This, however, is the proper start of my rant. A little back story if you will....
Our daughters have been fighting infection for the last two years. Serious infections. You get a cold and have pneumonia in three days kind of infections. You have eight ear infections in six months kind of infections. You have to go to infectious disease doctors to get special antibiotics because run-of-the-mill drugs don't cut it anymore kind of infections. You have to take a low dose antibiotic just to try to function in society infections (and still get above mentioned infections).
Throughout this time, Aetna was actually being awesome about things. They were covering the plethora of doctors and specialist visits at the said co-pays and all of the medication. Granted, I incurred nearly $17,000 in out of pocket expenses during those two years, but we were keeping our girls relatively healthy (even though we couldn't really take them out into the public). We were seeing specialist after specialist and doctor after doctor until we finally exhausted all of the resources in Indianapolis. We knew they both have a compromised immune system, but no one could tell us what was wrong or how to actually treat it. So, we just kept submitting all the claims and visits to Aetna and went on our merry way, thinking we were going to have to keep the kids in a bubble their entire lives.
Our infectious disease doctor referred us to a pair of immunology specialists at the Cincinnati Children's hospital, so we made an appointment, packed up the kids and headed out.
About all that we knew for certain about the girls is that their MBL levels were abnormally low or non-existent. This is important because this protein plays a big role in letting your body know there is an infection. Anyhow, after meeting with the new doctor, he said that the MBL was concerning, but shouldn't be causing this (based on other cases he's worked on). Twelve vials of blood from each kid later, we had a large panel of tests to try to figure out what is wrong.
After a few weeks, and after Aetna gladly paid for the facility, doctor's fees, and labs (aside from my co-insurance), we went back to discuss the results. At this point, they were still in the dark, but it is obvious they have something rare and it will take a lot more research. In the mean time, we decided to switch their prophylactic antibiotic to something stronger to help keep of infection. Like clockwork, the girls got sick again on the new antibiotic (our typical cycle was every two weeks). After consulting with Dr. Kumar, he was very concerned that they still got sick, and decided to break out the big guns to try to at least get them healthy while we tried to figure this out. He decided to switch them to Immunoglobulin G.
Our rep at the hospital called Aetna to get things pre-approved and to make sure that the treatment was covered and got the all clear. She called us up after that was settled and made our first appointment to come in. So, on our third trip to Cincinnati from Indianapolis we got our first infusion (sub Q, in the belly). We were simply waiting on Aetna to approve a home health care company to supply us with the meds and pump so we could do it at home. We figured we would have to come back maybe once more before this was taken care of, but little did we know Aetna in reality hates their customers.
We made a fourth trip, then a fifth trip, then found out the bombshell -- Aetna had denied the treatment for the girls. The thing is, after getting these treatments for three weeks, the girls had shown a dramatic improvement. They were playing, and I mean they were playing HARD. They probably never felt this good in their sick little lives, and actually got over a cold on their own WITHOUT any extra medication. This miracle drug had completely changed their quality of life, and Aetna was wanting to take that all away.
Our Doctor filed an appeal on the decision, but wanted to keep treating the girls because it was obviously working. Thankfully, he has the hospital holding the charges on the medication until this gets straightened out. Aetna has up to 30 days to respond to an appeal, so we waited, and kept driving back and forth from Indianapolis to Cincinnati to get life changing treatments for our girls.
After the 30 days had passed, Aetna finally responded -- with another denial stating that they don't cover IgG treatments for what the doctor had said he was treating them for because it was "experimental". Obviously, the experiment worked because our kids were finally able to be kids. He called and talked to the director of Aetna and found that there was a very specific black and white list of what they approved this medication for. The problem is, we don't have a diagnosis yet -- we just know the immune system is involved. So, he worked up a second appeal and drew more labs to get more ammunition.
Keep in mind, Aetna has been happily processing and paying for all of the facility and doctor fees this entire time, but just refuses to pay for the medication. If they won't pay for the treatment, why are they paying for the facility FOR the treatment? Not to mention that we haven't been to the pediatrician's office for 3 months (instead of every two weeks like before).
Anyhow, another 30 days went by and Aetna responded to the second appeal by sending me a letter. This time, their response was that they couldn't process the appeal because Dr. Kumar wasn't "authorized" to act on our daughters' behalf. HE IS THEIR FREAKING DOCTOR! What more authorization do you need?? So, today I faxed the release in so that their own doctor can see their medical information and act on their behalf.
So, we get to keep going back to get the treatments that actually give our kids a reasonable quality of life until Aetna decides to stop jerking us around. I figured up that every trip costs us nearly $100 in gas and food -- not to mention the fact that I have to work over during the week to make up for the day I have to be out of the office. Between the growing financial burden this is putting on us and the added stress of running so hard, it is amazing I haven't completely lost it yet.
Without insurance, the treatments cost roughly $1000 per kid per week -- so $8666 a month or $104,000 per year. I don't make nearly that much, so there is no way I can pay for this treatment let alone afford to live. Sadly, the girls' quality of life rests soundly upon Aetna's shoulders. If they deny the treatments, they are subjecting our girls to a life of infection, sickness, and being socially isolated. Aetna hates their customers, and apparently hates innocent little girls that just want a chance at a normal life, which this medication gives them.
I can't fight Aetna directly, but I can at least put our story out there so that others can see what kind of company they truly are. Far too often, people with similar conditions have the trouble getting the life changing medications they need. IgG is just one that I know of that people have to fight for. It is incomprehensible to me that people have to fight for IgG given the dramatic effects it has on those who need it.
For a point of reference, this picture represents all of the medications that my daughters (2 and 4) were on for the 6 months prior to starting IgG. We have only had to take over the counter allergy meds since.
I ask that you share our story with anyone you can. Hopefully this will help others in the future with similar battles.