I have Crohn’s disease.  I’ve had it for 17 years, over half my life.  I don’t remember what it’s been like to not have it, but other than a few flare ups, I haven’t had many issues.  I’ve been lucky to have been functioning so well, and lucky to have insurance to cover the massive costs of required tests and medications.  I’ve been lucky until this past year.

In 2008 I had been in a slow slide.  I was losing weight and not feeling well.  In June I saw my specialist and was admitted to the hospital, I was having a massive flare up, and had lost nearly 70 pounds slowly over months.  I was given new meds after a 5 day hospital stay and sent on my way after it looked like my system had calm down.  I was warned surgery might be needed soon, but we’d exhaust medication alternatives first.  Cost was over $22,000 for the hospital stay and tests.  My cost a few hundred for doctor copays and medicine from CVS.  In October I flared up again, and again sent to the hospital.  More tests and a new medicine was introduced, Remicade.  Hospital stay again was over $22,000 and the Remicade would be a monthly infusion at a cost of close to $8,000 an infusion.  Remicade was the last stand before surgery.  My cost, again, a few hundred dollars for copay.  I felt great at this point and looked forward to my monthly infusion.

2009 came and in March I came down with massive pain and high fever.  Again, I was admitted to the hospital and it was discovered a fistula (a side issue from Crohn’s) was causing an internal abscess that was pressing on a nerve.  A drain was put in, I was released.  Cost again for the hospital stay and tests was over $22,000 and my cost very little.  April 7 came, the day after I turned 30.  In the morning I was fatigued and had a low grade fever, I thought it was from my birthday celebrations that weekend.  The abscess had returned and surgery was needed.  It was decided a temporary illeostomy would be performed to take my digestive system offline and I’d be on “a bag” for 6 months, at which point the diseased parts would be removed and I’d be back to “normal”.  I was released on massive amounts of antibiotics and had a nurse visit me a few times a week over the next few weeks.  Again, the bill was well over $22,000 and my cost was a few hundred dollars over the past 6 months for doctor visits and illeostomy bags.

June came along and the campaign I was working on ended.  I had insurance until the end of July, and the impending surgery in late September/early October.  COBRA wasn’t an option due to the fact we didn’t have the minimum number of full time staff.  I had built up my company, 5B Consulting, over the past year.  I could live off of my own company and wouldn’t need a full time job that would provide insurance.  Instead I contacted Carefirst (my provider at the time) about transferring the group insurance, at first I was told this wasn’t possible by one department and I’d need a HIPPA form and reapply.  I contacted another department and was told there was a simple form where I wouldn’t need my HIPPA form.  It was quicker, but a little more expensive.  I’d also receive the same insurance I had before.  I opted for option 2.

I waited my 5 days and received the application which I filled out immediately and gladly cut my check for $660 (my monthly fee according to the chart they sent).  I sent it back the same day.  I waited 10 days to find out if I’d been approved.  I made the call and was told I had been approved, but it’d be another 14 to 20 days before I receive my id number and card, but any expenses would be covered and just have to be submitted for reimbursement.  I was happy, pressure was off.  Surgery was a go.  The check was cashed the day after I was approved on August 14.

Well over 20 days went by and no id card arrived.  On the 28th day, I called to see where it was.  At this point the nightmare began.  I was informed I filled out the wrong form, it was my mistake (mind you I filled out what they sent me).  They would need my HIPPA form, and I should contact member services and it’d be faxed over.  It would then be another 14 to 20 days before the process would be completed.  I argued and described the form I filled out, saying there were no options for types of insurance, since it just transferred over what I had, and now I’m confused as to what I applied for.  The person became argumentative with me, insisting it was not their fault.  I was told I was wrong, it was my fault, and they needed my HIPPA paper.  Grudgingly I went this route.  I contacted member services; the lady was very nice there.  She said she’d fax over my HIPPA paper, and send me a copy.  Surgery was looking more unlikely without insurance settled.

I called back the next day to see if they received the fax, at which point I was informed it’d be 3 business days before it was entered, and she didn’t know.  We then went over my HIPPA coverage (amazing she can look it up, but can’t just attach it to the application right there, and suddenly there was more access to my history that couldn’t be accessed the day before) and was now informed that I had only 15 months of coverage; I needed 18.  I’d have to go back to my previous coverage from my previous employer to get proof there too.  Another hoop is added for me to jump through.  At this point I’m livid.  It is quite clear to me that my delay of coverage benefits them.  I’m a high risk customer that they’ll likely have to pay out more than they bring in.  I bring up the fact that they still have my $660 for a month’s coverage they aren’t providing and point out that delaying my surgery benefits their bottom line and the person on the phone becomes very defensive and I ask how a month ago I was good and the card was on the way, to now this?  I’m given the runaround (I have this call recorded).  Again, I’m to blame according to them.  I asked if I would have ever been contacted about the need for the HIPPA paper?  The response, “no, we’re too short staffed.”  Then, I was told I’d be transferred to member services to request the correct form and start from scratch.  The person couldn’t even get that right, and I was forced to hang up after being transferred to the wrong department.

Customer service is a foreign concept, and basic work flow doesn’t exist. This is waste and inefficiency at it’s best.

So I’m back to the beginning.  No coverage and what was supposed to be a temporary 6 month colostomy bag will likely be 9 months by the time this is over.  But this isn’t just a rant, I want to offer advice to both CareFirst as well as Congress.

To CareFirst:

1. Learn to deal with customers better, it’s not our fault.

1. Enter the 21st century and modernize your database system, all data on a customer, or possible customer should be 1 contact.  A staffer should be able to see the entire history and answer all the questions.

1. Online forms/application – There is no reason I should have a piece of paper in my hand, allow me to apply online and track the process there, this would eliminate time, man power, and cost of materials.

1. Automation – why do I need to request the HIPPA form?  Why didn’t I get an email that my application wasn’t completed?  Trigger emails will do you wonders and cut down on irate people calling.

CareFirst, these suggestions alone will save you a great deal of money and allow you to serve your customers better, if that is indeed your goal.  I do this type of stuff for a living, see company link above, we’ll talk.

To Congress:

I own my own business.  I am very high functioning considering the progress of my disease.  But I need insurance for peace of mind to know my medication, tests, surgery and hospital stays are covered if needed.  I’d be insolvent at this point if it weren’t for insurance.  My normal medication is close to $700 a month, and that’s when I’m healthy, add the Remicade during a flare up and I’m looking at close to $9000 a month to function day to day.  You have a couple of easy options:

1. Allow me to port my insurance with me from job to job without having to start over every time.

1. Allow me to buy into the FEHB.  I worked in the Senate, that was the best coverage I ever had.  I’d be happy to pay the full monthly cost of the coverage.

1. Public Option – no insurance company really wants me.  I’m too expensive.  Give me a way to buy in to someone who’s there to provide coverage, care, and service, not looking to make a profit.

And finally Congress, I have a pre-existing condition.  I know you plan on ending the practice of denying those of us with preexisting conditions coverage or care.  But that’s not enough, I need price protections too.  What stops a company from saying my premium is $2,000 a month, and price me out of coverage?  I’ve asked a few of you, with no answers.

I write this today to vent and show the nightmare I’m living trying to get the surgery I need.  It was easier to get insurance for my car than myself.  But I need coverage.  I will likely have Crohn’s my entire life.  It is genetic, and there is nothing I could have done to prevent it, and nothing I can currently do to cure it.  It is possible stem cells, or some other miracle cure might come along, but I have come to the acceptance it is a part of me and my life and move forward.  It hasn’t physically crippled me in 17 years, I pray it doesn’t financially do so now.