Monday, February 4, 2013

Medical Expense Update Day 35: A Humbling Day

I keep telling myself that God will provide. We got another shocker last night. Js next shipment of catheters cost $195 and flex is used up-- we have already had over 3K in medical expenses this year. We are at $3,137.80, not including 3 appointments from January we have not been billed for yet. Today has been humbling for me. Calling assistance programs and explaining that we can't do this on our own. All things I've done in past years since our co-pays have skyrocketed.

I've called all the assistance programs, asked our doctors to help and then called CSS.  I was chewed out this morning. I wasn't even asking for money, but rather if they knew places who might assist middle class families with insurance pay for their children's medication co-pays. $495 is a lot of money. That's $1980 a year and we already have huge medical bills. The woman would not even let me explain what we'd already tried. She just kept telling me to be quiet and to listen to her. I asked her not to be condescending and almost hung up on her. It is very difficult for us to even reach out and ask for help. 

I sent the following email to the director after our conversation and received an apology with a list of things to do, that  we've already done. I simply replied that I would not have called CSS unless I had already tried everything on the list first. *sighs*   If you work for a charity, maybe my letter will help you with your compassion level.

To whom it may concern:

I placed a phone call to your organization this morning. As a Catholic, I am embarrassed by the condescending manner in which I was treated.

My family is active in our local parish, we donate to charity and I certainly did not deserve to get a *what for* when I called looking for prescription help for a medication that protects my son’s kidneys.  Our co pay was $150 for 5 years. In 2011,it went up to $283, then last year $343 and this year (in a few weeks) we will have to pay a $495 co-pay.   Last year, our family had 16K in out of pocket medical expenses—we paid 13K in cash, flax and credit.  Our flex has been dropped because of Obamacare and we ran out of that before the end of January. Because of increased taxes and premiums, my husband is bringing home $400 less a month. We’ve already had over 3K in medical expenses in 2013.

The woman with whom I spoke seemed to fixate on the fact that I had not gone into Johnson and Johnson to apply for their medication scholarships--  I can’t fly to another state. We have insurance and my husband has a job. My two boys were denied SSI and CAPC – my youngest gets a blood product infused once a week, caths every 4 hours and doesn’t respond to the generic form of this particular medication that protects his kidneys from damage. The woman with whom I spoke insulted me and treated me if I was some dolt who hadn’t tried to find the “safeguards in the system” – those were her words—she said the system has safeguards.

I do not appreciate her ill treatment.  Had she actually listened to my story, she may have found out a bit more about what we’ve done over these years to get help from the *system* and its *safeguards* --instead, once she heard the medication issue and got stuck on my not going in person to apply, all she could do was tell me to listen to her. Perhaps had she listened to our entire story, her bitterness toward me would have faded and she might have been able to help.

My youngest has had a neurogenic bladder since he was  (likely) born... at the age of 5, he began leaking urine all day long -- after he'd been potty trained for a year. We tried every med available. NOTHING worked...He had a psychotic reaction to Detrol LA, which eliminates that class of drugs. Tests showed that he had a neurogenic bladder. He had neurosurgery at 9 1/2 -- probably too late as it doesn't reverse damage....only prevents further damage. The Duke doctor and CHOP doctor decided that it would be worth trying this surgery-- they go in and inject the bladder with Botox. The Duke doctor had only done it once and the CHOP doc 20 times, so, with Js history, they agreed we should go to CHOP.  Medical literature showed that all patients who had not responded to medications like Joseph responded to the Botox injections.  Joseph had ZERO response.ZERO. That's when we went to the complex urology clinic at CC. Testing there showed that even on generic meds and Botox injections, he still had pressures high enough to cause kidney damage.  He started cathing... titrated up to dose on generic Ditropan and was still leaking. Dr.  told us some kids do not respond to generic-- so we started name brand Ditropan and for the first time in his life, Joseph wasn't leaking urine during the day. He wasn't lying to his friends about why he changed clothes. He wasn't embarrassed because he smelled like urine. He didn't have to get up during Mass 3 or 4 times to run to the bathroom to clean himself-- We've tried generic again and we've tried dose reductions-- he starts having pain and leaking urine, both signs that the pressures are really high.  If this was the only medication he took, there wouldn't be a problem.... but we paid almost 6K for meds last year.... and can't afford any increases!

I am not impressed with your employees—if they treat every person like I was treated.......   I hope that you all stay healthy and that your children are healthy. I pray that you don’t ever have to know what life is like with 2 chronically ill kids or know what it is to be thankful that by Jan 7 your insurance has already paid out $44,000 plus for your children’s medications. I pray you never have to ask people if they know where you can find copay assistance for middle class families with insurance. I pray that you learn to be a bit more compassionate when answering the phones. Chances are anyone calling Catholic Social Services is in need and in some sort of distress.

Peace be with you,


"If at any time the going gets harder in our interior struggle, that will be a good moment to show that our love is in earnest." ~St. Josemaria Escriva

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