctors to just “meet” with people and/or be “interviewed” to see if someone wants to work with them.  Their doctors just don’t have the time for that.  I have to admit, I was pretty mad when I got off the phone.  Right then it was going to be no Seattle Brain Cancer walk in 2017 for Team Defeat Goliath.  No more supporting Swedish and the Ivy Center.  Furthermore I get that doctors are busy, however I am the one with terminal cancer, I am the one who doesn’t have time.  I was ready to go on the attack.  The medical world should work both ways, I think patients should be able to explore their options and not be forced to become a new patient.  I understand there are costs involved, but in cases of terminal cancer, I think there must be exceptions. I was ready go crazy with my limited reach on social media.  Fire the venom from Twitter, etc.  Pickett the walk and try to get donors to send their funds elsewhere.

Then about 20 minutes after I hung up, I received a call from the Seattle Cancer Care Alliance, it was from their person who works on relations with insurance companies.  Premera had reversed their decision on my case and my proton radiation was now approved.  I asked if that meant they had changed their stance on proton as a whole – meaning this would impact many others – nope, they just approved my individual case.  Which is great news.  However I am still a little grumbly that others won’t be approved.  In my case, I opted for proton over standard treatment because I was concerned about future cognitive loss and I didn’t want the full impact of the side effects from standard radiation.  Well, I did my six weeks, managed to not miss any work.  Side effects were minimal for me.  My first MRI showed Goliath was smaller, thus it can be said that proton therapy worked!  And I would say that I am the perfect test case for why insurance companies should be approving this therapy for all.  Granted the hope is not cognitive issues down the road as well.

I know that someone is going to ask how will that impact me from a financial point of view, and the answer is not much, however it means that SCCA will now be reimbursed for my treatment as I made a deal with them that they would cover all of my costs, past my normal out of pocket expenses.  Thus I am on the hook for those regardless of my insurance.  But a huge win for SCCA to keep money in their pocket!

Which brings me to the final part of this.  Since Tuesday is Election Day, I thought I would give some thought to Obamacare (Ok I started this prior to the election and, based upon the results it will most likely be gone, but I thought I would leave my thoughts out there anyhow – updated slightly):

There are two things it does for me that are huge;

  1. Lifetime Limits: It removes lifetime limits on insurance. Since I plan on living for a while, this is big because in all likelihood my life will be a continuous battle with Goliath, meaning that I will be in and out of treatment moving forward, thus a lifetime cap, might have come into play for me. Hopefully my “clock will be reset to Zero” meaning if limits are back at least I will not have to include 12 months of chemo and 6 weeks of radiation.
  2. Preexisting Conditions: Without this I am completely uninsurable, if I were to switch plans.  Thus I would be held captive forever by my insurance company.  Both of these items would have the potential to financial ruin myself and my family.  For those reasons I like Obamacare.

Granted there are many flaws with the current system and it has to be modified for it to actually work.  However I am grateful for these items.  However the costs are getting crazy, I do see that first hand.  I am on the team that works on my firm’s healthcare plan, so I have been well aware of the crazy price increases.  It’s a little bit humbling seeing the increases and knowing that I am a big reason why, they have gone up so much over the years.

Here are the things that I think must be looked at to make healthcare better and more affordable.

  1. Remove IRS as the score keepers: As a CPA, I do not like the fact that tax returns are used as a way to enforce this and hand out penalties.  I do not think this should be part of the tax code.  The tax code is constantly being used to social issues and welfare, when that is not what it should be used for.  It should be used as a system to pay federal income taxes and that is it.  I completely understand when the tax code is used, since it reaches just about every US citizen.  This won’t matter if Obamacare is gone, but I had already written this, so it stays.
  2. Empowerment of the Patient: I feel like in today’s medical environment, you go to the doctor, they make a recommendation and then you follow it.  What gets approved is all based on western medicine, what insurance companies will reimburse for and how they can best not be sued.  It’s time to expand the options.   I have talked, written and spoken constantly about being your own advocate.  And I find that sad at times, patients need to be provided with all options that are available so they can make an informed decision.  I don’t think that “blind trust” should exist in the medical world.
  3. Price Transparency: This is the biggest key, in my opinion to making healthcare affordable.  Name another industry in which the customer is not aware of the costs or not given the price of a product or service before buying it.  The answer is nothing else.  You go to a doctor and you are never told of the costs of anything you receive.  Patients are never given the option of choosing the less expensive protocol, it is all just based upon whatever the doctor recommends.  I think most people would make wise and both health and costs conscious decisions if they were to be given all the facts.  As a patient, you are not aware of the actually costs of things until you receive you EOB (Explanation of Benefits).  I can tell you from experience, they are not the easiest forms to digest!  The only reason I can think of why patients are not informed is because everyone would think that the hospital is only recommending the cheaper option to save money!  As a patient, the treatment options we accept will hit our bottom line at some point and I think, if given the chance, people will make good decisions that would help to decrease healthcare costs.  If you would present me with two treatment options that provide similar risk and similar results, I would for sure choose the cheaper option.  Yet patients are never given the results.  I truly believe that if patients had to be provided with the costs of procedures as part of the medical process, prior to engaging in treatment, I think our healthcare costs would decrease dramatically.  Yet we have no idea what things costs and how our financial situation will be impacted until after the fact.  The only time I ever had a conversation about money in the past 5 years was about how the SCCA would be covering my costs of radiation and they informed me of my financial obligation and I had to sign paperwork about it.  Honestly I was glad to do so.  I felt empowered about knowing exactly what I was getting myself into.  Let the patient in on the costs, so the patient can be part of the solution!

OK so I am finished.  No I am not going to try and boycott the walk this year.  I am going to meet with my team in about a month, figure out what is going on and then make the best decision I can.  In the meantime, I will continue to harp on empowering patients not only with their care decisions, but also with healthcare costs.




4 Comments leave one →
  1. November 14, 2016 8:29 pm

    David, I can’t blame you for ranting. I’m so sorry that on top of Goliath you have to deal with this kind of bureaucracy and uncertainty.

    You’re candor reminds me of how much work we have to do.


  2. Freddy permalink
    November 14, 2016 11:14 pm

    We are here for you, Champ. Praying for success and God favor over you. Thank you for sharing. Much love and respect.

  3. Anna Sotelo permalink
    November 15, 2016 12:28 am

    I always enjoy your writing David. 👍🏼❤️

  4. gayle thuot permalink
    November 15, 2016 7:44 pm

    David, I agree with everything you said. Please share your post with the Swedish Medical Center, and with whichever folks in Congress you feel comfortable sharing this with, as they hope to deal with health care early next year. Thanks always for sharing your thoughts and experiences.

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